By patrick on Tuesday, June 22, 2010 - 07:21 pm:

I have a spare tube of Protopic 100grams (0.1% strength). I no longer use protopic and would like to sell it. Tube is brand new and never been opened. If you would be interested in buying it please email me at p2000 AT safe-mail.net. Tube retails at hundreds of pounds but I would accept 40 pounds for it. Im willing to post it on a trust basis and if you are happy, you can pay me via paypal or put a cheque in the post. Im based in the UK. Thanks.

By richars1 on Thursday, February 18, 2010 - 05:38 pm:

Hi everyone,

I wanted to see if anyone else out there had any experience of taking Cellcept or is currently taking it? I started taking it a few days ago and wanted to know how long it usually takes to start working and if people found the drug beneficial to their eczema. Also I'm interested to find out how long people took it for and if their eczema improved at all after stopping.

Please get in touch if you can help.

Thanks Rich

By Suzanne on Friday, October 30, 2009 - 08:17 am:

Hey APrayer,

Sorry to see that things aren't going so well. I'm sorry, but I don't know anything about cellcept! I have heard of it but I haven't been on it...

I am trying something new, though. I haven't been on the cyclo for a while now. I have still had some bad flare ups unfortunately, but I live in constant hope. Anyway back to what I was talking about... Instead of using the usual moisturisers on my skin, I am now trying pure cocnut oil and glycerin on my skin, they say that it helps the skin retain moisture. Also, that it doesn't clog the pores like the heavy creams do and it allows the skin to breath. My skin doesn't feel as dry or flakey as usual and it definitely feels soft. It's early days, so I will let you know how it goes.

One thing I have figured out with this condition is that all the drugs you use, unfortunately are only a temporary fix and once you stop the eczema comes back!!! The biggest problem with eczema is the itch and scratching so I am hoping that this natural remedy might just help.

I really hope things get a bit better for your friend, I know they will, we all just have to stay positive, easier said than done, I know!!!! Sorry I couldn't be more helpful.

Take care.

p.s. I am also taking zinc, a good multi-vitamen and a desert spoon of flaxseed oil three times a day.

p.p.s Happy Halloween everybody

By APrayer on Thursday, October 29, 2009 - 02:55 pm:

Suzanne,

How are you doing??

Do you know anything about cellcept and how effective it can be?? Please share anything you know.

Thanks!

By APrayer on Monday, October 12, 2009 - 06:37 pm:

Hi Friends,

So apparently the cyclo effect is starting to die down for my friend and it's back to the itchy and scratchy phase. The doc is now suggesting Cellcept. Has anyone tried this? If so, would you mind sharing your experience?

Thanks!

By Suzanne on Monday, September 07, 2009 - 08:18 am:

Dear APrayer,

Nice to hear from you. Glad to hear the cyclosporin is helping your friend. The best advice I could give, is make sure that she/he keeps up the moisturising especially while the skin starts to heal. Being on the cyclo can lull you into a false sense of security and you mighten put as much cream on because the skin has started to settle down. The softer your skin the better chance you have to keep control of it.

As for me..... I've just done another stint in hospital, as much as I hate going in, it's the only place that helps me get it under control relatively quickly. I didn't go back on the cyclo, I managed to contain it with diprosone and lots and lots of demeese ointment.

Yeah, I am still on the tacolimus oinment, my dermo says that I can stay on it indefinetely. I hope he's right...... I'd hate to think how I'd be if I wasn't.

Take Care

By Daniel on Wednesday, September 02, 2009 - 11:54 pm:

Hi Aprayer,
I am off to the Dermatologists first thing tomorrow morning. I am so excited :D
I shall update you on my progress in due time
Thanks for taking an interest, it is so nice to talk to other people in the same boat as me!

Dan

By APrayer on Wednesday, September 02, 2009 - 05:38 pm:

Dear Suzanne,

How are you doing? How is your excema treating you? Are you still using the tacrolimus ointment? How is that going?

My friend is doing much better. Her skin has cleared up drastically and now she is on 200 mg per day. She still has spots on her wrists which don't seem to go away, but her face is cleared. Her eyebrows are growing back and she looks absolutely gorgeous. She is now 7 weeks into it and the doc wants to stop it at 12 weeks. I am a little worried of the after effect. Are there any precautions she can take while she is slowly weening off the medication that won't cause a rebound effect?

Hope things are going well with you!


Dear Daniel,

How's the cyclosporin going for you??

By Daniel on Friday, August 21, 2009 - 06:49 pm:

Hi APrayer
Thankyou so much for the reply
I went and had my blood test last week to check if everything is working correctly before-hand. I now have an apointment for 2 weeks time so the doc can tell me the results of the bloods and the verdict of whether i can go on them.

By APrayer on Friday, August 21, 2009 - 04:07 am:

Hi Daniel,

Here is my attempt to answer ur questions:

1) It should start working in a few days depending on the severity and dose of the medication.

2) Not sure about the dandruff...

3) Tablets are huge and white. The 100mg ones are probably as wide and big as the top part of ur pinky.

4) Once or twice a day - depending on your situation. hope this helps!

By itchyhands on Wednesday, August 19, 2009 - 10:18 pm:

hi im michelle and i have pomphylix eczema really bad on my hands and its really painful and really itchy and the creams i get dont work. i just wanted to know does anyone know what helps and do u know if pomphylix eczema can effect the eyes n mouth area thank you xxx

By Daniel on Tuesday, August 11, 2009 - 12:41 am:

Hello everyone,
My eczema has gotten worse and worse over the last couple of years (i have had it since a very young age). The main reason for my eczema getting worse is that none of the creams i use seem to work or even make me work. Or, they will work for a short while and then make me itchy and react with my skin.
My GP has only now recently mentioned Cyclosporin. I have an apointment this Thursday at the hospital.
I have a few questions though about being on them and such.
1) How fast does it start working?
2) Will my bad dandruff also get bettered?
3) What are the tablets like?
4) How often do you have to take them?
Over the last couple of days i have been bed ridden due to a bad infection on my face. My eczema gets that bad that i am ashamed to go out of the house. I am very anxious to go to the hospital on Thursday as it will be such a relief to finally life a slightly more "normal" life.
Thankyou very much for you time and my thoughts go out to everyone out there who is going through the same things as me.

By Suzanne on Wednesday, July 29, 2009 - 07:05 am:

Hi APrayer,

Sorry to hear your friend is still struggling! I am no doctor but I really don't think she is on a higher enough dose for it to be effective... Maybe, if she is not happy with that doctor, she should definitely find another.

By APrayer on Tuesday, July 28, 2009 - 06:04 pm:

Hi Suzanne,

Okay, no worries...we can just talk here. I just thought it'd be nice to get to know each other on more personal level but no worries. I live in the US. I've always wanted to come to Australia! Sounds like such a cool place!

My friend has now been on cyclo for 1 week and 2 days. She's only on 100mg and she weighs about 150 pounds. Unfortunately, she doesn't see much improvement so far. But she said it did help a little with the inflammation on her face. But she still scratches a lot. Her doctor is really terrible and is saying if she hasn't seen improvement yet, then maybe she needs to try some injectables. Or she said she can try increasing the dose and see what happens...what kind of a doc is she?! My friend called me crying and I really didn't know what to tell her. She had so much hope in this doc and the cyclo and they both just let her down.

I told her she should go back to the doc and get the dose increased. I really think the doc is just trying to get rid of her because my friend has been calling a lot with concerns. But she's a doc!! Isn't that what she's there for??? Some of the docs in the world are just awful. It's such a shame

By Suzanne on Friday, July 24, 2009 - 08:37 am:

Hi APrayer,

Unfortunately, I don't have an email address, I know, thats strange in this day an age, but I've never really had the need. I just talk to people on the phone. Just talking on this website has been my first experience with technology. I like logging on every now and then to see what people have to say and if there might be some ideas that can help me. The people on this forum know more about this desease than the doctors and because they are living with eczema and using all the different types of treatments I value what everyone has to say.

Do you live in Australia? I live in Brisbane. How's your freind doing now? Has the cyclosporin made a difference yet? What does she think of it? It's also nice to talk to people who really know what its like living with eczema. I check this website frequently and would be happy to talk to you and compare different ideas, if thats okay....

By APrayer on Wednesday, July 22, 2009 - 05:38 pm:

Hi Suzanne!

Thanks so much for your help! You are a sweetheart. If you don't mind, can you send me an email at kmahajan8@hotmail.com ? I'd love to get to know you and be your friend. If not, that's okay too, but please know I am very grateful for your help and responses.

Thanks,
APrayer

By Suzanne on Friday, July 17, 2009 - 11:36 pm:

Hi APrayer,

Yeah thats right. I started off on 100mg for a couple of days then gradually increased the dose. The dose depends of your weight some people take up to 300mg a day. It takes probably a couple of weeks before you see the full effects but even on a 100mg I noticed my skin wasn't as itchy so it won't take too long.

In regards to the alcohol it can make your skin flushed. I am not a big drinker, my drinking days are pretty much over. However, I did drink alchol one night and didn't have any adverse side effects. I suppose it all depends on how the body processess the alacohol your friend might be fine. She will definitely see an improvement in her skin being on the cyclo and just being able to live some sort of normal life does so much for your self esteem. Hope everything works out, I am keeping my fingers crossed!!!!

By APrayer on Friday, July 17, 2009 - 05:38 pm:

Thanks Suzanne! My friend is starting on cyclo tonight...I'm really nervous for her. I hope everything goes well. She's starting off with 100 mg. Is that too little? How long do you think it'll take to really work? She stopped her prednisone a few days ago and her skin is really bad again Also, do you know if you can have a little alcohol which being on cyclo? I would hate for her to not be able to party while being on the medication.

Also, how are you doing now Suzanne?

By Suzanne on Friday, July 17, 2009 - 08:38 am:

Dear APrayer,

Cyclosporin takes a little while to work, it needs to build up in your body. Prednisone works very quickly, I am no doctor, but maybe he has you on the prednisone until the cyclosporin kicks in. Hope this helps!!!!

By APrayer on Wednesday, July 15, 2009 - 06:12 pm:

hi guys...

please help me...can someone answer the question? is there any connection between being on prednisone first and then going on cyclo? do they have to be taken one after another? i don't know why my doc prescibed my friend with prednisone first and then said to start on cyclo. did anyone else that took cyclo have to be on prednisone first?

By APrayer on Thursday, July 02, 2009 - 02:25 pm:

hi all...

so what was the process of getting started on the cyclo? did any of u take prednisone first and then take cyclo...or did u start taking them both simulataneously?? my friend's doc keeps changing what she says so we are confused what she should do?? can anyone who knows give their input?

By Suzanne on Friday, June 26, 2009 - 03:14 am:

Dear APrayer,

The time I spent on cyclosporin although it was relatively short compared to most, probably about six months in total, I never had any illnesses, didn't catch colds or flu. The one thing I will say I noticed while I was on the drug was that I felt extremely tired, exhausted all the time that was another reason I decided to go off the drug. In saying that, I don't think I would have recovered as well as I have if I hadn't gone on cyclosporin. It gave the skin on my body a chance to heal, I wasn't scratching all the time and for once I was able to focus on getting the moisture back into my skin by moisturising. I found cetaphyl moisturiser really good, better to apply a little often rather tham smoothering all at once.

In regards to the tacrolimus ointment, I agree there are risks but it won't thin your skin which the steroid creams do. The face is such a sensitive area and you have to be so careful what you put on it. For me having eczema on my face was the worst because I could hide the rest of my body but my face was there for all to see! I guess it's all trial and error and every has to find something that works for them.

This site has been my saving grace until I found it, I really thought I was the only person with severe eczema and it was very depressing. It feels good to be able to talk to people who are experiencing the same things. I have also found more things on this website that have benefited me than seeing my dermatologist. Good luck and I hope things get better.

By APrayer on Thursday, June 25, 2009 - 02:35 pm:

Dear Suzanne,

Thank you so much for your response. I guess you never know until you try. My friend works in healthcare and is always around sick people..that is another concern...if she's taking an immuno-suppressant, hopefully the time with clear skin she will get won't be wasted by her taking on some other sickness. Did you find yourself getting sick extremely easily due to the cyclo?

I will tell her about the ointment you recommended. She is a little hesitant about putting things on her face, but I will tell her that you also had it and tried using it.

Thank you again for your message. Feels nice that people can sympathize. I wish my friend would come on this forum and see how many people are going thru the same things she is, but she thinks it'll just make her more depressed.

Anyway, my heart goes out to all of you who are going thru this demoniac skin condition. You are all in my prayers.

God bless.

By Suzanne on Thursday, June 25, 2009 - 08:13 am:

Dear APrayer,

How lucky your friend is to have someone like you in her life. I too have cronic eczema especially on my face and neck. I also had it all over my body, you look and feel miserable. It is as much a mental struggle as it is physical.

Your right cyclosporin will make a big difference and give her a break for a little while which I am sure she is in desperate need of. It will definitely help with the itch and inflamation. I have also been using tacolimus ointment 0.03% on my face and neck and my skin is perfect!!! I have been using it now for just over 12 months, while I use the ointment my face and neck are perfect... but if I miss a day my face starts to feel tight and red. So at the moment I figure I will just have to keep using it until I find something else I don't have much choice, I definitely don't want to go back to the way I was before. My body has come really good though so that is one bonus. I stopped taking the cyclosporin after a few months because I was concerned about long term consequences but it did help settle my body down enough so that I could keep it under control once I came off the drug. I know that tacrolimus ointment is an immune supressant too but it is only topical and hopefully won't affect my kidney or liver like the cyclosporin.

I guess your dammed if you do and dammed if you don't!!!! All I know is that this time last year I was a mess and in hospital, today I must say I am 90% better all I have to do now is work on the other 10%. I hope your friend finds something that will help and my heart goes out to all sufferers of eczema it is a cruel desease. Don't let her give up each day research is finding new things that might work. Having someone like you in her life is very important. Hope this helps.

By APrayer on Wednesday, June 24, 2009 - 07:13 pm:

hi guys,
my best friend is about to get started on cyclo and i am very concerned about her. she's had eczema off and on her whole life, and for the last year it's come severely on her face, which u all know is the worst thing. i want her to get rid of it so badly, for its making her miserable and i can't stand to see her like this. i guess after reading all this, it will help her, but it will come back at the end. any advise i can give her to help her feel confident? i really don't know how to deal with her emotions and it makes us fight quite a bit. i just want her to get better. I can't see her like this.

By Rosie on Wednesday, June 24, 2009 - 01:22 pm:

Hi everyone, i think i am going to be put on cyclosporin tomorrow, or another immune-supressing drug, can anyone tell me how long it took to start working? Thank you

By Jeess on Tuesday, June 16, 2009 - 10:56 pm:

The thing about cyclo is that you can only be on it for a short time. It worked for 6 months with my skin, but then it just didn't anymore. At least for the extreme cases it just doesn't do it. I'm now on cellcept. Apparently it works for longer without the terrible side effects Methotrexate or cyclo has. I'll let you know how it goes! It might be a great alternative for a lot of you who may not find the same relief the longer you're on cyclo

By sarah on Wednesday, May 27, 2009 - 01:22 am:

HIGH HUMIDITY or CYCLOSPORIN is my only relief....After 38 years suffering from moderate to severe Excema I have been on cyclo for a week, with miraculous results and strange but ( so far) tolerable side effects. I have tried just about every mainstream, alternative, chemical and natural treatments, exclusion diets, avoiding allegens ( everything), even practising religions that advocate detachment from the material body ...with little or no relief ....Like you all, my whole existance has revolved around my skin condition, which I can tolerate and adjust to when not extremely severe..However long term use of steroids led my body to become non-responsive about 6 months ago, when I was first offfered cyclo... I was not keen and so I went to Kerala in India to try Ayurvedic treatment, however with in 10 days of arriving my skin was almost clear, (before having the Ayurvedic treatment) and it stayed quite clear for the 4 months I was there. the Ayurvedic treatment improved my general skin texture but did not get rid of the few patches of excema I had. ( I understand that the high humidity improved my skin barrier function, thus dealing with the cause rather than the symptoms of excema) However on return to the UK the excema quickly flared up and literaly crippled me and I felt hopeless and suicidal. So with no other option ( now I could not move, let alone travel back to India) I went on 5mg per kilo of cyclosporine and its amazing...i know its not ideal and only temporary, but gives me much relief and hope, and some time to make a longer term plan to move to a hot humid climate, for at least part of the year. Suffering from Excema has been horrendous, but has some possitive affects in that it has made me quite independant and determined and has led me round the world in search of relief and understanding.
It makes me live for the moment and puts my life into perspective. For example, If I was African I would already be dead, as many African countries have a life expectancy of under 40,and I may have been in the under 5 mortality rate stats. So I know I am lucky to be alive but it does not feel that way living with severe excema. I hope we can all find the hope and strength to keep looking for ways to deal with this condition... so keep sharing your experiences and mutual support, and appreciate the less itchy, less painful moments, as they are rare precious opportunities to enjoy being alive...

By Jess on Wednesday, May 06, 2009 - 02:38 pm:

When I was first put on cyclo it worked really well, but then I noticed after 6 months it stopped working as well. I've since discovered I have a severe allergy to Birch pollen and dust. It sucks, because I went four years just treating the symptoms with cyclosporine where all I needed was an allergist. The thing that made the biggest difference was Hydrolatum cream. You can only get it over the counter, but it works wonders. He told me to draw a luke warm bath twice a day, lay in it for 30 minutes-an hour, then without drying yourself off you begin to rub in the hydrolatum. It's really sticky, but honestly I went from being bedridden and on severe prednisone kicks to working out at the gym again. My allergist said doctors never tell you how to moisturize right. I'm not sure why it had to take 5 years, but I hope this helps someone that has also been suffering

By Itchymama on Friday, May 01, 2009 - 03:44 pm:

SO I went and not only got cyclo but was also put on prednisone for the short term, Im already seeing a wonderful improvement! I cant walk and move again and although I know steroids and other things like this are bad it feels so good to be able to "hop" out of bed instead of inching my way out slowly as my skin all cracks and seeps with every move! Im just wondering how everyone else is doing?

By Itchymama on Wednesday, April 29, 2009 - 04:01 am:

Hi folks, well I came across this after googling Cyclo, My dermatologist perscribed it to me about two weeks ago and after doing some intial research I thought NO WAY not with those side effects. Then I got myself refered to an allergist, which didnt help because we cant do allergy testing anywhere due to the fact that I have not one clear spot of skin to do it on. I had eczema when I was a kid but it cleared up in my teens only to reappear about a year ago with a venagance!!! I have had staph infections now a few times and hospital visit once, I was off work for a week since i was not able to move, got on the prednison and that worked but you cant be on that one too long without hurrendous side effects. After reading these posts I have decided tomorrow I will go back to my derm and get on Cyclo, I hope it works for me at night with the little sleep I have I dream of having non itchy skin even for just a week!!! thank you guys I will keep you updated

By Matt on Saturday, April 11, 2009 - 01:28 am:

I'm 18 and had had ezcema since i was born, not beng able to leave the hosptial until i was 6 months (so im told).
My skin was so thin and fragile then that the slight movement would crack the skin.

I was put on cyclosporin when i was about 8, and to honest, it was a miracle. My body was clear. although i knew it wouldnt rid me of eczema it was a great relief having normal skin for a few months. One big problem in why i stopped taking cyclosporn was the constant blood tests and appointments to see the professor. therefore it led me to stop. A few months later, it was back. Not as bad as before, but still pretty bad. I had spent all my teenage years with servere atopic eczema, which in itself not easy, let alone dealing with other kids about it. Now that im alot older, i have INSISTED to the doctors that i would be put back on it.
Im now two weeks into it and its absolutely superb! No more itching, sleepless nights, or even the sensitive feeling of it all!

I Highly recommend it to anyone who has the chance, it does wonders!

Thanks.

By Winthewar on Tuesday, March 10, 2009 - 08:58 am:

Thanks S!
This was a last resort, was at the mentally and physical exhausted stage and no options left (and desperate for some decent sleep). Glad I'm not the only one having fun to try and explain at work (Wish I still had my old boss who even understood neding time off to do wet dressings, even if she bagged me with mummy jokes). At least I can do the bloods on Saturdays where I am. (All clear so far)
Will keep an eye out for exhuastion (none yet). Thanks for the warning. At least my dermatologist warned me about most things and he was clear about the comedown, and with help from this site I'm keeping it realistic.
Have a good none scratchy night everyone!

By s on Thursday, March 05, 2009 - 04:29 pm:

Cyclosporin really is a last ditch resort - don't get me wrong, it has its benefits but there is no miracle for eczema.

I had to go on Neoral for 6 months two years ago as my eczema was incredibly severe and it did eventually stem the tide of this crippling condition but only temporarily...it didn't come back over night but it did come back, thankfully not quite as severely as before.

I don't regret going on it, indeed I'd run out of other options by that point but I don't think I'd do it again. From a logistical point of view it's a complete pain to have to go and get your bloods checked every week and that's without the consultants appointments on top of that (even the most sympathetic boss gets tired off it after a while.)Physically, as is evident from this thread, everyone's reactions to cyclosporin is different (typical of the disease itself really) - personally it knocked me for six as it did what it said on the tin, it suppressed my immune system. Thing is I wasn't just totally exhausted for those six months, it takes time to work its way out of your system and to be honest I'm not convinced that it hasn't affected my immune system in the long run as I still seem to pick up colds etc a lot more frequently than most.

Long story short, I'd say is do it if you really have to (being eczema free for even 6-9 months afterwards was like heaven on earth) but don't expect too much from it either in the long term or that you won't struggle in other ways whilst taking it.

By Winthewar on Monday, February 23, 2009 - 09:41 am:

Thanks Figgym was wondering if I was going a bit crazy. Hmmm I might have to go the same way stopping the cyclo if this rash goes on. Have tried UVB and it does tend to help but as I live in sydney only really need it in winter (living in Aus does have some benifits). But thanks for the reminder, I might also start trying cool saltwater baths again as well.

By the way has anyone halucinated or heard about halucinations using cyclo? Got a lovely scary story about halucunating on cyclo (this person was using it for a transplant not eczema) from my friend.

By figgymyson on Sunday, February 22, 2009 - 09:24 am:

There seems to be a whole list of different side effects to cylco. Some minor, some more severe. I tried cyclo a few months ago and had to stop taking it because I broke out in an itchy, spotty rash mainly on my neck and face. The frustrating thing was that it worked quickly to get rid of my dermatits - almost within a couple of days - but I couldn't put up with the new rash.As a result I stopped taking it. Everyone reacts to cyclo differently. I have a friend who takes it for a different condition and has had not side effects at all. I am now at the end of a course of narrowband UVB treatment and my skin is better than it has been for a long time. Hav you considered this as an alternative?

By Wintherwar on Sunday, February 22, 2009 - 05:48 am:

HI People,

I just found this site, so good to hear from people who suffer verious versions of eczema and dermatitis. I have been living in this lovely little hellish world pretty well by myself since I was 12 (am now 30 so all my adult life).

Have just started on the cyclosporin as prednisolne was making me gain weight very fast after having to take is for several consecutive flare ups. (Hmm stretch marks on the arms with eczema scars and veins from thin skin from steriod creams - such a good look). Been on it for about three weeks 100mg in morn and 200mg in evening, it has helped loads (non drugged sleep is brilliant I had forgotten that). Only thing is about a week ago I started getting a fine rash on my torso and right forarm (how ironic i know) mostly just after I had taken a tablet, Dermo suggested that I knock downn the evening dose to 100mg. The rash seems to be not as bad, but still there.
Has anyone else exprienced this? Also has anyone noticed that they seem to be tastier or god gift to mozzies? (I used to get bitten but seems to be more since I started the cyclo.)
Only other side affects are minor occasional tiny bouts of nausea and occasional burning sensation in hands and feet which I can handle, Oh and a bit of extra fine facial hair, (can handle this as well, its called waxing and had do do when on perdno anyway).

Sorry this is so long I'm just excited I can talk to people have a clue about what I'm talking about, and not people who try but really have no clue about this kind of war with your body.

By Puddleduck on Monday, December 01, 2008 - 09:08 pm:

Hi there,

Have any women previously treated with Cyclosporin gone on to conceive healthy babies afterwards?
It would be good to know.
I haven't yet had the opportunity to have children and don't want to compromise my fertility.
However, if the benefits of the treatment outweigh the risks, I may well have to go ahead.

I look forward to hearing from you.

Hope all is as well as can be.

By Earthbiscuit on Wednesday, November 12, 2008 - 02:08 pm:

Paige, I am currently getting allergy shots and I had one allergist tell me that it would not help with the eczema while another allergist has suggested that I give it a try because I am allergic to things like dust mites, pollen, dust, etc and while allergy shots are intended for respiratory issues, eczema sufferers do flare up due to those allergens. In any case, I've been on the shots for about 4 months. I dont know if I've seen any significant improvement. I've had severe eczema for the last two years. I am not 24. My older sister however did the same allegy shots and her eczema is now under control, At one point she had very severe eczema. In any case, I think you should start her on the shots. They will help in the long run.

By paige on Wednesday, November 12, 2008 - 05:01 am:

ALLERGY SHOTS & ECZEMA??? I have a 4 yr old daughter with severe eczema. We have been TO 3 Allergists, 2 Dermatologist, Pediatricians, and Family Practice (soon to visit Infectious Disease since staph infection 3 x's in 6 months). Derm is talking about possible Cyclosporine Rx. Any advice? Also, some dr's are recommending allergy shots. I have been told there is no clinical evidence linking allergy shots to eczema relief. Any advice there? Dr's have also mentioned light box therapy? I feel very overwhelmed and do not know what path to take next. She has been on so much rx medicine for the past few years and our last visit w/derm she stated cut steroids out due to her age and I agreed. Any advice would be greatly appreciated. thanks

By Riffer on Sunday, September 28, 2008 - 12:50 pm:

I'm 40 and I've had really really eczema for all my life.

I've used *EVERY* possible cream there is. My skin is so damaged from using steriod, I can't do running and for fear of tearing the very fragile skin.

I warn anyone not to use it in the creases.

This year has been the worst, every other week I have a flare up so bad I can't move. Mentally and physically this is draining especially since I have four kids.

Last week, I finally got to see a specialist (after being on a 10 months waiting list). He immediately put me on a low dosage of Cyclosporin.

It's been about a week and the itching and sleepless nights have almost dissapeared.

For the first time for a very long time, I have a cheese sarnie! Man it was the best and I had NO flare up.

I wish I had this earlier.

By riss on Thursday, September 25, 2008 - 08:27 pm:

My son who is 10 has really bad eczema for a year now. Nothing seems to work and we're all frustrated! His dermatologist suggested Cyclosporin for 6 months to try to reset his immune system. I'm worried about its side effects, but this may be my son's chance to live like a regular 10 year old.
To those who have kids on cyclosporin, any thoughts/regrets? Did you have to give up other activities because of immunotherapy?

By frustrated on Sunday, August 24, 2008 - 02:52 am:

This site has helped me a great deal. Do any of you know of a support group like a yahoo group of people who are on cyclosporin? you can send a response to my email address. thanks , I hope everyone is doing better. jean

By weddinggirl on Monday, August 18, 2008 - 09:30 pm:

Hi, I have only just discovered this site. I have had eczema since a toddler with different degrees of severity at different times.

For about a year now it has been quite bad, mainly on my face. I get very red angry, raised, dry, itchy patches.

I use a 1% steroid cream on my face once a day, my derm says this is ok, but it doesn't control it and sometimes (at least once a week) I use a stronger steroid.

I am getting married in nov and the only thing worrying me is my skin, I have paid to see a derm privatly and he has refered me to another specialist with a view to cyclo. I have only just started researching this so any info would be appreciated.

Today the skin on my face is really good and almost "normal", so I am wondering if it is really bad enough, but somedays I don't want to leave the house.

Should I just continue with the steroid creams?

Sorry this is so long x

By Rich on Monday, August 11, 2008 - 05:10 pm:

Hi hopeful,

The cost of the cylco will depend on the dose. This is dependent on bodyweight. I was on 250mg a day but weigh about 90 kilos. It's expensive. Mine was free through the NHS but it would have cost £250 for a months supply. There are cheaper alternatives out there. Anymore questions let me know.

Rich

By hopeful on Wednesday, August 06, 2008 - 03:12 pm:

i have a 10 year old child who has a very extreme case of eczema tried everything - now doc say cyclosporin may be the best hope. a little nervous about it in addition i was told it is very expensive - can anyone give me an idea of what the cost is? need to make a decision in next day.

By Puddleduck on Thursday, July 31, 2008 - 11:03 am:

Hi there,
I have a complex case of Endometriosis as well as chronic atopic Eczema and wondered whether any other women with Endometriosis have used Cyclosporin for Eczema. How well did it work for your skin and also how was your Endometriosis while you were on it?
I'm 32 and have not had children (yet).

By brooke on Friday, July 25, 2008 - 03:36 am:

Hi to all,

I am an immunology specialist and was wondering if anyone has tried a Biologic that blocks TNFa? These treatments are used for mild to severe PsA.
These treatments are a miracle for most patients. The name of some are Remicade, and Humira. Maybe there are some trials using these biologics you can look for with your physicians? Many Dermatologist are not frequent users of these products....you might need to see a Rheumatolgist or an Immunologist in your area.

By 4myson on Tuesday, June 17, 2008 - 04:58 pm:

can anyone tell me if they currently have a child less than 4 years old or know of a family with a child on cyclosporin now or have put they're child on cyclosporin in the past, if it has worked, any regrets?...I have a 4 year old son with severe eczema and we are at a cross road with his treatment. One of the last options is the treatment with cyclosporin (which we are very hesitant to do due to the many potential side effects), or travel to Denver to the National Jewish Center where they specialize in the treatment of eczema in a comprehensive treatment program. I thought it would help if I could find real families out there who were maybe at one point where we are right now and what they did to help us with our decision. I would appreciate any feedback, good or bad, and really need more information about cyclosporin use in a child. Thank you.

By lizardwoman on Thursday, October 18, 2007 - 08:50 pm:

Kenny!
why is your doctor frightening you like that? that's not on and i don't believe it. i know steroids are bad (as i've discovered by trying to stop using the creams) but topical steroids are a lot less damaging than oral steroids as they don't affect the internal organs to such a huge extent. has your doctor talked to you about Cushing's syndrome? it's the result of long term steroid use. have you had the dangers of immunosupressants highlighted to you. i might sound a bit like a preaching hippy but pharmaceutical intervention isn't always the way, especially if it's killing you! in january i had the worst episode of my life due to head to toe infected eczema but i truly believe that i might be able to ditch the steroids in the next few months after having used them for 21 years. it's expensive but i have been trying all the holistic therapies that i can...so far acupuncture has been helpful and i'm trying hypnotherapy, UV treatment and i'm putting all the advice i've heard into practice. i'm 24 and if i was told i had only 20 years to live because of eczema i would also be crying my eyes out! (not least because my pet lizard would probably outlive me). i may be ranting here but i have learned that doctors really don't know how to treat this disease, they can only treat the symptoms and, in my experience, they do that badly too. my father was a doctor and now he's not alive anymore i realise that even he was wrong about a lot of stuff concerning human health and treatment of chronic disease.
i'm gonna shut up now as my soapbox is breaking under the strain of me complaining, please just have a think about it...

By Naminder on Thursday, October 18, 2007 - 06:27 pm:

hey Kenny, how are you doing today?

By Kenny on Tuesday, October 16, 2007 - 07:43 pm:

Hey guys, just back from the dermatology there and we are going on cyclo next week. I've been taking prednisolone but the doctor told me that if i continue on it I'l have 5 years to live and if i take cyclosporin he can give me another 20 years. I dont want to die in 20 years, iam only 22 just now. Havent stopped crying since i got back from the hospital.

By Carl on Wednesday, April 18, 2007 - 11:03 pm:

HI Paulbos,

Sounds like you have exactly the same type of atopic eczema as i do. If you read my posts i think we have tried the same sort of treatments with the same negative outcome. I have been on cyclosporn for about 6 months now and am actually due to come off them in the next couple of weeks.

I hesistated for months too over whether to take them, my skin is much worse in winter and the cyclo really did help me during this difficult time. At the start they really helped, like anything i guess when your body is used to something the impact is less significant. The cyclo still makes my skin better than it has been but the very dry itchy skin, particularly on my face has returned. Im hoping for a warm summer which usually helps my skin.

Hope you get the relief you need paulbos, we all need a break from sore skin at some stage.

If you fancy dropping me an email or wanna chat on this board about how things are going please do.

Carl (cstatham200@aol.com)

By paulbos on Monday, April 16, 2007 - 09:14 pm:

wheatfreecured
Thanks for that. I am sure you're right and I know eczema is used as a sort of catch-all. He has actually suggested that it could be a dietary cause. I have tried a milk/dairy free diet already to no avail and interestingly have yet to try a wheat free diet though I don't hold out much hope. The reason being that in the past my eczema has cleared completely for years despite what I eat or drink. I will still try it though, anything is worth a try when you're desperate.

By wheatfreecured on Monday, April 16, 2007 - 06:11 pm:

Paulbos,

The reason I ask: I was mis diagnosed for 45 years... told that it was eczema... and it wasn't ... I am gluten intolerant... I can not digest Wheat flour.... many times, eczema is a broad stroke name for many skin problems, when it could be an allergy to foods... or stress can trigger it ... that is all, I would just like everyone to double check .. using the internet to find answers... and not to accept it as an absolute answer.

j

By paulbos on Monday, April 16, 2007 - 05:42 pm:

Wheatfreecured,
No, not specifically. Mainly generalised redness, intense flaking on occasion, extremely dry and injured where I cannot stop scratching. The doc has no doubt that it is severe atopic dermatitis.
But why do you ask?

By wheatfreecured on Monday, April 16, 2007 - 02:44 pm:

Paulbos,

Does your rash look like this ?

csaceliacs.org/dh_symptoms.php

Just a thought... copy and paste.. photographs half way down page.

j

By paulbos on Monday, April 16, 2007 - 01:00 am:

Hi everyone,
Just stumbled across this site as I searched for experiences of cyclosporin. My consultant will probably start me on this tomorrow after I have resisted for 6 months. Tried everything for my severe eczema all over my body. Creams of all types, chinese herbs, acupuncture, azathioprine, tacrolimus. Prednisolone was great at first but subsequent courses have been far less effective. Really scared of side effects with cyclo but after reading all your comments I feel more confident to take the plunge. Thanks guys

By plasmagic on Thursday, January 18, 2007 - 01:59 pm:

somethin to share

UTI, Sugar and Food Allergies
In natural medicine, it’s axiomatic that refined sugar and hidden food allergies are “behind” most recurrent infections, because refined sugar interferes with the ability of white blood cells to engulf and destroy microorganisms. 24 Food allergies appear to irritate and inflame "target-organ” tissues, making infection easier and may also interfere with the function of the immune system.

As long ago as 1976, results were reported from a study of 50 children (aged 4 to 18 years) who had chronic recurrent UTI despite urologic examinations that were otherwise completely normal. All the children had an allergic “background,” including hay fever, persistent coughing, nasal obstruction or other breathing difficulty (e.g. asthma, eczema, hives, or recurrent skin rashes). All were asked to follow elimination diets, take “anti-allergic” medication, and to receive specific allergy desensitisation. Of the 50 children, 42 (84%) “definitely benefited,” while nine had a “rapid and spectacular cure,” 19 had cures after six to nine months, and 14 were “noticeably improved.” Only eight of the fifty children showed no improvement. 25,26

Doctors working with the “natural” approach to health care find that eliminating sugar and food allergies is frequently sufficient to significantly reduce the incidence of any recurrent infection, including UTI, in both children and adults.

Jonathan V. Wright, M.D.
And
Lane Lenard, Ph.D.

By Woody on Wednesday, January 17, 2007 - 10:20 pm:

Hi Carl,
I have never really noticed any change in my skin re;alcohol and I have also been drunk on cyclo many times!(no probs/side effects)
Hope this helps,have a good time!

By Carl on Wednesday, January 17, 2007 - 07:50 pm:

Hi.

Out of interest how does your skin react to alcohol and has anyone had problems drinking on cyclosporin?

Look forward to hearing your comments

By woody on Thursday, January 11, 2007 - 11:17 pm:

Hi Carl/Dom,thanks for your messages.Went to the dermo on Tues and after much discussion I'm afraid the only option was to increase my cyclo again.To be honest I would have jumped in a flaming furnace if he had advised me to as I was so desperate for some sleep/itch relief.Unbelievably,2 days on and I am almost itch free and have had a decent nights sleep.
The dermo and I agreed that I need to be patch tested and this is being done in early Feb.
It was so hard to live with the itching/pain that the only solution was to increase my cyclo again(on 200 a day now). I really wanted to try and manage ny eczema just with emollients and willpower but it is so tough and I know that I will probably have to face this comedown again in the future but I am really going to try to be positive/stress free and prey that they discover a cure in the next 6 months!!
I can also say that I dont feel as I have encountered any side-effects with the cyclo as of yet(fingers crossed)and my blood/pressure tests have all been fine so far.
Just want to say thanks to you aswell for just having a different person to talk to about this disease.
Take it easy and keep me posted and I'll do the same

By Carl on Thursday, January 11, 2007 - 09:28 pm:

Hi Minesh,

Just visited by dermo today, he didnt really do a lot just told me to carry on with the cyclo, which i will prob have to take until mid april. I asked about implications of coming off the tablets and he said it prob would come back quite quickly. It is actually a little sore at the mo but not to the extent it usually is. I def have less itching in my face which was a very regular problem. Im pleased the azath is working for you. I am very frustrated by the fact these immunosupressants and such a short term solution that can lead to long term problems.
Hope your skin stays clear.

Cheers

Carl

By Minesh on Thursday, January 11, 2007 - 05:17 pm:

Hi Carl,

I have taken cyclosporin for 7 months previously. I was on 200mg a day. Initially they seemed to help but my skin continued to flare even whilst on the tablets. My legs were still bad. My eczema did not seem to clear as you have experienced whilst on these tablets. After stopping the tablets my skin became more troublesome after a couple of days!!

Side effects I noticed whilst on these tablets were increased hair growth and gum problems.

After having one month break from these tablets I decided to try azathioprine (another immune suppressent). I have been on azathioprine for about 4 months. My skin condition has improved and better to when I was on cyclosporin. I still need to apply Betnovate RD ointment & protopic to small areas that flare. I am hoping to come off these tablets in the next few months. Not sure if my skin will return to its previous state or not. I know that after taking azathioprine people normally have a good few months ezcema-so free.

I am taking 100mg of azathioprine daily. The side effects I have noticed is minor hair loss.

I too thought alot if I should take these strong tablets. I have tried many alternative medicines but nothing has helped and always returned back to steriod cream usage. I have taken a very small course of steriod tablets in the past (2-3 weeks) but on stopping my skin condition rebounded.

My derm says he want me to come off the azathioprine in the next couple of months if my skin continues to improve.

Take care
Minesh

By Carl on Tuesday, January 09, 2007 - 11:16 pm:

Hi Woody,

I have been on cyclosporin 100mg for 10 weeks now, My Dermo suggested i only use these during the winter months, which are by far the worse months of the year. I was able to enjoy Christmas and new year free of eczema for the first time in years. The dermo suggested on my last visit that i drop the dose to 2 tablets one day and 1 the next. I did this and my eczema started to reappear, so i reverted back to the usual dose. I have recently had a bad cold and my body did take 2 weeks to get rid of it, i am very concerned by the side effects of this drug on my immune system.
I had previously taken predisalone steroids when i had a bad flare up but almost as soon as i came off these i had an even worse flare up that i was being treated for. My dermo said that after taking cyclo the eczema would return but gradually and not as bad, i was sceptical of this and your post confirms this.
Really sorry to hear your skin has flared up again, no doubt i have got that to look forward to. i guess it feels even worse when you have been free of it for nearly a year. You remember how life should feel like. Dont despair woody, looks like there are a few of us in the same position. I did start to think i was a very rare case having such rubbish skin but now realise there are plenty of us.
I deliberated for months about whether to take cyclo or not, have you had any bad side effects whilst taking tablets woody?
Carl

By Dom on Saturday, January 06, 2007 - 10:57 am:

Hello Woody

Sorry to hear about that. I haven't taken cyclo but I had exactly the same side effects when I stopped putting steroid cream on my face. The skin gets hooked on it and you suffer withdrawal symptoms. Unbelievable burning and itching which I just couldn't get away from. Like having 3rd degree burns with an itch and the jabbing needles ring very true. You have to suffer this to really appreciate how bad it is. I was even sticking my head in the freezer to try to get some relief. Putting wet towels on my face at night was the best remedy.

I've got no answers I'm afraid but just to let you know I realise what you're going through. The burning died after a few weeks. I no longer put steroid cream on my face. I tried protopic and it was great. Cleared everything up in about a week but as soon as I came off it redness and burning returned. Not as bad as before and burning died after a week or so. I now get by using cetraben moisturiser and a little bit of betnovate on my neck. It's manageable at the moment but gets bad in cra*py environments, eg, smokey, too hot, etc.

Good luck with the dermatologist.

By Woody on Friday, January 05, 2007 - 10:36 pm:

Hi everybody,a further update from me.I have been on cyclo for over a year now and the first 8 months were great,stress and totally itch free.I have slowly been reduced on the cyclo from 300mg per day to 100 per day.Unfortunately my worst nightmare has come true and the last few months have got worse and worse and I am now at the lowest point that I have been at for years.My eczema has come back worse than ever and I now also get severe cases of hives aswell.I have not had hardly any sleep for the last week as my skin is burning and feels like needles are being jabbed in it.I am due to see my dermo on Tues and I am counting the minutes.Trouble is,I dont relly want to increase my dosage again as I dont want to have to suffer this comedown next time.Has anybody been through the same as me and suffered bad effects after reducing/coming off cyclo??

By Carl on Monday, November 20, 2006 - 08:09 pm:

Hi Everyone,

I have now been on Cyclosporin for exactly 3 weeks. Really pleased with results,my skin cleared up in less than a week and so far the only noticeable side effects have been some slight stomach discomfort and a few headaches. Although i believe side effects get worse over time.
I am due my follow up consultation this week.

Im glad this medication worked for your son Lucy i can only imagine the worry you must have had with possible side effects, i deliberated myself for about 6 months.
I am relieved that my skin has cleared up winter is normally a nitemare and this affects my work and social life. I would still like to hear from anyone else who has used cyclosporin for their experiences.

Many thanks

Carl

By LucyJ on Monday, November 13, 2006 - 04:52 pm:

Hi Carl,
My son went on cyclosporin for 3 months and it was fantastic!Hes only 6 and you can imagine my concerns but it definately gave him respite even if it was for three months.He had regular bloods taken to check any problems but all was good.He's been off it for 3 months now and eczema has come back but not aggressively we, at the moment have it under control.And if it gets so bad that we cant cope then we will put him on the cyclosporin again and yes there is side effects but isnt all drugs?and your closely monitered.Good luck.

By Carl on Monday, October 30, 2006 - 08:25 pm:

Hi Everyone,

I have just discovered this site after doing some research on cyclosporin.
I have had eczema my whole life really, which gets much worse in the winter. I have tried pretty much everything, steroid creams, moisturisers, various diets, chinese herbs even acupuncture. I used chinese herbs for 2 years and acupuncture for 3 years, all these seemed to do was cost me money, they didnt even touch my eczema.
My eczema is widespread and very dry, particluarly on my face and particularly in the winter, my routine consists of using a rough towel to exfoliate most mornings, not good for my skin in the long term im sure.
So at 28 i paid to see a bupa specialist, after nhs specialists didnt seem to have the time to examine me properly and all i got was that i was alergic to house dust mite. The specialist has just prescibed me cyclosporin,thankfully through the nhs and at the time of writing im on my first day, so fingers crossed.
I have read everyones comments and know this is not a long term cure but some immediate respite is welcome. Im also concerned about the side effects, the leaflet with the tablets makes scary reading. I would like to hear from people who have or are using cyclosporin.
Apoligises for the long post but hope you can help!
Cheers Carl

By plasmagic on Saturday, October 28, 2006 - 06:19 pm:

continous 2 years without break?? really afraid tat when u break it start to flare, oi reduce my prednisolone dose as i wanna vomit n havin headache.

By linda on Saturday, October 28, 2006 - 07:11 am:

hi everyone, i havent been on this website for a long time but wanted to help. i have been on cyclosporin before for a good two years. it totally cleared up my severe atopic dermatitis and it was great at first. after being on it for so long, i started feeling sick everyday. i would have the flu like symptoms and vomit anything i tried to eat. so my opinion is short term and reduce slowly- working with your derm ofcourse. Hope this helps.

By anon on Monday, August 28, 2006 - 08:54 pm:

hey.
i sent you an email,
i hope you got it.
its a start on somepointers on what you can do.
i hope you do follow it and it helps.

If you get a chance, do email me back..
would love to hear from you.

By depressed gal on Thursday, August 24, 2006 - 06:07 am:

Hi Anon,

Pls email me your advise to my email address..thanks

Have you tried any of the immumosuppresant medicine before like ciclosporin or Aza?

By anon on Wednesday, August 23, 2006 - 11:33 pm:

p.s
please try not to be depressed.

By anon on Wednesday, August 23, 2006 - 11:33 pm:

hi there.
i'm sorry to hear that you have serious eczema.
i have lots of advice that i could give, stuff that i have used myself and has worked.
may i email it?
or would u rather have it here.

i dont mind either way
i know the connection of constipation and eczema real well.

By depressed gal on Tuesday, August 22, 2006 - 12:45 pm:

Hi,

I am a 30 years old gal with serious eczema.

Has anyone experienced constipation or absence of menses while on cyclosporin??

I have taken only one tablet and experienced that, so not sure whther I shd continue or change to Azathioprine.. anyone pls advise..thanks

By sFMIiSyraL on Thursday, July 27, 2006 - 01:40 pm:

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By x8SDMrHdg7 on Thursday, July 27, 2006 - 01:40 pm:

k9RMm3La3PexVV 78HepgOmRQsr2 wrbBs3Mz4m9zT

By LucyJ on Tuesday, July 04, 2006 - 06:51 pm:

Thankfully my son is clear of chicken pox and the eczema has come back with a vengence.So we have decided to put him back on Cyclosporin.We are in our third week and his skin is lovely.He doesn't like the blood tests though but he gets a pound for every time he goes so hes rich!

By rene on Tuesday, July 04, 2006 - 05:54 pm:

I live in Oregon, one of the worst seasonal allergy areas. Both children had eczema as infants. My youngest, almost two has been battling with it. We are still doing food allergy testing with diet. We have found that he is most likely having environmental related allergies to grass and dust mites. Zyrtec twice daily has been the most help for him. My oldest with asthma is on immunotherapy at age 5. Seems to be helping a lot. We have a highly qualified allergist we are working with.

By tazilady on Tuesday, June 20, 2006 - 09:23 am:

Hi,
I have just be prescribed cyclosporin for dermographic urticaria. Have been suffering since mid october 2005. Nothing as yet seems to work. Am now on cyclosporin along with atarax, zyxal and ranitidene. Can anyone tell me what results they have had with cyclosporin and what are the effects when you eventually come off it. Please email me direct on taziracer@aol.com
Its really getting me down and I need to know what to expect. My specialist said its not guarenteed to work.

By Lucy J on Tuesday, May 30, 2006 - 10:11 am:

my son is nearly 6 and went on Cyclosporin just over 3 weeks ago hes had regular blood tests,and so far they've come back normal thankfully.His eczema before was unstoppable, periods of very angry sores and we tryed everything.Basically we were told by Dermo docs that nothing much else could be done only Cyclosporin.A massive inprovement in my sons skin has occured and for the first time in 6 years his skin feels like what a 6 year old should feel like;however,hes just caught chicken pox which are infected so we are feeling like the whole world is against us,AGAIN!

By woody on Wednesday, April 12, 2006 - 10:52 pm:

Another update,taking cyclo every other day now and half the original dose.Skin still ok but do get the occasional itch(maybe paranoia though as I am expecting the worst to happen!)
Still no serious side effects that I am aware of but have had slight increase in hair growth.

By laura on Thursday, April 06, 2006 - 04:17 pm:

I'm just about to be put on a course of Cyclo. Had my blood tests and everything is in shape to go. The only worry I have apart from the long list of possible side-effects, is the size of the capsule i gotta take!! They are as big as bullets and I already have trouble taking pills!

Wish me luck!

By woody on Monday, January 16, 2006 - 09:19 pm:

Hello again,just a small update.I have been on cyclo for about 8 weeks now and I am amazed at the improvement in my skin.I now have absolutely no rashes/scabs etc and I am sleeping perfectly well.Luckily,I have not suffered any form of reaction/side effects from the drug either.I can't recommend it highly enough.I am of course wary about what will happen when I start to come off it(doc said start to wean off in 7 weeks time),but I am just so relieved to have had this break from the suffering.Will update in due course

By emy on Tuesday, November 29, 2005 - 11:32 pm:

hi everyone,

i have been on cyclo now for just under a year on a low dose and i tell you it truly has given me a better quality of life than before. i still have patches of eczema on the face and body but this time it isn't red raw and extremely itchy and i can sleep at nights and concentrate on my work now. yes there are side effects - for me it's been headaches, nausea, anxiety (although i didn't realise this until later), tingly fingers, sore gums but they are much tolerable than being covered in horrible rashes all over. i get blood tests done regularly to check for kidney damage and so far my kidney is in good shape. i am lucky to have been refered by my understanding GP to an immunologist who argued that just because eczema is not life threatening it should not be treated less than other disases like cancer for example so she placed me on cyclo under strict monitoring and on a low dose. the only thing that i have to be very careful of is the possibility of infections due to my suppresed immune system. i try my best to have a healthy diet which will boost my immune system like more vegies, fruits, water, less fat and no caffeine (although at times i fail coz i do like the smell and taste of good coffee!). the next thing i need to work on is to improve my self esteem and confidence with the help of my psychologist and also get back to exercising more to release more 'feel good' hormones. for all sufferers out there don't give up - there is hope. you just need to find the best treatment for you and persist with it so you can control it.

By woody on Tuesday, November 29, 2005 - 08:46 pm:

hi everyone,
I am a 33 year old male and I used to have terrible eczema/asthma when I was a child/teenager.Both illnesses seemed to almost clear up completeley in my twenties but over the last two years my eczema has become horrendous.It has flared up just about everywhere and the itching(especially my scalp)is driving me insane.I always managed to keep it under control with a tube of Metosyn cream every now and again but have now been told after being referred to a dermotologist that I am being put on a course of Cyclosporin.After reading your messages I am hopeful yet still wary of trying it.I have always tried to believe that over time your mind could help you overcome the itch/scratch cycle but I feel I have finally been beaten!The other annoying thing is that every emollient I try seems to make me more itchy/blotchy.Has anyone heard of people being allergic to liquid paraffin?It's the one thing they put in all these emollients

By GetHelp on Tuesday, June 28, 2005 - 10:32 am:

I should add an update to my post from earlier this year. I had cyclosporin and it completely vanished the eczema and made me very happy. It's now a year since I took it. I have since had an episode of pancreatitis caused by gall-sludge (minute gallstones), not life-threatening but very dangerous and extremely painful. Though it is difficult to prove, I suspect that in my case the gallstones were caused by cyclosporin because I am in a low-risk category for gallstones, the timing, and because gallstones are a known possible side effect (see pubmed). Maybe it would help to watch the amount of fat one eats whilst taking the drug, to reduce the proportion of cholesterol esters in bile secretion - but I'm no expert.
I do not regret taking cyclosporin one iota.

By HKH on Sunday, April 10, 2005 - 05:07 pm:

I would like to hear from anyone who has atopic eczema plus chronic actinic dermatitis - CAD -(which is eczema caused by exposure to the ultraviolet in sunlight). I have been on azathioprene (AZT)for five years and should by now change treatment as I understand extended treatment with AZT increases the chance of getting cancer. In spite of the AZT treatment the CAD gradually gets worse.

By Hadenough on Sunday, April 03, 2005 - 06:37 pm:

Hi clareB, out stories sound almost identical. I am also 24 and get urticaria and eczema on my face (as well as everywhere else). I was on AZT for 18 months and although it was brill to start with it started wearing off. It really got me down but my dermatologist weened me off of AZT and onto Cyclosporin and within 3 weeks my face was brill. There are slightly different side effects and you still have to have regular blood tests. I felt a bit hung over for about 1 hour after i took them for the first few weeks and that was all. Well worth it! I still get small areas (my lip and eyes)but it really is so much better. Chat to your dermatologist about it! If AZT isnt working then you need to find something that is, its a strong drug to be taking if you are not getting any benefits!

Feel free to email me if you like!

Good Luck

By ClaireB on Saturday, April 02, 2005 - 09:55 pm:

Hi, Im a bit new to posting was was hoping for some advise. Im 24 and had eczema since I was born. It got so bad that I was put on azathiaprine when I was 15 but I got taken off it when I went to uni. Ive been back on it now for a year but its not working as well as it did despite being on a hefty dose. Is cyclosporin any better? More dangerous?Also, anyone had any experience of tacrolimus? Im having really bad flare ups on my face which are really getting me down, but i think the tacrolimus/protopic might actually be the cause

By ruth on Thursday, March 10, 2005 - 03:22 am:

HI hadenough - that's great news!!!! - is fantastic to hear people getting better ( and more importantly feeling better)as their eczema gets more under control - its amazing often how much you get your enthusiasm back when you get some control over things. Hope it just keeps getting better and better for you!!!

By had enough on Tuesday, March 08, 2005 - 08:20 pm:

Hows it going guys? Long time no hear! I'm doing really well. Probably 5 out of 7 days i have urticaria clear face and my eczema is 95% clear! FANTASTIC!

By ih8eczema on Friday, February 11, 2005 - 08:29 pm:

hi
well thank you for the welcome. As i said at present things are going very well for me so i am happy and the eczema is at the back of my mind. Replacing it at the front is retched Uni work!! ahh well you can't win em all.
Had Enough, all i can say is stick with the cyclo, when i first went on to it it was a little slow to react, especially because it had been infected. But with time it really worked well. So stick with it. Glad to hear you didn't get hairy!! where abouts are you?

By ruth on Friday, February 11, 2005 - 02:52 am:

is great to hear from both of you - ih8eczema and hadenough that things are improving for you - even despite the frequent need for toilet trips. it is pretty heavy duty stuff - but thereagain - it is a pretty heavy duty job that you both need doing with your skin so its good to see that it is all paying off for you in not only the physical side of things - but also the emotional,social and psychological sides of life too. i hope that things continue to improve for both of you - keep us posted regardless whether good or bad. will keep my fingers,toes and whatever else i can get crossed (hmmm - no i'm not that agile!!!) for you despite being on the other side of the world. funny how sites like this just draw us all closer together. take care guys and get out there and enjoy your lives......!! ruth.
p.s. no doubt hadenough that you have spoken with your doc about this increase in voiding - just keep a record of it so that you can then tell him/her if it is getting better or worse - its probably all been said to you before in but just in case....

By HadEnough on Thursday, February 10, 2005 - 08:24 pm:

ih8eczema!
Brilliant news. I am glad that you are getting on so well with it! I have now been on cyclo for three weeks and in that time have slowly come off of azt. It hasnt worked wonders for me yet but i think i am a little better, and hey there is time yet, my body has been through alot in the last month!
Trouble is, I am always on the loo!. Gethelp, i know you said you had slightly more urination, but I'm like an old lady, even getting up in the night. Im glad my mum taught me to go to the loo before i leave the house anyway!

Cyclo may be the way forward but toilets are not!

I leave you with that thought!

By ih8eczema on Thursday, February 10, 2005 - 03:20 pm:

Hi people
Just thought i'd add a post here. i've been put back on cyclo after a period of a month off it. And please take my word for it, it's super, smashing, great! Honestly i've tried every other treatment pretty much, and this is the only one to make the EX DIE! HAHAHAHA (perhaps a little carried away with myself there). I am using it with eumovate as well, and the combination of the two are working wonders. On my arms (where i scratch less) it has gone, and on my legs where i scratch a little more (but still not a lot) it is gradually disappering. So if you reading this and have tried everything else and none of it has worked for you, try cyclo it has worked absolute wonders for me.

P.S. I don't work for the people that make cyclo (don't even know who they are actually)

By GetHelp on Sunday, January 30, 2005 - 01:29 am:

HadEnough -- don't worry about side-effects, I had none, no extra hair (I'm male but I'd notice), except slightly more urination.
It's now a month after I finished to course and my skin is still stable. It really was a lifesaver - I mean, I was severely ill with eczema, I had no skin, just oozing and infected sores all over.

By lydia on Thursday, January 27, 2005 - 12:50 pm:

Hello Bobby,

It's great to hear that the MTX is showing some positive result on you already. :-)

Atarax (25mg) sometimes helped and sometimes don't. No idea why but when it is working, it will knock me off to a good night's sleep and like you, groggy for the good half of the next day. My derm is letting me try another type of antihistamine, Doxepin that's already available in India.

Betnovate Scalp Lotion only helps in the first few hours after application for me. After that, the itch will get worst because the lotion dries up my scalp. :-(

By bobby on Wednesday, January 26, 2005 - 11:28 pm:

to lydia,

hope the steroids put you back on an even keel. i have some scalp problems myself, but the betnovate scalp lotion usually keeps the E at bay for a week or so. have you tried atarax for the itch. a couple before bed wipe me out, but keep me groggy at my desk for some of the following day.
the docs have worked me up to 15mg MTX from about 5mg in the first week. My derm thinks it's starting to work and my wife agrees. the pomphylix on my hands has gone and the chronic areas are less raised. I have faith that I'm going to get some kind of a break (albeit a potentially toxic one....without any sun).

take care. bobby.

By lydia on Wednesday, January 26, 2005 - 05:21 am:

Hello Bobby,

Thank you for your assurance.
I'm just into my fourth course of MTX now, a total of 4 weeks now (with the last two only 7.5mg per week).
I had another flare up over the weekend. My derm is going to stop the MTX treatment. He said that some improvements should be seen in the 2nd or 3rd week already but doesn't seem so for my case.
He doesn't think that MTX is helping me at all. So, right now, it's back to a titration of steroids and anti-histamines because the main problem for me is my itchy scalp and forehead. The rest of my body seemed to be ok so far.
I hope that the MTX will work for you soon.
I was informed that 15mg of MTX is actually quite a high dose to start off with. Got this information from a Psoriasis Group's Forum. MTX is more commonally used in Psoriasis treatment.
Cheers!

By hadenough on Friday, January 21, 2005 - 07:54 pm:

Hi Margin -Walker, thanks for you email, you may joke about buying a property far away, but that really is mu next plan when all these drugs are no longer an option. Move to spain or somewhere!
Good luck with the new doc!

Hi i8heczema, dont panic, you really didnt put me off! I did email my dermatologist the next day to ask if I might turn into a man but she assures me that i wont!! I actually start on the big C tonight! I'll keep you posted!
Keep fighting guys, we can do this!

By bobby on Friday, January 21, 2005 - 02:20 pm:

to lydia,

i was put on MTX about 6 weeks ago. I'm on 15mg per week, with 5mg folic acid to reduce the side effects. Nothing's happening yet, but the doc said she'll keep putting it up until we reach a therapeutic dose. she is confident it will dampen down the immune system when this dose is reached, but the patches of E that have been on me for a long time may take more time to go away.
MTX is a relatively safe drug when it's used at low doses, I have been led to believe. Children with juvenile arthritis are on it for years (as their first line of treatment). two doctors have told me this now.
It's also been around for about 40 to 50 years, so the docs know exactly what to do and what to look for while you're on it. just keep having your blood tests done.
people can be on it for years if they tolerate it well, apparently. I'm just treating it as another tool in my toolbag to try and fix the E. I can put that tool away any time and use something else.

go to www.medicines.org.uk and type 'methotrexate' in the search box for a leaflet about the side effects. it's comprehensive and well explained. just click on the 'view'
hypertext next to one of the dosage links

best wishes

By margin_walker on Thursday, January 20, 2005 - 09:39 am:

Hi Hadenough,

thanks for your email, I've replied to it with a masterpiece of pure wit and imagination (yeah right!) written in between bouts of itching.

I went to see a private (BUPA) dermatologist who said cyclo' was my only feasible option. He could prescribe it for me but for what it cost I could get a mortgage on a second home in France or a mansion on a large private estate in Latvia. If I had the money!

He was a lovely chap and really wanted to help me so he's referred me to a colleague of his at Liverpool University Hospital. Apparently this man is "young and aggressive in the way he treats eczema and isn't afraid of prescribing potentially dangerous drugs". I'm not yet clear on whether he'll be able to prescribe cyclo' to me on the NHS for free but if the BUPA man is sending me there then it must improve my chances a bit.

It is ridiculous having to fight for a drug which will massively improve the quality of your life. Just because it's your skin and not life threatening doesn't mean it should be ignored by general practitioners. If my liver, heart or kidneys were in a similar state of chaos as my skin they'd certainly give me the medication I needed. My skin may be my largest organ but it's seemingly the most ignored organ of my body by doctors.

Now, let's see if I can post this once this time without somehow duplicating the message!

By ih8eczema on Wednesday, January 19, 2005 - 08:54 pm:

Hi hadenough
I think i made a mistake in saying about the hair thing, yeah thats what happened to me but everyone is different. I got none of the other side effects that i was told were possibilities. People will react to the treatment in different ways. The results that i had from the cyclo were so good that it would be stupid to pass up the opportunity to see what happens to you. While i was on it i was buying T-Shirts and all sorts without even giving a thought to the dreaded EX.
I hope i have not put you off in saying what i did, that was not the purpose of my post at all. My main message was its great while your on it, however for me as soon as you come off it makes it that much harder when the E comes back, because you will have got used to life without it.
But you should absolutley try it, you never know for you it may disappear forever!!

By hadenough on Wednesday, January 19, 2005 - 07:53 pm:

Hello ih8eczema

OK, I am really concerned about this hair thing now. I have agreed today to swap from azt to cyclo as the azt is not doing its job anymore. but now i have read you message and im panicing!

You may be a 22 year old bloke with a hairy back but I have to say I think that could be more attractive than a 24 year old girl with a hairy back!!!!!!!

Is cyclo a bad idea?

By hadenough on Wednesday, January 19, 2005 - 07:47 pm:

margin walker

I have emailed you with more details but YES I am on azt on the nhs and am in the process of swapping to cyclo.
I have a prescription prepayment certificate which costs about £130 a year, alot less than a mortgage!
Good luck, you may have a fight on your hands but demand that your GP refers you to an NHS dermatologist ASAP!

By ih8eczema on Wednesday, January 19, 2005 - 12:26 pm:

Hi
I've never posted before so forgive me if this rambles a bit. Cyclo, as it has become known as in my house is a strange treatment. I have suffered from eczema since the day dot, however it only got REALLY bad when i was 15/16ish, having tried everything else my specialist finally gave in and put me on cyclo therapy. I was warned of the severe side effects, liver probs, kidney probs, anxiety etc, you all know the rest! The first run of treatment worked wonders, i couldn't believe how effective it was, after 12 months of taking the treatment i was confident enough to see what would happen if i came off it, specialist agreed. Thinking that twelve months of pounding my immune system would have learnt its lesson! Within 2 days my skin was blistering and going crazy. after a breif intermission of trying t control it with the crappy creams that have never worked, I was then put back on the cyclo. This time the drug was no where near as effective whereas before all signs of E dissappered, this time i still had large areas of what i would class as E, just not open and weepy.
In my opinion people need to be careful with this treatment, yes it does work but only when you are on it. It is a no nonsence drug which is pretty hardcore on the system. Fortunatley i didn't really get any of the side effects that were threatened, apart from hair growth, which ok is not the worst one to get however, i'm a twenty year old guy, getting a hairy back and sholders is a big deal! What girl finds that attractive?
Hope i've not waffled on for too long, please forgive bad spellings and grammar.

By Boc on Tuesday, January 18, 2005 - 08:08 pm:

MTX (Methotrexate) is a third choice of immunosupressant after Ciclosporin and AZT. I am getting Ciclosporin on the NHS, it was prescribed by a consultant. I am going to try and change over to AZT in the next 2 weeks though as my consultant wants to give my kidneys a rest from the Ciclosporin.

By ruth on Tuesday, January 18, 2005 - 01:13 pm:

margin - i am in Aust and we have done both the cyclosporine and AZT therapies. Because my daughter is registered as having a chronic disability (ie eczema and asthma) we still have to pay for the meds but it is only at concessional rates because of the fact she has a concession card. i doubt whether these treatments would be offered free regardless of where you live - but if you are registered with your health beneficiary i.e the NHS as having a disability - then i am assuming that you should get this at concessional benefit prices.
Cyclosporin and all the oral immunosuppressant therapies take time to work - it isn't an overnight thing - and dosages may have to be played around with. I know what you mean about the cost - I nearly died when I found out how expensive a small bottle of cyclosporin syrup for my then 4 yr old cost. It was like liquid gold! Our consultant told us that AZT is a lot cheaper than cyclosporin to purchase - but like you say - its almost totally unaffordable if you don't get it subsidised. Even the protopic ointment......its incredible how expensive it is.
If you aren't on a disability concession - then get your GP/specialist to fill out the necessary forms for you and lodge them with your relevant social security agency. Once you get registered - you can get affordable treatment.......we only found out about eligibility for this many years and thousands of dollars later!! but even now it makes a tremendous difference.
Remember that with all treaments there are potential side effects - this doesn't mean that you will necessarily get some or all of these - so its all about trade off. as you can tell from previous posts - these drugs have in fact given back people their lives - even if it only be for short periods - like it did with us. Weigh up the situation of where you are and where you want to be with things - sometimes you just have to bite the bullet and try it - you might be pleasantly surprised to find it makes a positive difference to you even if you do get side effects. Nothing in life is risk free. all the best

By margin_walker on Tuesday, January 18, 2005 - 12:36 pm:

**For those taking cyclosporin in the UK:**

Are you getting the treatment free on the NHS? I paid to see a private (BUPA) consultant yesterday who has said that my only option now is to take cyclosporin. We are as yet unsure whether my GP will fund this on the NHS. However, if I have to pay for it myself the first month alone will cost £700 once the drug, 4 blood tests, urine tests and chest x-ray have been done, and I can't afford this! It's like having a second mortgage!

So, are you getting your cyclosporin and related blood tests done under the NHS? And, what was your doctor's attitude towards this? Was it a "Well, this is the only treatment that will work so let's get you on it"; or more of a "Hmmm . . . . well . . . . cyclosporin is an expensive treatment and your life isn't at risk here is it? And we don't want you coping with all of those nasty side effects now, do we? So let's keep going with the steroid creams and see how things work out"?

Itchy regards,

MW

By margin_walker on Tuesday, January 18, 2005 - 12:17 pm:

**For those taking cyclosporin in the UK:**

Are you getting the treatment free on the NHS? I paid to see a private (BUPA) consultant yesterday who has said that my only option now is to take cyclosporin. We are as yet unsure whether my GP will fund this on the NHS. However, if I have to pay for it myself the first month alone will cost £700 once the drug, 4 blood tests, urine tests and chest x-ray have been done, and I can't afford this! It's like having a second mortgage!

So, are you getting your cyclosporin and related blood tests done under the NHS? And, what was your doctor's attitude towards this? Was it a "Well, this is the only treatment that will work so let's get you on it"; or more of a "Hmmm . . . . well . . . . cyclosporin is an expensive treatment and your life isn't at risk here is it? And we don't want you coping with all of those nasty side effects now, do we? So let's keep going with the steroid creams and see how things work out"?

Itchy regards,

MW

By lydia on Tuesday, January 18, 2005 - 03:30 am:

I was started on MTX 2 weeks ago, 15mg each of the first 2 weeks and reduced to 7.5 mg this week. So far, no obvious improvement. But as I read more about MTX, realised that I did have some of the side-effects such as nausea, fatigue, diarrhea. Another thing I'm experiencing is feverish feeling, dry and chapped lips, sore throat. Anyone knows if this is also the side-effect, please? What is the long term side effect of MTX? I'm really worried over this and how long should I expect before I'll see more improvements?

By Boc on Monday, January 17, 2005 - 06:57 pm:

I am on ciclosporin and it changed my life, my eczema was out of control and making my life a misery. OK so if I stop taking it, the eczema comes back but it has been a godsend.

I haven't really experienced any side effects, the only one being Anxiety but it's much less of a problem than severe eczema!

By Had Enough! on Monday, January 17, 2005 - 12:28 pm:

Hi Everyone

Get help, it was lovely to open this today and read your message. I currently take azathiaprine and have seen my dermatologist today because my eczema is coming back thick and fast. I have been taking it for about 1 1/2 years and the doc thinks that my only option is to swap to cyclosporin as it work slightly different. Problem is...like any drug...i am scared of the side affects. Increase hair growth (on my head would be good but on my face would be VERY bad!), burning skin (it burns enough already thank you!!!!), sickness (just what i need)...oh and the list goes on!!!!

I must say that i am tempted anyway as i am so low at the moment. Did you have any side effects? How long did you take it for?

Look forward to hearing from you (or anyone else that has experienced cyclosporin!!!!)

By GetHelp on Sunday, January 16, 2005 - 05:06 am:

Cyclosporin restored my faith in Western Medicine. I had such severe eczema this year that I couldn't go to bed or wear clothes because I didn't actually have a surface. I was convinced I could cure myself with all kinds of quackery but I was gradually getting worse. Finally I luckily despared and saw a specialist and he put me on Cyclosporin.
Within 3 days I was stable and in a week I was fine. It was great. I had good healthy skin all over nearly and I stopped thinking negative thoughts, my habits changed, I became more sociable, I could where t-shirts and shorts, my response to temperature was correct (I was always shivering before).
Above all, because my body didn't constantly torment me with itching, crawling, and freezing sensations, I could actually think straight. It was like getting an intelligence boost. My mind was quiet and calm, able to concentrate. I didn't fear whether my I would curse myself with worse skin tomorrow by eating an egg today.
Now that the course is finished my skin is OK. It's not quite as good as it was when I was on Cyclosporin, but it remains quite stable. I'm really happy with it.
So I urge any stubborn people like me who think that thinking nice thoughts and drinking herbal teas will shift their eczema -- it won't work! Your body has a genetic fault that is quite serious and you can't do anything about it except ask someone to help.

By ruth on Friday, November 26, 2004 - 01:59 am:

To Nikki - it may be what i said in a previous post about doing essentially a 'cold turkey' with coming off cyclosporin that Bek was alluding to. Many drugs need to be taken over a period of time before it appears that they are having any beneficial effect - it takes time for the body to make biochemical changes and adjust - antidepressant mediations are a good example of this as are steroids, cyclosporin, AZT etc. By immediately stopping taking these medications - particularly if taking in a high dose - you can get what is called a 'rebound' phenomenon happening i.e. the disease process temporarily comes back more severely than before as the body responds to the lack of medication. This is why when you take oral steroids for example and suddenly stop taking them - you often get a resurgence of the eczema again 'rebound eczema' which can be very nasty followed by a period of time as the body readjusts and eczema severity declines. this is why ideally you should be 'weaned' off these types of medications - but there are cases where this is not possible e.g. where kidney function is being impaired and must be stopped immediately. you tend to get less over-reaction if weaning happens because the body is given time to acclimatise to the reduction in drug dosage. i hope this helps to clear it up - when you are coming off the drug - try and build up your topical treatments more and more - again for the same purpose. i understand how you feel about the oral immunosuppressant meds - it broke my heart having to put my girl on it (when she was only 4)- but at the same time it gave her something that no other treatment could - i.e. a quality of life. It is this that I focus my energies on - if we had to go back to taking them again - we have done both cyclosporin and AZTby the way - then I would - even knowing the risks.. nothing in life is risk free and if these meds give you the ability to have quality of life - then get out there and enjoy yourself! it what's its all about

By Bek on Thursday, November 25, 2004 - 01:05 am:

You are all correct!
I am the same and as you say, it is only skin deep, and well, to keep me "sane" I just use the saying "there are people worse off", it probably sounds like a cop out, but at the same time, it helps me deal with it in my own way.
Since i have been on the Cyclosporin, my confidence has boosted, and even if my skin does get worse once I am off it, at least i have had my "shining moment"!!!!
I am looking forward to it in a way also, to get off the drug - the side effects are some days just horrible - vomiting, headaches, tiredness - my Specialist said that this should subside soon, but I wonder cause i have been on it now for 6 - 7 weeks! Interesting.
Well, it is great to get the views etc from everyone, it makes me feel like I am not overreacting to my condition, and thinking that maybe I am a weak person for not being able to handle the situation some days, but listening and reading what everyone else has to say, I am now feeling the total opposite.
Thanks everyone.
AND I would be interested in the foram etc etc etc - I am actually based in Aussieland - Victoria, but would still be happy to participate - as that type of thing would be even better!
Have a good day everyone - maybe scratch free :-))

By rlp on Thursday, November 25, 2004 - 12:53 am:

hi,
after reading a few of the messages here,i felt i should add some with some of my feelings . (feel like i'm gate crashing here, oh well! lol)

Eczema is only skin deep. I've had it since i was a kid, and it will always be part of me, but recently i've began to understand how important it is to share the "burden" if you can call it that we carry with people around us. I've began to feel more comfortable in talking about my eczema to thoose around me, and i'm all for reaching out to other eczema sufferes and being part of that verbal release.
I think its great that we can channel our feelings about it especially on dedicated pages like this. A problem shared is a problem halved,okay maybe not so much in our case, but you get what i mean.
I feel for thoose who have such a hard time with it, i know that from my own experience, been there, done that & scratched the t-shirt.

keep trying, and never give up, and never give in.

If anyone considers setting up a local forum, get together or what ever you want to call it, i'll be up for that, and i would like to get to know more people with eczema, share views, tips, experiences and all that to.

all the best for everyone, and keep in touch.

By Nikki on Wednesday, November 24, 2004 - 12:44 pm:

Thanks for replying so quickly Bek, its lovely to hear from you! Having a bad skin day today so its really good timing to read what you said! (I just wish this AZT was stopping my bad skin days!)
I totally agree, its not sympathy that any of us want just understanding! I work in a hospital and for somewhere that is meant to be full of caring people, you would not believe how insensitive people can be! Infact, it was a comment made by a consultant in the summer that finally got me signed off sick!
I feel the same about AZT as you do about cyclosporin. It was a really hard decision to go on it in the first place. I had not heard that the eczema is likely to some back worse when we come off of it, but i had figured out that it would seem SO much worse after spending a period of time relieved from it! I'm dreading the day im told to come off of it! However, my sister came off AZT about 12 months ago and her eczema has only just started to come back and so far it is reasonably managable. So its not all bad news!
I'm glad to hear that you have found a good support group for your alopecia too, I'm really beginning to realise how important it is to talk to people who understand us.
Thanks for your support!
Nikki
p.s P20 is a really good once a day sunscreen recommended to me by my dermatologist to help deal with the lack of sun thing! I get away with using it (even when my eczema is not too good!) It might be worth a try!

By Bek on Wednesday, November 24, 2004 - 12:45 am:

Hi Nikki
Know what you mean - I was the same as you until I stubbled across the site myself. And feel like I am reading what I have written when reading your story - does that make sense?
Even though my skin isn't too bad at present - I do know that when I do eventually finish on the cyclosporin (if my Dr takes me off it)that it probably will reappear and from what I have read "with a vengence", so basically I am going to enjoy myself until then.
In my present job, I have been with them for nearly 2 years and in that time I think I would have had a lot of time off in sick JUST for my skin. They have been really good, but as you say - no one really understands what I am going through. AND sometimes I get the impression that they think I am a hypocondriact but then again I am probably just being sensitive to it all.
It is easy for a healthy person whom has never really had anything wrong with them to actually understand what you are going through and one workmate especially upsets me, due to her making my "illness" out to be a joke. I have come into work before looking like an alien not able to walk properly everything - and you can totally see what is wrong with me and I get the comment "your looking well today ". Well I am like thinking "what does it look like" what a stupid comment - but at the end of the day I dont want sympathy, but maybe some understanding from people.
Anyway......sometimes makes me wonder what I have done so wrong in my life, as I am 28 and also suffer alopecia for the past 3 years, but am over that (in a way now) due to support groups etc, and have a fantastic husband, and have a fantastic Wig, so I couldn't ask for more.
Now we just have to find a cure eczema!

By nikki on Tuesday, November 23, 2004 - 07:44 pm:

Hi Guys

I just wanted to say that it is lovely to read you all supporting each other. I have just stubbled across this site and am really please I have!
I am 24 and have had eczema all my life, although it has been progressively worse since I was about 16.
The last 5 years have been terrible, I graduated from uni and was bandaged pretty much everywhere but my face. About 18 months ago I hit rock bottom and was put on AZT. It really has made a world of difference and I have to say that it is hard to think about how bad it used to be. The bad news is that although i am taking a high dose it is still not keeping it at bay, particularly the urticaria on my face (which is the bit i hate the most!). Now I feel that Im taking drugs that i never really wanted to take and still am pretty low about the way I look and feel!
I'm now looking really hard into food intolerances and am seeing an immunologist in December, another appointment to add to the list.
I had some time off work due to eczema back in the summer and although work were ok about it, I dont think they will ever really understand how I feel when I go in some mornings.
I will make sure that I keep looking at this site though because it is really good to hear from people who understand.
Keep up the good work supporting each other! Its brilliant!
Nikki

By Bek on Monday, November 22, 2004 - 05:27 am:

Isn't it just great to get everyone's opinion on things! I have to say sometimes I feel like I am going about things the blind way - feel my way until something happens.
My skin is still pretty good - have a bit of a breakout every now and then but nothing compared to how it was.
My specialist was that excited cause I had a patch of hair on my head, but yesterday I had a look and it was gone - so obviously that little side effect is having a good one. It didn't really bother me if my hair didn't grow back whilst on the cyclosporin as all's I was worried about was getting the skin a bit better.
Anyway shouldn't complain hey.
Bobby - I can remember the work thing - trying to get out of the chair and wanting to walk up the hall to get a coffee or something - it just sucks. Do you think anything is helping it to improve maybe just a fraction?
Also, with your leg, I had that in my arms about 7 weeks ago - they were huge and my whole face ended up swelling up also, and it took over 1 1/2 weeks to subside, it was just awful though, even my arms were going numb!!!
Just to depress you Bobby - sunny today in good old Aussie land - 28 degrees! And I have been getting out in the garden - but at night after tea as it is daylight saving at the moment so we get a fair bit more time at night.
Anyway, thanks again guys for your advice, as always it is just such a great feeling to know I can get other people's help and opinion - it does tend to go a long way.

And Ruth - I hope your daughter is improving. Has the eczema developed heireditary or just a freak thing in the family? My father had eczema as a child and my Mother has really dry skin - unfortunately - I got both - bad mix. I just wonder though, as I do tend to worry that my kids one day could develop it (when they come of course!).

By Bobby on Thursday, November 18, 2004 - 02:46 am:

Hey everyone,
Sorry to wade in so late, but the eczema has had me on the run for the last couple of weeks. My ankles and feet became swollen, and after initially thinking it was an infection the docs discovered it was general tissue inflammation caused by severe eczema. had to keep my legs up,down a lot of antibiotics, dermovate my feet and lower legs and cover them with tubular bandages. it's working and I don't mind the tubular bandages so much - stops me scratching and it's cold in the UK now so they'll keep me warm while I wait for the bus (when and IF the ruddy thing arrives).
I was hobbling badly for a while and getting out of my chair was a grit-my-teeth mission at work. My feet were also quite freaky to look at, and I just about lost the plot at the docs - thinking 'great, I'll just take another step down the quality of life ladder, shall I'. But I can look at them now without getting upset - and i've managed to drag myself along to all the 'having a baby' preparation classes with my wife.

Bek - Great news! It's a really good sign that the cyclosporin has worked so quickly and so well. in answer to your question, i had to come off cyclosporin after about nine months because my renal function declined, but a lot of people tolerate it better than I did. Also the docs hadn't checked my bloods for a while, so when they did I had to come off it all in one big hit...because things had dragged on so long. No other big changes though. I did get a bit of extra hair growth around my ears, but it was never noticable - and extra hair growth is a typical side effect of the drug if I remember rightly. glad to hear it's having such a positive effect on you life. like you say, keep the worrying to a minimum and just keep doing the things you enjoy. get yourself back out in the sunshine! - someone's got to enjoy it (England definitely won't be)

RE protopic ointment: It prevents my eczema getting worse if I apply it on the affected area early on. i apply it on raised and bubbly bits of skin and it suppresses my immune system in that area so the eczema doesn't get any worse. It also usually takes the redness out and, after a few applications, it gets rid of the eczema in that area completely (sometimes). It seems to work really well on my face because it is absorbed quicker there. basically I haven't used hydrocortisone on my face for the last three years because of it. For me, it doesn't work very well on areas of eczema that are fairly advanced -broken and weepy. But it is really good at finishing things off, once the steroids have got the worst of it under control.
Thanks for the kind words. I try to stay tough, but the eczema just breaks my spirit some times.

Ruth - thanks for your help too. yeah, shifting focus to the good things really does work, and I'm keeping a few goals in mind for the future (to keep myself going). Like you say, there's no point looking for understanding from everybody, because some people are just never going to give it. I'll just shift my focus on to what matters. just in case though, there's no harm having that sandpaper lying around!
Hope your daughter is doing better. If not, it's great that she has such caring and well-informed parents looking out for her best interests.

PS: The immunoglobulin may take about six months to work apparently. It hasn't done anything so far.

By ruth on Tuesday, November 16, 2004 - 12:42 pm:

Good on you Bek - that's great news to hear that you are out there getting back into things and having a great time. I'm glad the cyclosporin is taking care of business for you - even if its only a short time that you're on it - just enjoy the benefits it can bring. It is impossible not to worry about all sorts of things particularly when taking these drugs - often about not being in control of things in one's life i feel. Good on you for taking charge.
As far as the AZT goes - we are sort of just managing with the topical steroid stuff but it is prone to going haywire frequently anytime. it is still very itchy all over and she has constant areas of red,irritated and often bleeding skin that she tries to hide when in school - but i am despreately trying to keep her off the oral meds for a variety of reasons e.g. her age etc. Her skin would still be rated as severe - but i feel that it isn't as bad as how it was pre AZT - when it chronically looked as if she had been dragged behind a car for 10 km on a bitumen road - never had seen it so bad and infected. she is still periodically waking through the night - but no where near the 15 times we counted on one occassion!. makes you wonder how you survive these things sometimes.
DEFINITELY get the healthcare concession card - it really does make a big difference to costs of medicine. i initially felt not right about asking for government assistance having worked most of my life - but this is what this scheme is set up for and by being able to obtain your medicines at a more affordable price means that you can obtain the proper treatment you need - which in turn can help you stay out of hospital and save the govt money on other healthcare related costs - so is good for both!.
let us know how you go with this - and keep enjoying yourself. just make sure you take good precautions when going out in the sun - cover up, spf 30 + sunscreen, long sleeves, hat etc - sensible stuff that we all should be doing!. don't avoid the outdoors - get out there and enjoy it - just use good commonsense and keep skin covered/protected. don't let your life stop because of eczema - you're the boss and you are in charge!. all the best

By Bek on Tuesday, November 16, 2004 - 02:07 am:

Hi Everyone,
Sorry been a bit slack on updating to let all know my progress! Like you said Ruth - go out and enjoy yourself etc - and that I have.
My skin since being on the cyclosporin has improved dramatically probably about 75% - which is the best I could have hoped for - I have been on it 5 weeks, and all of my blood tests have been excellent etc and my specialist is very very happy.
I am still a bit worried about the side effects in the future and also if I did happen to get pregnant (by accident) whilst being on this drug and that is a constant worry for myself. But something not to worry about unless it happens - as I like to believe "worry is a waste of emotion".
Anyway, so far so good, I have been getting more sleep however the only frustrating is the "keep out of the sun" thing as my favourite past time is gardening and being outside doing something. Bobby - did you get any major side effects from cyclosporin drug? Or was it just when you finished on it?
The treatment you had in hospital just sounds so harsh and sometimes I think is it all worth it ?
Can you please explain the protopic to me? I dont really understand that one.
Bobby - you sound like an amazing strong person who has an exceptionally fantastic wife. Good luck with the baby etc.
Ruth - how is your daughter? Has there been any more improvement sincet the AZT? I haven't asked my specialist about it yet, but will this week's visit - and will also do the health card thing.
Anyway, it is so great ot know there is so many people out there with the same condition and if not worse - helps me not to feel too sorry for myself!!!

By ruth on Thursday, November 04, 2004 - 12:44 pm:

Hi bobby - sounds like you've been having a tough time with things - did the immunoglobulin infusion help do you think???. Did your doc wean you off the cyclosporin - or did he/she suddenly stop it? - just wondering as probably would have made you rebound like crazy if it was stopped quickly. keep going with the protopic - yes it can sting like mad on raw spots (like just about everything else put on the skin)- but hopefully some pain now will pay dividends within a couple of days. As far as the azathioprine (AZT)goes - how do you feel about going on that?. hopefully if can get get good control with the protopic - can then slowly wean you off/reduce the dose of the AZT. But then again - if this doesn't work - then stick with the AZT for a while - give yourself some time to catch your breath - you have got some exciting times ahead of you!. Focus your energy on yourself - try not to stress too much about what people may/may not be thinking of you at work (i know - is easier said than done). Remember everyone has their own faults/inadequacies - some of these individuals probably simply can't be bothered to entertain the idea of what it must be like for you. If they did then they might have to reevaluate their behaviour towards you ( & we know how easy that is for some people!). When at work - use this time as best you can just to focus on the job you have to do - don't go looking for understanding from these people if they won't give it to you - thats what your family/friends are for - you might be looking for it in the wrong people/situation. If that fails - then take some coarse sandpaper to work - and encourage your workmates to sand the top few layers of skin off their knuckles,nail beds, wrists etc of the hand that they use most - then givethem some tasks to do like wash up the lunch dishes in hot water etc etc (if i suggested that you do this to them then that would constitute an assault!). A simple exercise - but mightchallenge their views. Oh and if they don't want to because it would hurt/sting too much - then guess what!!! - isn't that what you have been trying to tell them all along??? I'm not going to label them all like that as everyone is different - but I think you know what I mean. Make time to go do something for yourself that you enjoy to shift the focus onto the positive things in your life. Try and eliminate - or at least minimise the negative impacts - if these people are giving you a hard time - don't invest the time/energy on them. What matters is how YOU are responding to this. Hang in there - hope the rest of your wife's pregnancy goes well for both of you

By bobby on Tuesday, November 02, 2004 - 03:05 pm:

to linds,

i 've been using protopic for a couple of years now. It's prescribed for the more severe cases of eczema (certainly in the UK) and GPs are more adverse to prescribing it than a dermatologist.

I've come off cyclosporin and replaced it with protopic. it helped contain the flares, but I was eventually prescribed Azathiaprine because, although the eczema was being contained, the rebound effect was too much for me to handle. Haven't tried Elidel - but, from what I see on other discussion boards on this site, some people seem to have had a better experience with Elidel than Protopic.

I've found protopic very effective on the face, but less so on thicker areas of skin. It can also have a very intense localised itching effect which can last for hours - but the eczema does become less visible fairly quickly. Initially, however, it can cause the eczema to become more raised.

Protopic is produced by a company called Fujisawa, and is the topical version of the oral immunosuppressant Tacrolimus (used to prevent organ transplant rejection).

By ruth on Monday, November 01, 2004 - 11:15 pm:

Linds - Elidel is relatively new to the market having only been available for the last couple of years (depending on where you live). It is indicated for mild to moderate eczema - but is also suitable for everyday use to help prevent flareups. What your doc is doing is to get you started on Elidel and then wean you off the cyclosporin so that by the time the cyclosporin starts leaving your system the elidel would have had a chance to start working. If you have had severe eczema in the past - which i am assuming given the fact you were prescribed cyclosporin in the first place - it may be pertinent to discuss with your doc whether tacrolimus might be a more suitable option as it is indicated for moderate to severe eczema. Obviously be guided by what your doc says - but ask him/her whatever questions you need to as well - it is a stressful time and you may well see a resurgence of the eczema again during and after the process of weaning. This may well be a side effect of the weaning process rather than a baseline level of how your eczema is - so keep thi in mind too that it may well end up that your eczema might go haywire for sometime - but this will be a transitional time for your body to adjust to its new circumstances. So don't lose heart too soon if you see it flareup during this time. These drugs take time to work - as you would well know - and they also take time to leave your system .
As far as whether Elidel is 'safe' - it has a relatively high safety profile following extensive testing and certainly one of the bonuses with this drug over the steroids is that you won't have the potential for side effects that the steroids can sometimes bring e.g. the skin thinning etc. Elidel's actions are purely immune mediated. Certainly - any form of topical treatment is safer to use than oral forms of the same class of drug because it is contained within the skin rather than affecting the entire body. Elidel and Protopic (tacrolimus) are relatives within the same class of drugs - tacrolimus is the topical version of cyclosporin.
Work out what questions you want to ask your doc - write them down before your appt and take them in with you - anything that bothers you is important to discuss - because it is important for you!. hope all goes well

By Linds on Monday, November 01, 2004 - 02:05 pm:

I have been on Cyclosporin for 3 years and my consultant obviously wants me off it. He has prescribed me Elidel to use while still on Cyclosporin - is this safe and has anyone come off Cyclosporin and replaced it with Elidel? Any advice would be appreciated as i am scared of coming off Cyclosporin and going back to severe eczema

By bobby on Sunday, October 31, 2004 - 01:39 am:

hey everyone. got out of hospital a while ago, after having my immunoglobulin infusion. the whole process was a nightmare. on a ward with people in their 60s complaining that they hadn't been ill a day in their lives until then, and that they couldn't stand being less active. I suppose it's all relative, but as a 30-year-old with a heavily pregnant wife, who finds simple movement and work quite difficult a lot of the time because of the pain and itch of eczema, I couldn't help thinking "try fitting into my skin sodden shoes, matey". reading, films, and work is about all i've got left. still I made an effort to talk to them and they were nice people with some difficult times ahead (not eczema related).
switched to a moisturiser called cetraben, which is doing more to help me than the infusion at the moment. But my hands have become riddled with pomphylix, which is getting painful at work. I tried talking about my condition at work but, after initially showing some concern, a lot of my work mates became indifferent and don't talk to me so often. I think they're silently coming to dislike me because my very presence makes them feel guilty about not being all that sympathetic. There's nothing wrong with being self interested - it's the not talking and avoidance thing I can't stand.
oh well. also tried some steripaste wet wraps on my legs recently. they worked ok and took the redness out.
Hope the cyclosporin is working out for you Bek. When you come off, ask your doc to wean you off it. I came off it in one hit and had a big rebound flare. Like Ruth says just enjoy the relief it will bring. It may be just what your skin needs to break that itch-scratch cycle.

By ruth on Sunday, October 24, 2004 - 01:04 pm:

Hi Bek -there is just so much ignorance associated with the level of disability that eczema can cause to not only those 'sufferers' but also their entire support network. I wish i had a dollar for every time someone has said that kids tend to grow out of these things - yes it is true for some people in that their immune systems adjust , but for many others this isn't the case - but they are left having to deal with all the misinformation that is out there. I think how many people like yourself and also ourselves when we talk about what this condition does to our quality of lives unfortunately label it as 'feeling sorry for ourselves' when in fact what we do not have is an appreciation or understanding by others of the real issues and affect that it has on us. What you and everyone else is expressing is frustration and pain of not being understood and heard - it can be a difficult and draining process.
Bek - i know that you have started on the cyclosporine and hopefully that should bring you some temporary relief. Perhaps ask your doc about azathioprine as well when you go in to see him/her next - it still is a very heavy duty medication but it has a higher safety profile according to our consultant- not as nasty on the kidneys as gets metabolised in liver.
Do you live in Aus?? - if so have you registered with Centrelink as having a disability. This will allow you to get a healthcare card so it will cut down the cost of the meds. just involves getting some forms from them and getting your doc to fill out some as well. eczema is recognised as a chronic disability. we spent thousands on meds prior to getting this card - still spend quite a bit but nothing like before!. i hope the cyclosporine works well for you - maybe just focus on getting your skin down at the moment to an acceptable level and go out and have some fun - when was the last time you had some fun and relaxation??. Make sure you look after your own needs in all of this - they are so easy to get put aside

By Bek on Wednesday, October 20, 2004 - 04:58 am:

I have to say how great this is to read through the discussion boards, and see that there is some other people out there going through the same type of thing.
My past few weeks have been the hardest I have had since I lost all of my hair 3 years ago. I have now been on the cyclosporin for 10 days, and I think - there is an improvement. Well, actually, my hands are the best they have been in over 2 years. However, I still have a lot of eczema on my back, but isn't quite as itchy as normal. When I went on the cyclosporin I was also on antibiotics as I had a very very bad skin infection - so bad that my arms and face and neck etc were like a balloon - puffy everywhere.
Anyway, I would just like to thank you all for sharing your stories.
I have been so down and out about it all in the past few weeks and keep on thinking to myself, when will I get a break - seems like my life has been up and down always. Like you say Ruth with your little one - that is how I was as a baby, so my Mum tells me. And now at the age of 28, married and trying to have kids and juggle a hectic lifestyle and career, it is rearing its ugly head. I am just so lucky I have such good family support and also such good friends.
I dont know whether I am looking for it but I feel that everyone at my workplace dont really understand. And when I do not come into work (which happened a lot a few weeks ago) they can not understand how a skin condition can be so painful and bloody annoying. It is so frustrating. But at the same time I dont ever really talk about my condition as I dont like bringing the attention to myself.
My dermatologist has been quite good, I had about 3 visits in a row crying to him and telling him that the UV is making me worse but he kept saying "it will start improving soon" blah blah. He wont put me back on prednisilone as I have had way too much of it in the past re: asthma and eczema and then telling me I have to go on cyclosporin and to stay on it for at least 3 months. He is starting to be pleased with the result, but sometimes he is so hard to read, and I think he is probably thinking "here comes the problem case"!
Whilst on the cyclosporin I can not get pregnant! So once again, it is ruling my life. But also at the same time it scares me thinking about having kids, as I am so scared that they will either be born without hair or with eczema! But then I suppose as long as they are healthy enough it shouldn't matter.
As you said in one of your postings Ruth that it does affect everyone and your way of life. I totally agree and my Mother would agree also. I just wish in Australia, we got a bit more help from the government financially, as I am spending a fortune each week.
Anyway, enough of feeling sorry for myself, I just wish everyone well in health and happiness.

By ruth on Wednesday, October 13, 2004 - 03:00 pm:

thanks again bobby - yes we have been down the road of wet wraps - they do work well if you can get and keep them on - we had a god awful time trying to do that - took 4 adults holding her down trying to drag these things onto her excoriated skin. she screamed throughout every episode of trying in pain & then would vomit as well. just couldn't continue doing it to her - in fact the nurse who was looking after her even walked out in tears - she was so upset with how badly it was affecting her. i demanded that she have morphine to get the pain under control as it really was so bad and every little movment including going to the toilet made her scream. must say - it had never been used for this purpose before - but it worked a treat - was amazing!. she was able to take a bath for the 1st time in 2-3 weeks, able to sleep and walk.

i have read that there is some link of coal tar with cancer - so no - even though i have tried the coal tar treatment, we don't use it. we were going to initially try the IV immunoglobulin infusions (as she also initially had a low IgG level- but that has now risen up to normal).

I really would be very interested in how this all goes for you and whether you find them helpful. Must admit have felt so fed up many times myself with the whole condition and what it is doing to al of us - if it isn't eczema then it is asthma - feel like you can't win. we really have had only a few months in her life where it all settled down for a while post AZT - couldn't believe the difference to our lives it made. NOw its all back again - just hate it. People reallydon't understand when i try to explain how bad things have been and the anguish of putting her on AZT caused us either for her at such a young age. I still find some of my family thinking that if we rub a cream on it will fix it despite everything i have told them - its like sometimes i still have to convince them how serious it really is. i also often find it difficult to work because i am woken several times a night with scratching, crying or unsettledness - even when i think i have some control over it - then with asthma thrown into it sometimes for good measure - its just a nightmare when there is no outside support. sorry - just having a bit of a dummy spit. i think one of the things that frustrates me the most about this is that i don't want peoples pity and i actually just want to move into the future without looking back into the past - but like with all chronic diseases - they don't leave you behind so you just can't get rid of it or 'cure' it ( i wish some people would work out this distinction and stop misleading others!! )- its with you always in some shape or form and its the learning & accepting how to live with it when its constantly intruding upon your life which is the hard part for me to swallow.
anhow - enough said - by the way i live in south australia....great little part of the world - cool winters but blazing hot summers. great wine growing districts and good beaches...good mix!

By Holly on Monday, October 11, 2004 - 06:39 am:

Well, sorry guys but I did bite the bullet and started on the Cyclosporin 5 days ago! I was hoping for an instant relief but to no avail, as I have a very very bad skin infection to go with it. I have had part of last week off work in relation to the skin and threats with a hospital stay (no thanks), so this is the resort I have chosen. So far however, there has been a slight improvement in my skin, however, my arms and face etc are all swollen which my specialist has informed me is due to the infection NOT the cyclosporin. Interesting.
I found it hard to read Ruth about your girl, my Mother continuously tells me stories of how my skin was like that when I was younger. I grew out of it for about 5 years, but as soon as I moved to another town (7 years ago) came back worse then ever. My childhood was mainly long stays in hospital with either the skin or asthma. I have tried acupuncture, and since seeing him my asthma has been excellent and I am also off the preventative medication (which are steriod based also), so at least now it is only my skin to tackle! Which mind you is enough!
Good luck to you all.

By Roz2 on Sunday, October 10, 2004 - 09:31 pm:

My last thoughts on the subject.

Sometimes it helps to talk of an analogy. It was interesting to read about Ruth's young child and her asthma episode. Over 98 percent of breathing disorders are completely cured by the Buteyko method including asthma (the 2 percent is taken up by lung cancer). Yet given that it is so successful, and so many people's lives have been changed, why do some poeple still use steroid inhalers etc? Isn't a cure better than some drug that only treats the symptoms, and not very well.

Your body is like our planet; just as man's meddling is causing global warming, so too is man's meddling causing ill health. Eat organic when you can, avoid dairy products, avoid processed foods, drink plenty of water, only use sea salt in your cooking, only cleanse and moisturise with natural products and get plenty of exercise and fresh air - your skin will thank you for it, so too will your liver and kidneys

By bobby on Sunday, October 10, 2004 - 07:31 pm:

Hi Ruth,

I'm sorry your daughter's having such a tough time. I know the frustration of trying everything only to get minimal or no relief. I suppose you've already been down the road of trying wet wraps and tar applications.
what about putting some potent steroid on the affected areas and glad-wrapping them. If it's any help, I'd rather have gone on holiday with bad eczema when I was younger than not at all. Any snaps of me on holiday come in damn handy when I'm feeling down about how much I've had to give up because of my condition.
i went to Greece with my wife a while ago and my eczema got really bad. still managed to travel around the whole of the island we were staying on and crank up a smile for the camera. it's a small achievement that i find hard to argue against.
This is my second time on AZT, and both times i've had no bone marrow suppression. I seem to tolerate it fairly well. I've been on it for 3 months so far and had weekly blood tests for the first eight weeks. For me, it takes the edge of the disease. the eczema is less likely to spontaneously generate in areas I haven't scratched, and my skin's response to any scratching is slightly more muted. The upper two-thirds of me is actually quite clear (ony a slight rash is visible at the moment) but my upper thighs and lower legs are quite bad (my lower legs and feet more so than anywhere else).
BUT, I have to go into hospital tomorrow for a five day stay. The docs are giving me intravenous immunoglobulin (which can only be given in hospital). they've had some good results with other eczema patients, although no-one seems to know exactly why. best wishes. I'll post a message when i get out.

Where in Aus do you live, by the way?

By ruth on Saturday, October 09, 2004 - 03:45 pm:

Thanks Bobby for your very kind thoughts and wishes. Unfortunately the topical steroids really aren't keeping it under control - we are sliding back into that horrible black void of extremely dry,red,irritated and bleeding skin that is impacting yet again on everything. we just had a short trip away and went to a lovely coastal town where my girl just kept asking the whole time to put her feet in the water so she could run on the beach. for most people this is one of those 'kodak' moments where everyone should be happy laughing and just enjoying life - and it would have been but for this blasted eczema. i just knew it was going to happen and surely before you knew it she came running screaming in pain out of the water as if someone had poured acid all over her. fortunately we have experienced this before - we had a separate water container that we carried just for this so we ended up dousing her in water as if we were treating her for burns. we had some startled looks from some people who must have been wondering what we were doing - but it is the price you pay. it is really hard to explain this sometimes to the doctors although ours fortunately is quite good and has had to endure screaming scratching and bleeding in his consulting rooms so therefore has seen it in full flight. sorry getting back to the point - the AZT dose we had to fiddle around for a few months to get something that was effective. i think we went up to a dose of 3mg/kg body wt - so maybe (depending on your weight and blood chemistry) you may be able to up it a little bit. one of the difficulties with this treatment too is that the effect isnt instantaneous and there often is a lag period of a few weeks before noticing a difference - so have to ride that out too. mycophenolate i believe is less likely to cause bone marrow suppression .....???(pretty sure - but don't quote me on it until i check it out again) and our consultant thinks that this may well be our next port of call if we need to go back on the oral immunosuppressants. Its absolutely amazing how many other medications to treat the eczema we didn't have to use when on the AZT when it had it under control - e.g. antihistamines, steroids, pain relievers etc etc - could have cleared out an entire cupboard full - but back into them again.
Adjusting to this chronic condition is the hard part - has so much of an impact on all of us in every aspect.
Do you have any side effects from the AZT? - how long have you been on it and how frequently do you have your bloods checked??. Have you had any bone marrow suppression - am really interested to hear how you go with it. thanks again for your kind thoughts and prayers - you have mine as well,take care, ruth

By bobby on Saturday, October 09, 2004 - 01:19 am:

Hi Ruth.
I hope the topical steroids are keeping you daughter's eczema uder control now. I'm currently on Azathioprine (150mg daily) but it's not really keeping my eczema under control. I had a session of EPD (enzyme potentiated desensitisation) a while ago and it has pushed the condition beyond the realm of my control. EPD does, as a rule, make eczema worse before it makes it better, but the flare-up has continued beyond what was expected.
I've been on cyclosporin before, but my renal function became poor and I had to come off it after only nine months. when i used it i was completely clear of eczema, but i'll never go back on it bacause the rebound effect is one of the worst i've experienced. I'm 30 now (originally from NZ) and my eczema has become a lot worse since i came to the UK six years ago. The only benefit has been access to Protopic, which has cleared the eczema from my face.
judicious steroid use and short-term use of 'safe' immunosuppressants, like azathioprine or mycophenalate mofetil (which I am yet to try), will hopefully allow me continue living my no-frills lifestyle; at least until i sell the flat over here and move back to the sunny south.
I'll say a prayer for your daughter tonight. I hope she's one of the lucky ones who get better in their teenage years.

By ruth on Friday, October 08, 2004 - 01:14 pm:

Hi Gaz- cyclosporin can affect kidney function whereas azt tends more to affect liver and bone marrow function. from what i have heard from our consultant and also what i have read in some medical research papers - azt does appear to have a higher 'safety' profile and appears to be somewhat better tolerated in some individuals than cyclosporine (plus of course is only a fraction of the cost that cyclosporine is!). our daughter became neutropenic (low white blood cell count) whilst on AZT - but the irony associated with this was that the more neutropenic she became the better her skin looked and felt! (had all to do with the fact that she had less immune cells reacting to allergens so less inflammation & eczema). we had to take her off it for this main reason - but it certainly did give her a brief period of time where she could do and participate in activities without being in so much pain/discomfort. your doctor probably is looking to give your kidneys a rest from the medication - our girl tolerated all of these relatively well apart from some nausea. just make sure though that you get the blood test done prior to starting AZT ( it measures TMTT - an enzyme directly associated with metabolism of azt) - it will measure your risk of potential bone marrow suppression. I know this might sound scary - but with careful monitoring we have found this medication to be the one and only thing that has brought us some real and sustained relief. I understand that this enzyme test is often not done prior to starting - often people are just put on the med and wait and see approach is adopted. Insist on having it done as will provide both you and your doc with much needed risk advice. i will be interested to hear how you go as a lot of people don't seem to make it up to this level of treatment. we were the only ones we knew who had had to resort to this - but now i realise i am not alone! all the best

By Gaz on Thursday, October 07, 2004 - 07:17 pm:

It's interesting you mention AZT, my consultant is talking about taking me off the Cyclosporin that has been working excellently for me for years and trying AZT instead. I think it has less harmful side effects as I know Cyclospoin can damage the kidneys.

By ruth on Thursday, October 07, 2004 - 03:09 pm:

Hi holly - i'm in Aus as well. We tried cyclosporine for about 3 months with our 4 yr old girl who has severe eczema but it didn't seem to help her at all - dose perhaps wasn't high enough but then again she didn't respond to tacrolimus either (topical form of cyclosporine). We trialled our girl on azathioprine (AZT)- another immunosuppressant - that is used widely for the treatment of inflammatory diseases e.g. Crohns, ulcerative colitis etc. Azathioprine is now being widely used in the UK as a treatment for severe eczema where other possible alternative treatments have failed. It worked really well for us when we finally got a good dosage worked out - the eczema all but disappeared and it seemed to induce a remission for a few months afterwards. but now that we have had our winter season with the colds/flu's & asthma episodes - it is well and truly back but we are sort of managing it with topical steroid creams as is. I think that azathioprine has a better safety profile than cyclosporine and there is a blood test that can be done prior to starting it that measures the level of a particular enzyme in your body so it can predict to some degree how your body will metabolise it (have a word with your doc about this). It is a big step to take - but at the same time have to look at it in the context of getting something that will work and give you quality of life. there will be several blood tests to check on you as you are on these medications so it will be screened pretty closely. we hated having to do this - but we had no option - it was that bad and nothing - including elimination diets etc worked for her. There is a strong genetic component with hers - her immune system is hardwired on overdrive. It really depends too on the type of eczema you have as to how to treat it. just give everything a go - keep an open mind - never know what might work for you, all the best, ruth

By Holly on Thursday, October 07, 2004 - 06:35 am:

Kindest thanks Roz, your advice does help immensely.
My Dr explained to me this morning that at my age he would not think that a change in diet would help my circumstances. It is hard to know who to believe sometimes - very frustrating!
I have been planning on doing a detox session for a few weeks, so I will probably do that now and look for results and then if I have to resort to the other later. I find that one person can really only take so much! AND I know that there are people worse off!
Thanks Again

By Roz2 on Wednesday, October 06, 2004 - 06:08 pm:

One more thing

Many people get eczema from food intollerances, the advice on my website (at least at the moment) is only for people whoes eczema is caused by the soaps, moisturisers and emolients that they use.

The simple way to test for a food sensitivity is to remove it completely from your diet for 1 month; it can take two weeks before you notice the improvement to your condition. Cows milk and chocolate are the two biggest offenders when it comes to food sensitivity; my friends sister comes out in eczema at teh slightest contact with dairy products.

But don't fall into the old trap - some people give up milk, and the next day their skin is worse, and they say to themselves well it can't be milk. This is rubbish, the antibodies involved in food intellerances can take upto two weeks to give you any symptoms of their activity - to put it anotherway, the eczema you get tommorrow may have been caused by the glass of milk you drank two weeks ago.

Trying quitting cows milk - that means all products that contain milk in its ingredients - such as yogart, cakes.

Kindest Regards

Roz

By Roz2 on Wednesday, October 06, 2004 - 05:46 pm:

Hi Holly

Have you heard the story about the old women who swallowed a fly. The simple fact is that doctors are good for only one thing - resetting broken bones/stitching up wounds. I know little about you, but I want you to think of this - if your doctor knew how to cure eczema, you would already be cured. What I am trying to say is that the latest treatment your doctor will give you, will probably treat the symptoms caused by the previous treatment that he gave you.

I would suggest to you that you need to detoxify your skin, and detoxify your liver
please have a look at my page on skin/hair third button down when you get to my site:
http://www.holistic-health.pwp.blueyonder.co.uk

The advice on my website for eczema is completely free, I get no commision from health product manufacturers. Ask your doctor if he has ever recieved commision for prescribing treatments that he has given you (you may be a little shocked).

Kindest Regards

Roz

By holly on Tuesday, October 05, 2004 - 06:27 am:

My Doctor wants me to start on the cyclosporine, however I am quite hesitant about it. Can anyone please update me on how their skin has been since "off" the medication. I am 28 and the skin is now starting to affect my life in a big way and starting to affect my marriage. Please help!

By Janet on Monday, July 07, 2003 - 05:06 pm:

My 10yr old daughter has been on cyclosporin - maximum dose since October 2002. The results have been fantastic but we have tried dropping her dose by as little as 50mg per day to wean her off it and have found her eczema returns overnight as severely as before she started with cyclosporin

By Kate on Tuesday, April 01, 2003 - 05:22 pm:

I tried cyclosporin for 2 months - with quite a high dose, my skin was about 98% clear - I didn't even need to use an emolient on most of it. I didn't have serious side effects but got a tingly face and a bit of facial hair growth (nothing wich couldn't be removed). The only trouble with it was that my eczema returned almost immediately after I stopped taking it. Bit of a bummer!

By Gaz on Saturday, June 29, 2002 - 05:02 pm:

I am on Cyclosporin, which is an immuno suppressive. It's superb, but bear in mind that it has a lot of side effects, including damage to the kidneys if not used properly, but the doctors make sure there is no risk of that happening by taking regular blood tests. It has nearly got rid of my eczema, which was absolutely terrible before I started on cyclosporin.

By katie on Friday, June 28, 2002 - 09:55 pm:

hi every one
i just want to know did anyone ever use an immuno suppressive treatment and how did you find it.
katie