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Happy new year to you all!
We've started a new thread for 2005
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Hi guys - better late than never i suppose - but wishing you all a happy and safe year ahead of all of us. Is so disastrous with what's happening in Asia at present - my thoughts are with anyone who is affected by this tragedy. Really serves a cruel reminder of the fragility of human life and how we need to cherish ourselves and those around us. Just goes to show we really are not in control of life as much as what we may want to believe.
Good to hear from you Scratchy and Bek - we watched the Sydney fireworks on TV (nothing quite on such a grand scale in little old Adelaide!)- would really like to see it in person one year soon.
Sorry to hear about the gastro problems Bek - would be good if your doc can give you a week or so to really get over this so can see where you stand (but thinking of the date now - is probably a week gone by already). Give your poor old kidneys and body in general time to recover.
Let us know what is happening - I can understand you feeling very apprehensive about this too - particulary when it has made such an improvement. If they do decide to stop it then can explore other avenues e.g. AZT.......but lets take it one step at a time.
Scratchy - I know what you mean about bawling in the bathroom - it feels very weird that our ensuite at home has become a place of refuge for me - I tend to do my best thinking and have my best breakdowns in this room of the house....everytime i see the statue of 'The Thinker' by Rodin - i think of myself sitting on the loo pondering life!!!.....and you think your life is sad!!!!. But it is the only place where you can get some space and time on your own to think over things (except of course when you have small children in the house....and that whole concept goes out the window).
I sincerely hope the best for everyone here for 2005 - be kind and sensible too yourselves. Most importantly - look after yourselves and like Scratchy says - get out there and enjoy life!!!
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Hi Everyone - Happy New Year.
Can you believe it has all been and gone all so quickly? Back at work and I do not feel like I have had any time off at all - but that is always the way with travelling and having visitors over the breaks.
My skin - hmmmmmm, had a breakout! Also, Boxing Day came down with Gastro - the worse I think I have ever had it- the whole family had it, and of course I got it also. Anyway, as a result sick sick and then the skin flared. Went and had the blood tests re: cyclosporin and then at the Specialist on Friday - and kidney count is up dramatically. He seems to think that it is a result of the gastro and being dehydrated etc, so back in tomorrow for another test and if it hasn't dropped he will have to cut it all out! Cross your fingers for me - I am fairly nervous about it as just when I am starting to feel great - i would not want this to ruin it all. So see what happens I suppose - no use in worrying about it - would probably cuase it to flare again!
I hope everyone is well - Ruth - how is your daughter going? I think of her a fair bit - she is one amazing little girl!!!!
Take care all.
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Merry Christmas to all. Eczema is alive and well unfortunatly. I wish everyone here a happy (itch, itch) new year, and hopefully there will be some hope for our skin in the NEAR future.
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Hey all
HAPPY NEW YEAR! May 2005 bring you happiness and prosperity. I so enjoy catching up on this site for a read every few days, and i thank you all immensely. I am blissfully clear skinned at present, having commenced a course of oral corts after tests came back clear. Am starting probiotic mix now to see if that helps me continue on this even plain.
Will be celebrating New Year here on the Coast with Big Screen of Sydney celebrations, campfire (first year not fire ban), and lots of friends from Coast and Canberra, and a few of those drinks, no doubt.
Hope everyone else having similarly fine time with friends. Will be thinking of you all, especially Ruth & Bek, when midnight comes around, and wishing you and yours a relatively itch-free 2005. All the best.
Scratchy
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I was born with full body eczema. I have itched every day of my life. Even if my skin is not red and rashy..it still itches..head to toe literally. I just stumbled on these sites. I have never met anyone who lives with this paticular type of chronic pain. Thank you for this site.
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Happy Chrissie to you too Bek - I'm just glad the info is helping - I'm still learning as I go too. Its good to have other people's feedback on different things and how they have handled them - because we aren't pages out of a medical textbook - we have to make fit these treatments in with the real world. Enjoy your E-free (or as close as you can get to it) break - if you do get breakthroughs (which may come in several days - weeks - just get into them with the topical creams asap). All the best to you and yours.......ruth
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I have to say, that finding this site has helped me immensely. I never actually thought that there would be something like this around, as you get the perception from people that it is only a 'skin condition'..... The comments you get from people - oohh, i get that, see i have a patch on my arm - and it when you look at it, it usually represents a mosquito bite! I am probably sounding a bit nasty, but them the breaks of living with it your whole life. Some days we all have good ones and then other's are just down right terrible.
Reading what you have written about the pro's etc of cyclosporin/AZT etc Ruth, I am so glad now that I have gone down the track of it.
I am still getting the odd break out, I have been on it since start of October (I think!), and went back to specialist last week and he has now dropped my dose in 1/2, so i am only taking 100mg per day - lets hope that the weight drops off that i have put on by taking it. So far my skin has not flared up, but then again, it has only been a few days, so I am just making sure that I am drinking the water etc etc etc.
Scratchy, in relation to the alcohol, I have found that I am fine drinking beer, but not to the extent of having too much and all of my tests have been excellent, my specialist is really happy with me, at least my body isn't rejecting the medication, so now I know that I have it to fall back on in the future when it does get so out of control.
I also have noticed over the past 12 months, that my skinned has thinned immensely, my veins in my arms and legs show very very clearly, and that is from all the cortisone that I use on it -I still use over a tube of Novasone (or elocon) a day but without it, I would be a mess, so I suppose I have to be thankful for that.
Ruth, in regards to the throwback, my father has history of eczema in his family however my mother's side has a history of very very dry skin - therefore, I was probably doomed right from the start. Both of the brother's suffer from it, but not to the extent that I do.
Ruth, you are also so valuable in regards to all the information which you supply, I never have been told in "lamens terms" the reason for eczema etc, or actually understood it.
My skin is temperamental, if I am really run down it can flare up, stressed, it can flare up, allergies, sometimes it flares up - it is always hard to pinpoint. I have had all the tests also, the patch testing there was no reaction to any, but with the skin prick testing, I had a lot of food allergies, especially peanuts etc etc, which most people who suffer from chronic asthma have. But at the end of the day, all's you can do is avoid them, but there is always something else out there that will trigger it.
But i have to say, that when you are down and out about it all, it is the family and friends that help me get through it, especially the weeks that i have had in the past few years having really bad break outs and ending up at the hospital to get injections and all that sort of stuff.
Sometimes all of us probably wonder - what have we done to deserve it, but at the same time I also tell myself that there is people worse off, even if I dont really believe it sometimes. And people who are dealt with these type of trials on a regular basis, helps them to become much more positive and kinder people - so I am glad about what I have been able to gain out of it all.
Anyway, I hope everyone has a very very merry christmas and I would like to thank everyone for listening to me whinge!!!!
Bye and I look forward to more updates of everyone's progress.
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Scratchy - that's great news about the bone density test - bit of a pain about having to get the bloods and urine test repeated - but i guess in the scale of things - as long as the results come back ok then it will be worth it.
ONe of the main differences between cyclosporine and AZT is that AZT is metabolised by the liver (whereas cyclosporine is eliminated by the kidneys) - hence the caution i assume regarding the use of alcohol. I would really wonder and question though whether a few social drinks would really have a major impact on your liver in any case. There are many other drugs such as plain old paracetomol in large doses that can do horrific damage to the liver - yet these hardly seem to rate a mention. I guess that that is a question for your specialist to answer and maybe for you to test out yourself if/when you need too.
I can fully understand not rushing ahead to go on this stuff - I am certainly a very cautious individual when it comes to trying new things and if at all possible then i will avoid it at all costs. If you can get by without having to go on these then that is fantastic - certainly do that if you can at all costs.
I'm really glad that there are some positive things happening for you - sounds like it is going to be a good chrissie . this is the good stuff of life - just enjoy it for as long as you can.
I would be interested to hear back from you about the infusion they were talking about for you.
If you get into the sun, lots of calcium - and go pumping some weights (weight bearing exercises increase bone mass and strength), i'm sure these will certainly help you reverse some of the effects. After all - its stuff we should all really be doing anyhow.
Loved the comment about the organism slip up - I've heard a few school and nursing students innocently confuse the two words whilst discussing biology - makes for a very strange but funny conversation - difficult to keep a straight face.
Have a lovely Christmas and New Years....keep focussing on the positives....all the best, ruth
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Scratchy - Thanks for the advice on the acidophollus. I'll check it out next week at the pharmacy
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Hi all
Well, I did get a good Christmas present after all. The bone density test was NORMAL - i had a quick peep at the spine one, and it's a graph like you see on growth charts with "Expected bone density" on one axis, and "Age" on the other axis. At 42, I was only a dot below the line. How rapt was I??? Then the not-so-good news - my blood and uurine test results hadn't shown up, so I had to have them done again. Will know about any other probs in early January.
So then the Professor said I can wait a year and have another bone density (and each year after I imagine), or I can start having Calcium, Vit D, and a drug infusion (can't remember the name - will look up and post later). Unfortunately the drug isn't on NHS, so I'd either have to pay to have it near home, or travel to Sydney to his treating hospital once a year.
I opted to wait a year and do it again.
And then I went Christmas shopping for the rest of the afternoon, and had an uneventful trip home!
Ruth, while I don't have very clear memories of my early years (I suspect from lots of antihistamine), I don't think I was (am?) as severe as your daughter - my heart cries for her when i read about what you've been through (for all of you in fact), but i remember having lots of shots, and the continual elimination thing. That still makes me irate today. Like her though, I am basically a reactive organism (not orgasm, as i accidentally said to one specialist - oops!) too. He said i may even react to my own staph! I'm going to self-trial the probiotic with acidophollus tabs - I'll get my pharmacist to help me find the appropriate balance.
While i appreciate your info and support about AZT, I'm still going to resist as long as possible, for one main, pathetic reason. I read you can't drink alcohol while taking it, and i'm reluctant to give up my small weekend indulgences until i absolutely have to. I'm smart enough to know that drinking is not that good for me, or probably my skin, but it's my one release to have a few drinks on the weekend - especially when i have friends down, so i'm going to wait it out as long as possible.
Meanwhile, i hope your daughter finds the right treatment for her - wouldn't it be a great christmas present for us all if the probiotics, with minimum to nil side effects, works for us all???? I truly hope so.
Thanks for your support, - my best christmas present has been finding this site! I look forward to keeping up to date with everyone through this fun, but stressful, period, and into the New Year! Hope you're all enjoying the weekend - it's beautiful weather here. Talk more soon.
Scratchy
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Hi Scratchy - how did your visit go with the doc as far as your bone density etc. It is important for you to find out what other options there are for you apart from just getting bombarded with the steroids all the time. Drugs such as AZT, cyclosporine etc are less familiar to the general public - and even many doctors than are the steroids. But, it may well be the case that for you (as it was for us) - was that long term use of steroids was really more detrimental in terms of its side effects profile than was AZT. We were closely monitored with blood tests etc (which to a 4 yr old posed another major problem of having to do - resulting in a general anesthetic each time - just to take blood!).
I would strongly recommend becoming more familiar with these drugs. The names alone are frightening and when you think that these are also sometimes used as chemotherapy, anti AIDS drugs - it really can be enough to freak you out!. It then becomes a case of the fear taking over everything - and you can feel terrified. Don't worry about feeling overwhelmed by what might be said about these - I was bawling my eyes out to the hospital pharmacist as she was trying to explain these all to me and console me at the same time. And just to top it off, i am a registered nurse...i thought i should be able to hold it all together, be the one in control with the clinical edge -but guess what - i'm human too and this is my daughter we are talking about. It is all raw emotional stuff.
It is a move to consider - but having said that - big benefits can be gained as well - and it is this which we need to focus on. We really had no options left to try - we were in a very desperate state and life for our girl was just pure misery and pain. It was rock bottom for all of us. I never would have believed in a million years that eczema could do what it has done to us all - and some people still to this day find it hard to grasp the sheer devastation of how it has affected our family. The AZT really did make an amazing difference - even though it might have been relatively short lived. But even some break from the constant irritation & pain was so much better than no break at all. There are many of the side effects that the steroids give that you WONT get with these drugs e.g. osteoporosis, moon face, diabetes, etc. If you don't get much sense out of your doc - ask your chemist/pharmacist - or even ask here. the more familiar you are with these medications - the less frightening they can become.
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Hi All - have been away on a short holiday to Sydney, Aust for a bit of a much needed break - was good fun - tiring but good!. Just to catch up, Bek I don't really have a history of eczema/allergies on my side of the family - but my husband's side certainly does - i think that it definitely comes through from this side. As far as our girl is concerned - it isn't one thing that sets her eczema off - it is very much the case that her whole allergy immune response is essentially 'hard-wired' to respond like this - so that unless they can find the gene(s) that cause this to happen and switch them off/turn them down - then we are basically stuck with it. So from that point of view - I don't even anticipate looking at or focussing on finding a 'cure' because it doesn't exist - it is a case of trying to cut out a path of how best to deal with it for you individually. In essence - it is part of her genetic makeup to respond like this i.e. to be hypersensitive. I was amazed when in the early days of her eczema when her skin was peeling off in layers and we got the skin prick test done that she didn't really overreact to anyone particular antigen they put on her skin - other than a slightly exaggerated reaction to egg white. I expected her to come up looking like the hunchback of notredame given that her skin was chronically so bad. But when it was explained to me how genetics plays a very strong role sometimes in eczema - it then made sense how it isn't all just related to food allergies etc (although we are all aware that this is/can be a component trigger). AS children grow and even as adults - our immune systems don't remain static either - there are times when e.g. stress upsets this balance so for some people - eczema may not be a problem in their day to day lives until they get stressed out about something and then off it goes. It is a very fickle thing.
We were involved in a probiotics trial too a few years ago with our local childrens hospital - we too had some success with this as well. I was able to tell them when she was taking the probiotics by the change in her skin - even though it was a double blind trial (i.e. neither the researchers or the patients knew whether they were taking the medication or a placebo) They have now expanded the study as they have had some promising results - so this could definitely be another worthwhile treatment to pursue. The bacteria are essentially the good bacteria growing in your gut - so it actually will have other helpful spin offs for health other than for eczema. Who would have thought eczema would have been related to having a 'leaky gut' - but as we found out (through breath testing/blood testing etc) - that's what our girl has - and it is proposed that by flooding the gut with the good bacteria - it essentially eliminates the bad ones and helps to prevent irritants/allergens getting through into the gut lining/blood where the allergic response gets triggered off. these good bacteria also help relieve indigestion and help breakdown foods more effectively/efficiently - so they are definitely worthwhile taking.
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Hi again - Scratchy, we do a lot of water skiing on Murray. I also suffer from alopecia and lost all of my hair about 3-4 years ago and in February I got the most fantastic wig - so now I can go swimming and skiing etc etc. But unfortunately the downside was that my skin blew up straight after I got the hair, so haven't really wanted to "bare myself" but the last couple of months I have been able to - thanks to the cyclosporin.
Anyway..........the cortisone - I found that everytime I went to my GP he would give me a dose - just to settle - all's it was like was putting a bandaid on it -however I suppose Cyclosporin is like that also - but i have done a fair bit of research (like Ruth I suppose) and NOT ALL cases are the same so I am hoping that I will be one of the few that it doesn't come back with a vengence - especially that i am in my best friends wedding in March and want to look good for that! Cross fingers for me. I just get worried as I am only 28 and all the drugs that I have had to take in my life - how am I going to end up - surely all the drug concoctions would have to have some sort of effect surely!!! My main issue was the cortisone because I used to take it so often and it makes you put on weight, thins your bones, makes you moody - and once again you can't go off it straight away however it was always reliable for a quick fix - but that is all it was!
Scratchy - so glad that your daughter does not have the skin problem - I still get worried thinking about it as does my husband, for when we have kids. Ruth - do you have it in the family - was it a throwback?
Augustsage - For my itching - well I am taking daily antihistiemine but also another that has been going around is Acidophollus (not sure how to spell it) - it is a natural bacteria and you can take it in tablet form or drink - it is a natural bacteria found in yoghurt. I saw that there was a case study on it in Perth but on children only however it was successfull - I started taking it and found results, but as with anything - my body got used ot it after a few months - but it did help with the itching almost immediately. My girlfriend who suffers from Psoriosis started on it also, and she has continued to have fairly positive results eg she was covered probably 90% at one stage in her life and from all natural alternative therapy, drug concoctions again and anything else she is willing to try (including the woollen magnetic underlay) she has managed to get it down to about 10% of her body.
Another thing - has anyone tried the Colloidal silver? That helped me to but once again for only over 3 - 6 month period. As with anything, I have always found that stuff helps but then your body gets used to the feeding and flares again. However, my acupuncturist told me it is a good thing for any person to take - cleans out your system.
I have found however, where i live now, it has been much worse since living here and I have lived here now for 7 years HOWEVER my skin was totally bad as a child, just like Ruth's daughter and went through my whole childhood with it - but I always found when my asthma was good - my skin was bad and the otherway around. However, there was also times when my skin was fine for 2 to 3 years. Hard to know what to pin it on - but sometimes I wonder that maybe it could be the chemicals in the air or Anything - we just dont know! I would hate to think of all the insecticides and chemicals that go on the vineyards around here - maybe that has something to do with it - wish there was some miracle test to be done.
Just remember these are just all opinions!!!
Has anyone been able to pinpoint what could be a major trigger for theirs - would be interesting to know.
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Ruth, thanks for the advice about the prednisone. You're a godsend. Am I right in thinking it's just your daughter with eczema, or do you have it also? What you said in another post about going in with all guns blazing makes a lot of sense to me. As that eczema study that was emailed from this website indicated, for most sufferers, the single most important improvement in their lives would be getting their skin back in shape.
I've just finished a short (two-week) course of prednisone and the skin on my face is once again smooth - hallelujah! There are residual scars that stand out a lot because I'm Asian, but I definitely feel a whole lot better psychologically. The rest of the body though is still peppered with nodules; showering doesn't burn like it used to, though, so that's good.
I'm worried that, as you warned, the eczema could reassert itself more forcefully now the oral course is over. One thing's for sure: the itching hasn't stopped. I've got a week before I see the doc again, so I'll keep a close eye on it. And I'll try to douse it with topicals, as you suggested.
Bek and Scratchy - I don't know if your trigger is the same as mine, but I spent six years in Hong Kong and Tokyo and never had a hint of eczema. I'm not kidding. The heat and humidity, uncomfortable as they can be, were actually good for my skin, even though I drank, smoked and generally ate anything I wanted to. I know that many Asian students and immigrants develop skin problems when they come to New Zealand, so I'm inclined to think it's some intangible in the air interacting with some intangible in our genes. I haven't had much experience of Australia, though.
I guess what I'm saying is that if climate is really that big a factor, we could be in a no-win situation.
By the way, does anyone have any advice for taming the itching? I'm trying evening primrose oil right now, but I've read that its purported benefits only kick in after months of use.
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hey Bek
thanks for the tips. i live in a humid area, and had great relief for the first yar or so after i moved here (from dry, artificially heated/cooled Canberra), but over time i've aclimatised, and now is usual stuff.
Off to Professor this Friday to find out about effects of cortisone - have had bloods and having bone density, then will revisit treatment options.
Ruth is a life-saver - I get a thrill whenever I get a message on here - it's great to know other people are facing the same challenges, and surviving. While those around us care, only those with eczema, and immediates (like Ruth), can totally understand.
On a brighter note - I've just been shopping with my daughter for an outfit for her Formal (Year 6) tommorrow night - It's great to not have to worry about nylon (scratchy), and let her pick anything - I'm so glad she doesn't have eczema!
Finally, does Mildura have a lake? Anything to sail on? Obviously I love my sailing, and think it's a great sport for other e sufferers. With Sailability dinghies you don't even get wet, but once you're out there you're too busy controlling the boat to think about scratching. And it's relatively cheap! This weekend will be our last sail till end of January. Boo Hoo.
Hope everyone enjoying the Festive Season.
Scratchy
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Scratchy - forgot to tell you - that we have major problems with flies - we are in Mildura - and it sucks!!!!!!
However, I have found that when we are outside - we are continuously burning citronella etc etc etc even if it is during the day and just spray fly spray all around us - sensitive stuff of course.
I must add though, that my skin much prefers the muggy weather more so then the HOT dry weather - but unfortunately we do not have much of the muggy humid weather that some others have.
Also, before going to bed most nights, I lather my feet (when they are bad) with Novasone and then put on cotton socks - I do find that after a few hours my feet are hot, but by the time I take the socks off, they feel soothed!
Hope your skin starts to improve!
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Just reading all the posts!
As you know Ruth I have been on the cyclosporin now for about 2 - 3 months.
Anyway, all has been going along fine, however, I have put on over 5kg - for me a size 10-12 normally - this is very very upsetting! But also, my skin is starting to flare up again. I am thinking that maybe my Dr needs to increase my dose, but I am not sure how long I should be on the medication and then for him to increase it, does worry me a bit. All of my blood tests have been fine, so that isn't a problem, but I am curious - whether it would be worth changing to AZT - but I am not sure if it would be beneficial or not.
My specialist really does not want to put me back on cortisone as I have had way too much of it in my life, with my asthma and skin and he is very hesitant to go there, however, when I was on it, it did clear up very well, but usually came back about the same and to top it off, towards the end of it all, my body was starting to get used to the drug.
It is always a win lose situation with me and most of you all anyway, but sometimes, it does get you down.
Ruth - have you been able to purchase the E45 in Australia?
It must have been disappointing for your daughter to finish on the AZT - how is her sleeping going now she is off it?
Since i Have been on the cyclosporin my sleeping patterns have changed dramatically, and dont get much of it and walk around like a zombie at work, but I have just found a natural spray - Sleep relief - you spray under your tongue up to 4 times a night if waking - it isn't too bad, but it is better then taking the antihistimeine etc and sleeping tablets.
As we all read each other's stories we all do tend to learn more, so keep up the posts everyone - and lets hope that one day there will be a cure!
Hope everyone does start to improve!
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Hi Scratchy - we are now off the AZT - but yes the eczema has definitely come back - severely in several places and itchy again over all. I noticed there was a lag period of a couple of months where it seemed to be holding off - but now its come back again. I think this probably has to do with the fact that this med takes time to make the changes - and when it does - those changes also take time to leave the body before things go back. We are just trying to manage with the topical steroids (have tried protopic and elidel - didn't do a thing for her - but works well with some others - horses for courses in all of this!) - but i somehow fear that we may have to go back down the road of oral stuff once again.
What you say about the mood swings with the prednisolone - you are definitely spot on with that - we have noticed that too with her - it is an effect of the medication to do this - we would get some pretty weird mood swings from her - and because it affects your body's blood sugar levels - it is bound to cause problems in this area. At least you have the common sense to recognise this and take neccesary steps to deal with it. Chuck PMT in there as well for you - and boy oh boy - watch out!
I also know what you mean about the guinea pig effect - and unfortuantely - it is a fact of life as far as these things go. It is a very individualised response -so what works for one - may/may not work for the other. I think we tend to think that modern day medicine is a precise science in all areas - it isn't...and i'm sure that a lot of medico's don't like that fact either!. One size doens't fit all - and not every medicine works the same way with every person
Sit back , take a good look at what you have done with your treatment...where it has taken you, how effective it has been etc etc and cosnider the AVAILABLE alternatives. WE would all wish for there to be a natural, free from side effects thing or medicine to take - but the harsh reality is that there is no cure for eczema and sometimes you need to go in with all guns blazing to get your life back on track. Like I have said before - I have gone through so much guilt and pain over deciding to do this - but it has been worth it - and yes - if push comes to shove then I will probably do it again. Unfortunately - no doc can accurately predict how you will respond to these meds - so a lot of the journey felt like we were walking in the dark - which was not reassuring at all!. It may need for you to trial these yourself for some months to give them a good go, and play with dosages to get something effective for you if your eczema is severe enough. There were only 3 kids at the hospital where my daughter goes to who had been put on AZT for their eczema around the same time - and it was reassuring to hear that all of them had shown some improvement - even if it be short term to the drug. Most of the research has been done on adults. Try and think about the benefits you will be getting from this - after all - this is the reason why you are taking these in the first place - not for its side effects.... I'm not trying to sway you either way - it is your decision and your decision alone - I guess what I am trying to say is that you focus on getting something working for you so you can go out and live/enjoy your life.
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Thanks again Ruth for all your info. You make me look back and appreciate what my Mum must have gone through. When i come off oral corts i tend to get very short tempered. Have learned to time away from PMS time, or everyone cops it. (Also makes me appreciate my current family - hubby and kids). I'm still not sure about Imuran. Has the eczema or asthma returned since coming off it? Or have you now levelled out the dose? I feel like a guinea pig - mind you, an intelligent one who gets to take part in the decisions. Hope you're having a good day.
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augustsage (what an intriguing name!) - prednisolone (prednisone) works incredibly well to bring the eczema down to a managemable level within a few days-week. we had our first experience with this when our girl was firstly diagnosed with asthma - and found that not only did it help to clear up the asthma - but aas a side issue at the time we also saw it clearing up the skin. However !!!.... don't be lulled into a false sense of security with prednisolone - it certainly works very well and quickly to reduce inflammation and hypersensitivity - but your eczema without a doubt will come back - and probably come back with a vengence as the body tries to re-establish its hormonal processes. I thought prednisolone was the most fantastic drug in the world - and yes it can be a life saving medication for sure - but the rebound eczema that followed after stopping it caught us by surprise the first time we experienced it ( i wish someone had told me about this!). If you are in the process of coming off prednisolone - is to wean yourself from it slowly (unless you are on a 'short course' i.e. 3-5 days max - then there is conflicting evidence to suggest whether weaning is warranted here). if possible - really get stuck into your topical applications and try and get a good hold on the eczema - so that when/if the rebound comes then you have prepared ahead for it. its just unfortunate that the steroids have these other side effects - which is why these other drugs such as AZT, cyclosporine etc are now being seriously looked at and used as alternatives. Have you tried something like tacrolimus ointment (Protopic) on your skin. I have briefly seen the photos that you posted - and looks as if you have copped a nasty dose of it. It may well be that if you get it all over and is causing major problems - then perhaps you should have a look into these other medications as well. Essentially - you are really using oral immunosuppressants in any case - but these ones don't cause the other problems that long term use of steroids can. hope it helps
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It's been an eye-opener reading the past few posts. I thought I had it bad - eczema all over the body, including the face - but at least it's responding to oral prednisone. However, my face is responding much better than my torso, arms and legs. (Actually, the fact that the face is clearing up, with only scars left, is such a relief - if the rest of the body cleared up but the face was still bad I'd feel much worse.)
My question is about the prednisone: How long does the prednisone effect last before the eczema comes back? And is it common for the skin over most of the body to remain nodular and itchy while the face "magically" clears up?
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Hi Scratchy - yes our girl has already been on Imuran (Azathioprine/AZT)....was on this for approximately 6 or so months. Prior to that she was on a 3 month trial of cyclosporine - which didn't seem to help at all (may not have had the dose right...not sure). It was psychologically very traumatic for us to put her at such a young age on such a treatment - but like you - we had tried all the available treatments - but they really were like fighting an army with a feather. It was the constant pain, disability and total loss of quality of life that decided it for us to trial this. We were very disheartened after the cyclosporine didn't do anything for her (but as i said before there may have been reasons for this). After a break of a few months only after cyclosporine - we couldn't stand it any more - she was in excrutiating pain - she couldn't walk because of the skin damage from the eczema, couldn't hold her food for the same reason and bathing was a screaming nightmare. We really had no other choice other than to choose to continue down this path or try something else heavy duty.
For the first month after starting AZT - it looked as if nothing was happening - we had already had her on oral prednisolone and were slowly weaning her off this whilst trying to allow time for the AZT to get into her system and work. It isn't an overnight effect that you get from this medication. It takes time to make changes to the immune system in the body - so be prepared for this. We ended up playing around with the doses to try and get minimal amount of dose with effective clinical effect - and when we finally got to this - she ended up developing a condition called neutropenia - which is a below normal white blood cell count. This persisted for about 2 months with her and as a result it was decided that she should come off it.
In a nutshell - for us - would i recommend that this medication is worthwhile to try when other options have failed - DEFINITELY YES!!!!. When the AZT did get into her system and started to make changes - her entire skin structure changed to a point that apart from a few very stubborn areas of skin around her hands and ankles - the eczema was GONE. Because of this - I found that I now didn't need to use the armoury of other medications eg antihistamines, pain relievers, even a reduction in use of topical steroids that we had. She was sleeping so much better (and as a result so were we), she actually enjoyed getting back into her baths, she was actually living life rather than begging for it all to stop (which at age 4 then - was incredibly difficult and hearbreaking for us all to deal with).
No medication is without potential side effects or risk of harm. These class of medications are no different. The important thing here is that you balance the risks against the potential benefits that could be gained if you did go on this. Often you may only find out what these benefits are if you trial them in the first place. You will have to have routine blood tests to monitor your progress - before starting this medication - make sure you ask your doc to do a TMTT assay test - which measures the level of the enzyme that metabolises AZT. This test will give you a predictable indicator of whether you might end up getting some bone marrow suppression - like we did - but after stopping the AZT it immediately returned to within normal limits.
If in doubt or have any questions about this - ask ask ask.
It broke my heart to put our girl on this - but I can confidently come away knowing now that I made the right decision because it gave her back her quality of life that no other cream/medication could.
The only other side effect we had with AZT was slight nausea.
At least with these drugs they don't cause osteoporosis, diabetes etc like the steroids do.
Sorry its been a long post.......seems to becoming a habit!!!...but hope this helps. If you do need any other info........let me know....happy to help
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Thanks Ruth
I like the idea of tubigrip - will try soon. I read so much yesterday - is it your 5 year old who's going on Imuran? Has this happened yet? And how are you finding it?
At 42, I'm considering this, as I feel I've exhausted all other useable treatments, and need some relief.
I'm also going through assessment of the long-term effects of cortisone - just had a heap of blood tests and next week will have bone density test, then the verdict.
Again, thanks for replying to me - since finding this site yesterday, I feel there is a lifeline of understanding, and I thank each and every one of you for just being there.
Scratchy
PS: Does anyone else sail? We have a Sailability here - there motto is 'Freedom on the water regardless of ability', and I love it. The bonus is it takes two hands to sail the little dinghy, so I can't scratch while I sail. The drawback is I can only spend 45 - 60 minutes on the water at one time, so I take lots of shady breaks in between sails. Didn't stop me being National Champion in my division last year!
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Scratchy - we live in Aus and can definitely relate to this problem - really caused problems for us when we last went camping - flys everywhere - and difficult enough to get rid of from hanging around normal skin let alone broken skin!. We have a 5 yr old so fashion statements really weren't a problem here - we just used to put ankle length socks on her and let her wear sandals rather than thongs or shoes. We have found this to be the best for her as with the thongs the skin is still exposed and is still chafing along the inside of the toes (which the flys love) - plus wearing shoes and socks was just plain too hot for her skin - it didn't breathe - so we compromised this way. The socks also help to stop the sandals rubbing the skin whilst allowing it to breathe still.
If you have a look through the shops - could probably find some flesh-toned coloured cotton ankle length socks - which when worn with sandals - shouldn't be too obvious. Another alternative is getting some lengths of Tubigrip (which is flesh coloured) from the chemist and cutting it to length then slip that on before sandals/thongs.
We have tried just about every type of insect repellent on the market ourselves - and if you put this on your skin - it will more likely further irritate or sting the skin. Some of these including a well known brand that we took away with us on our last camping trip almost seemed to act as an insect attractant rather than repellant! - but i guess try them out for yourself and see how they go for you....just a couple of suggestions.....hope you get something that works!
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Hi all
To other Australian eczema sufferers: How do you manage the fly situation? Every time I go outside, I get harrassed by flies. My worst eczema is on my feet, so I usually wear thongs, as shoes and socks rub, but I sometimes have to wrap my feet with a shirt to keep the flies away from the open areas. Any ideas?
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Hi Clare X.
I used to have really bad eczema, its still a pain now, but i have it fairly under control. I have posted my story on here a long time ago and i dont want to bring back all the memories. Is the eczema around your eyes infected? When I had really bad eczema one of my worst areas was around my eyes and it became infected. I used to wake up and the skin around my eyes was weeping and it had rubbed off. I am only just recovering from the effect it had on my eyes. 2 years later and im still putting in eye drops twice a day for the pain in my eyes, even tho the eczema has gone. Anyway, I can't remember the name of the cream the doctors kept prescribing for my eyes, but it never worked, just made it worse. It was only when i went into hospital that a dermatologist prescribed Trimovate cream. I saw the difference the next day and within a week the eczema around my eys was virtually gone. I think it worked so well, because the skin aound my eyes was a fungal infection and trimovate is great for fungal infections. If the skin looks infected i recommend you take a look at trimovate. Try a little bit on a small part of the eczema just in case it makes it worse, but its worth a try.
Hope it gets better soon. Chris
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Hi, i just came across this site today and i've been reading for over an hour! I can relate to how so many of you are feeling i have always had dry skin but the eczema developed about 7 years ago and it's got worse over the years, the skin on my arms,legs and face are always red and pimply and no matter how much moisturiser i use it just doesnt seem to help. I also get eczema on my eyes and mouth and somedays i wake up and my lips are swollen and coverd in little blisters and the only thing that seems to work is hydrocortisone ointment, this past year i seem to have flare ups every week and i hate using the hydrocortisone so much, i already have some thread veins on my face caused by the ointment thining my skin, im only 21 and i feel like im living in an old persons skin. my eyes have a wrinkle appearance and only look worse if i try to wear eye shadow, I cant bear to go out with out make-up on but i cant wear much because i just looks worse, my eyes and lips are just a mess! I have never been a confident person and the eczema has completeley destroyed my confidence in how i look! There are days when i just don't want to get out of bed, i'll just cry and cry (which just ends up making me look 10 times worse) no one really understands how i feel except my mom she had it worse than me as a child but grew out of it! Even so she just tells me to get on with it and my poor boyfriend who does put up with a lot try's to understand but it just ends up causing a lot of arguments. I am not that close to my friends anymore because i have to make excuses when i dont feel i can go out, i hate going out with them when they look so perfect, they know a little about how i feel but i try to hide my feelings, they just tell me they cant see it or it doesnt look that bad but to me it does. Sometime's i just dread getting up in the mornings because i know i have to look in the mirror, if it wasnt for the fact i have to work there are days when i would just stay in bed! there are times when ive not gone to work because i cant bear to be seen. I do somtimes feel like ending it all! I to cover up in the summer but i long to be able to wear short skirts and tops like most girls and when ever i see other girls with normal skin i instantly feel worse about myself. i know theres people worse off than me and i feel so guilty for feeling this way but i cant help myself. Sorry to go on but it's really good to get across what im feeling. Please if anyone has any advice about what to use on the eyes and mouth i would be gratefull, also are there any good scar tratments.
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Vitamin D, Cholecalciferol. Here is my story of a successful treatment that I have had for seasonal eczema. I have had eczema for the past 10 year on my fingers during winter and fall months. I have tried lots of recommendations without success, moisturing frequently, drinking more water, borage oil etc. . I have finally found something that helped me: Vitamin D cholecalciferol. They synthetic form, Ergocalciferol, did not seem to work. It seems logical that I might be vitamin D deficient during the winter and fall as my skin is covered and I do not normally ingest any vitamin d from my diet. Vitamin D isinexpensive ($4 for a bottle 100 tablets) and I have not had an outbreak since I started taking it (two months now). I take between 800 and 1200 iu per day with calcium and magnesium. If your eczema symptoms are similar to mine, give it a try for a couple of weeks
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Hi all,
I've been looking for a forum like this for a while. Tried the alt.support.skin-diseases newsgroup but that's very quiet. Will, you've probably had heaps of advice on medicating, so I can't help you there. What I can say is this: Eczema does not define you. If you let it define you, it will have won the war.
So what if your body betrays you? Mine has. Everybody here understands what I'm talking about, I think. (I mean, I hope.) You have to use this opportunity to show it - and everybody - that you're better than that, that you refuse to capitulate. Eczema does not make you weaker than normal people; it gives you a chance to show them you are stronger.
Think of Cyrano de Bergerac and that ridiculously long nose of his. When people insulted his nose, he gave it right back to them, tenfold.
Just remember that we're here to support you too.
I've recently had the big E return after a long hiatus, and the worst thing about it is the effect on your self-esteem. You know as well as I do, E makes life pretty grim and it's hard to keep your chin up - especially when it's sprinkled with a godawful rash
But you've just got to keep on trying.
Find good friends. I mean, REALLY good friends. Cut your fairweather friends loose. But don't talk about eczema all the time, or they'll start to think that's all you are.
Hey, listen to me, acting like I'm Mr Know-It-All... I don't mean to patronise, and you might have guessed that I'm mostly speaking to myself - I'm not bursting with self-confidence myself just yet, but I've started a blog and posted my photos on the web so that my family (which is spread out over three cities and two countries) can see for themselves the state of the skin. You can check out the pics at www.augustsage.tripod.com and the blog at www.augustsage.blogspot.com.
(I have to warn you, however, that the blog also contains political and other material that you might disagree with. That's great; drop me a comment taking issue with what I write. After all, we are more than eczema sufferers, no matter how much the big E wants to dominate our heads.)
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Hi Will - I'm in Aust and haven't heard anything about this product. I'm just wondering if it is something along the lines of zinc cream - like in nappy rash cream???. zinc is meant to be helpful for skin repair - and sometimes a barrier cream such as a nappy rash cream can be quite soothing on really dry or irritated areas. i often used to apply a good quality nappy rash cream after bathing my girl to these sort of areas (often ended up being a head to toe job on many occassions!) - but also one of my favourites is good old lanolin - it sticks to the skin really well and helps to soften it as well.
Will i think you really have to match the treatment with the severity of the eczema - not just in terms of how it appears - but also in terms of what you are able to manage. i can clearly relate to what Scabbyget is saying about the depression side of things - it has a huge impact on your whole life (and those around you as well)- and it is so important to adopt a holistic approach to this. We do not live our lives according to a medical textbook - there is enormous variety in how this affects peoples lives and how they deal with it. This message board really demonstrates this - but there are also central common issues that are faced by nearly everyone here. Express your concerns to your doc about how you are feeling and yes unfortunately it can be a long road so patience really is a necessary virtue here. The important thing here is that you seek out and get the help that YOU need - do whatever it takes for YOU to deal with this. Even if you just want to get some frustration off your chest - this is a good place to do it. all the best
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Thank you Scabbyget and Ruth. I appreciate you taking the time to give some advice. I have a question for you, right now in my area radio stations are advertising this skin zinc. They are calling it miracleous!
Anyone try this stuff, the spray, cream, shampoo?
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I come from Malaysia, a hot and humid country...a big no-no to my eczematic skin.
My skin was ok when I studied in the UK. IT was comparatively ok as well when I went to the US for a short business trip. Seems like a cold and not so humid environment is much better for my skin, unlike most of you who's written in ;-)
One thing I know that aggravates my eczema is stress.
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Was in the midst of finding some info on atopic gene and i landed up here.
I just found out that my hubby is suffering from eczema and the doctor explained how this may be passed down to our offsprings
Do any kind souls here have any site/book to recommend for reading, I just wanna find out more about it and how to make it a better environment/condition for him
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I don't write much on here but after reading what Will and Ruth wrote thought I'd stick my oar in too. Will - I second everything Ruth said. I've had the dreaded "E" all my life and coped reasonably well until my early forties when I was hospitalised for two weeks when my skin went dreadfully red (Erythroderma I think) and I looked like someone had given me a good going over with a cheese grater, skin was breaking and weeping and I could hardly walk. Along with this comes the depression too, of course. Thankfully my GP got me into hospital 3 hours after seeing me (yes, on the NHS!) and after some superb nursing care I was allowed out and the road to recovery started. I was on azathioprine for two years and had monthly blood tests for liver function and really the only thing you have to do is do your treatments (bathing & emollients)and not drink too much alcohol. Was on steroids too for a short time to kick start the recovery but weaned off after 6 months. For scalp, the nurses gave me a coal tar pomade which was messy and meant you had to wear a hat in bed but was much more effective than any of the steroidy stuff. Like Ruth says, get yourself referred to a dermatologist for decent treatment & advice. It's a long road and you need patience but there are answers for everyone that don't involve major use of drugs. Good luck!
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Hi Will - there are other alternative treatments you can try - you could try proptopic (tacrolimus) ointment or else you could consider an oral type of immunosuppressant (which isn't a steroid but does cause immunosuppression and therefore helps to alleviate the eczema) - which are things like azathioprine (Imuran), cylosporin (Neoral) and possibly someothers - but azathioprine and cyclosporine are the most commonly used treatments for severe intractable eczema. Ideally it would be best to try and deal with your eczema topically - and that may involve having to to modify the potency of the steroid cream you are using now and then slowly weaning off of it rather than using these - but there again if all else fails then sometimes you really dont have much option other than to give these a go if it is seriously impacting on your life. both these treatments are oral - and it would mean having to have regular blood screening - but whilst they can have serious side effects (which the monitoring should cover for at least in the short term) it has given life back to many people as well (we know this for a fact ourselves) because all else did fail. speak to your doc about this - and probably would be a good idea to get a referral onto a decent immunologist/dermatologist who works/specialises in this area. injectable and oral steroids can cause skin thinning, osteporosis, reduced immunity and wound healing, diabetes etc - this is what your doc was talking about. get in and speak to someone who has a good working knowledge of what currently available treatments there are and that way you can then make a decision as to which way you want to go. all the best,
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Hello all. Well here's my story. I suffered from eczema from birth. As a young child my mother put socks on my hands to prevent scratching. My only affected areas were the inside of my arms where the arm actually bends. As a teenager I was basically freed from it. It was until I was older that it suddenly came back with a "vengance". All of a sudden, I have it all over my body. Initially dermatologist would give me a cortisone shot that would give me skin of steel for almost a month! It was great! I could shower without my skin burning, I could do anything. I was told you could only have it twice a year. Well now that same shot, only lasts about a week. My doctor doesn't want to give me it anymore because of what he says it could do to your "insides". My legs are so bad, I don't wear shorts, can't even go swimming with my 8yr old. I scratch until bleeding or pull scabs off all the time. Cremes aren't working that great anymore. My scalp now has the same issues. I probably brush out a pound of skin off my head every morning. I'm african american so I have to keep a moisture balance in my hair/scalp but everything I put on my skin irritates it because it's so sensitive. I'm so frustrated and confused. My doctor has me doing light treatments, and that helps somewhat because it darkens my skin which prevents others from seeing the redness associated with eczema. I just don't understand why this disease only was on my arms at one time and now is all over.
I know the nurse at my dermatologist, and I beg her to give me another cortisone shot as often as possible. If this shot can kill me, I'd rather die that way then to live like this.
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I am in late 50s and I appear to have started with eczema or dermatitis in February this year. It began be looking like shingles on back but higher and more widespread than a shingle attack. Then it spread to buttocks, legs and arms. Red, itchy, lumpy skin was driving me mad. GP prescribed various things including amoxillin for infected area on back, 6 weeks later I was in hospital with severe jaundice as a uncommon reaction to the drug. In meantime had gone privately to dermotogist who prescribed steroids. Came off those whilst in hospital - they helped a little. Out of hospital and at home resting whilst liver recovering, found skin cleared a little. I was given Questran to clear bile from liver and reduce the itching caused by jaundice - this mean for while had double itching but the drung reduced this. But then when no longer needed Questran as liver function nearly normal, the skin started back again in July - back not as bad as before but still extensive. Could only have part of patch tests as back affected. One reaction was to hair dye and so dermotololist (now seeing at nhs hospital) feels that other dyes may be problem so told me to wear white or light colours and not to wear black, navy or purple in particular certainly nothing dark.Only to wear pure cotton, silk or wool (dont like wool against skin). Also changed washing powder to Acdo or using a "wah it ball" from Lakeland (no powder at all). Have tried various creams etc - found Aques cream no longer helps, tried Doublebase - now trying Aveeno and that gives some relief for while. Dermotologist gave me Betnvate RD and injextion of Kennalog. This injection was supposed to stop itching but so far made it worse - have others had that problem? It is the itching which gets me down when I cannot sleep. Piriton helped for while but does not seem to have any affect now.
I find this site really interesting to realise others have problems and how they have resolved them or not!
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Thanks for the reply Sams Mommy, I thought so because I've noticed my skin improve in a simialar situation. Im in Australia and during Winter humidity drops and my skin goes bad but in the summer its great ^__^
Looks like we should all go to Dubai ^__^
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help, my 6mnth old daughter has eczma, i'm finding it really hard to keep her skin moist and she is Always scratching it breaks my heart. any hints???
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Hi, I don't log into this site very often now, however just read the note about 'has anyone been to humid climates and their skin improved'?. I am a Mommy to a son Sam who is now 4 (he is mentioned a number of times on other parts of this website). Since he was 5 months old we have visited Dubai at least once a year. His skin is fantastic every time we visit, within 48 hours of arriving in Dubai there is a dramatic improvement. He takes no medication whilst we are there and we do not use any cream at all in Dubai. However, within 6 hours of returning to the UK he starts scratching again!! We would love to move out there but it's not that easy as my Husband has a business in the UK...now my son is 4 he understands better about his skin and last night asked me if we could live in Dubai as his poorly skin is better in Dubai and he feels better out there!! When we visit the temperatures are normally around 100 degrees with 60 degrees humidity.
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Just wondering, their seems to be a lot of people suffering from eczema in england. Has anyone ever gone on holidays to a more humid climate like a tropical place and found their skin has improved?
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HI everyone,
I know what you r all going thru. It does make you cry cause it is sooo fustrating at times and you begin to get angry with everyone around you. About a month ago I went to an allery specialist/ homeopath in North London called Fiona Gross.
I read an article in one of the London newspapers about a journalist who had suffered really bad hayfever and he tried her and then wrote the article.
since then my skin has improved. She tested me for a number of allergens (enviromenal and food) and gave me solutions to desensitise my body. This is the first time in my whole life whilst living in England (34yrs) that my skin has gotten much better without the use of steroid creams. I decided from last yr, not to use them anymore. I use allergenics it itched really badly at first so i stopped using it for a bit and went back to it now its fine for my hands and feet but seems to irritate my legs, so when they feel itchy ( which is every day) i use a bit of calamine lotion and a little vaseline which calms them down. I am looking forward to my hols on the West coast of Africa, where my eczema disappears completely any time I go over
Hope my message will help
dont give up hope
luv
C
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I need help if i have eczema or Rosacea?I am just now having redness,itchy patches on my face.Specially when i move around alot,get warm.my face gets red.sometimes while at work my co-workers notice,think i've been under the sun.gettin sick of it.hate it.anyways been to the doctor,he just gave me some cream(hydrocortisone 1%)i dont think its helping.still have it.getting tired of it.whatever it is??,how to treat it???.PLEASE HELP ME
.. I have sensitive,oily skin.I'm 32. U.S
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Hi Davinder
I'm glad you saw my message, I was worried that because the site has become so big you wouldn't see it!!
Cogratulations on your second son, Jeevan, that's great news!
As I said in my last message, I'll try and visit the site more often. Although I do still have my bad moments with my eczema, I try to be a lot more positive these days!
I'll look at the case study details on the front page and seriously think about helping out but I still hide a lot from my parents (I know it's silly) so it may be difficult.
All the best to you and your family.
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