By lesley on Wednesday, September 03, 2008 - 03:04 pm:

I have eczema on my hair line and on my eyebrows
and around my eyes
the doctor put me on Elidel pimecrolimus cream
can someone please tell me. is it safe to put in your hair
or will it thin it
lesley

By nubianchild on Friday, February 08, 2008 - 07:45 pm:

My 9 year old son was born with ecema, and we have done the rounds of prescribbed medications all steriod with not improvement, so I did some investigation of my own; and ended up requesting Elidel.

The ecema is now managable.
Clipped nails
Fulcidine cream
Elidel

We also use Shea Butter

By rainrowan on Sunday, November 18, 2007 - 02:56 am:

My child was prescribed Elidel at 4 months for severe eczema on his knees. At 6 months he was hospitalized for a viral infection starting in his leg. Is there a link? I do not know for sure but we stopped using it right away. As far as I know, Elidel has been discontinued in the States.

By Iem on Sunday, September 16, 2007 - 11:08 am:

I've had eczema all my life and because I didn't know that steroid creams was thinning out my skin over time, I used to use it like a moisturiser and now the places which used to be the most problematic, the skin is really thin, on the legs and face. When it's cold, my face shows redness and my lips turn purplish. I've just read up on the net that shea butter is good to help with thinning skin? Where else can I get more info about this?

By natalie on Saturday, August 18, 2007 - 10:19 pm:

hi i am 35 and i have had eczema all of my life and now for 4 days i have beeb useing elidel cream on my hands and its working so far cleared one hand up already.it does cost alot of money 63 pounds for 60 grams but if it helps it ok cant stay on it long the doctor said 4 weeks thats all then have a break from it. i no its a new product only been out four years old better then seriods i think my skin is so thin from seriods.

By tj mac on Thursday, May 12, 2005 - 04:20 pm:

it mess me up

By Mayra on Wednesday, April 13, 2005 - 07:43 pm:

For any one that would like to find out were they can buy the Shea butter cream. I personal go to this place in Carson CA their website is
www.skin essence.net

Address: 940 E. Dominguez St.

Carson CA 90746

310-354-7935



they specialize in skin care and its all natural products. I feel confidant to recommend them. They really helped my little girl. If you would like more info its OK to email me

I would love to help specially when it involves kids. Also the power of prayer works, it doesn't hurt to try even if you don’t believe. Have faith, are Lord can part seas and move mountains so he can heal your little babies but you have to ask.

Take care and God bless.

By nj on Monday, April 11, 2005 - 05:27 pm:

fdxdf

By ruth on Friday, April 01, 2005 - 12:03 pm:

mayra - the home page of Eczema Voice carries a link about the cancer warning concerning Elidel and Protopic. Also can check out the American web site www.nationaleczema.org (National Eczema Association for Science and Education, NEASE)- they explain what available info they have and RELEVANT warnings about the use of these medications. A VERY GOOD website for eczema info/help - our consultant here in Australia recommended it to us to check out for additional info. See if that is of help - if not - can access the FDA website - (who were the ones who actually issued this warning) - they have some details about their warning there. Hope it helps

By mayra on Friday, April 01, 2005 - 07:53 am:

About the Elidel again to anyone. My daughter is one year old and I heard that elidel causes cancer. I tried looking it up on the web and was not successful and someone please educate me for my baby doughter's sake.

also she has bad dandraff

By mayra on Friday, April 01, 2005 - 07:35 am:

for the person that put desperate for help

HI my name is Mayra an i have a daughter of one years old that has eczema. she broke out really bad on her face and arms and legs that when she would move it would bleed. I almost tried everything. she was using elidel for about 4 months until I heard that it my cause cancer
for a friend refereed me to a place called skin essence in Compton California. i took her there and they out Shea butter on her and steamed her for 10 min and in three days it was gone. of course eczema has no cure but i can say that when my daughters eczema act up that really helps.

just look up the Shea butter cream and see if it will help your grandfather you never know
hopefully it helps and God Bless.

P.S what have you heard so fare about the Elidel cream

By kim on Saturday, March 26, 2005 - 05:51 pm:

Spanishgirl- as long as you are making your decisions with full information, you are doing the best you can for yourself. There is a difference between 'a risk' of cancer and an absolute. I am glad you found something that works for you. It's all about quality of life.

By Spanishgirl on Tuesday, March 22, 2005 - 06:54 pm:

Hi Kit, when I saw the link of cancer scare with Protopic, I was worried for a while. Then I thought if its worth to put it on. After some mintutes I made my mind up and got the conclusion that I prefered to take the risk and not have a misarable life with my ezcema. So If I have to live just 20 more years I prefer live just that short with a considerable quality of life than not 60 more years with a crap life. I guess it depends on how bad is your ezcema anyway.
Thanks and sorry for my English.

By kim on Wednesday, March 16, 2005 - 12:00 am:

Something to keep in mind about the elidel- cancer link...
Eczema is an autoimmune disorder just as cancer is as well. Both could have some random trigger (for instance, my husband is in a high stress industry and we have known a handful of men in their 30-late 40s who have passed away from cancer in his industry and in 2 areas of California alone). I notice a lot of people who have one autoimmune problem have or eventually have another, whether it is allergies, hayfever, keratosis pilaris, alopecia, etc. There is a natural, and what I believe is higher than norm, level of stress in the lives of eczema sufferers (between the societal woes, emotional and physical pains).
Would I put elidel on my son if he had eczema? No. I probably would not want to put it on myself. Before deciding to use it or not (long term), think about your quality of life. I personally, have dealt with my eczema in a manner where it is not worth the risk to try elidel although it has been suggested to me by my derm.
I cannot emphasize how much stress affects the body, esp. ones like ours. Please take care of yourself physically, emotionally, spiritually and mentally.

By jon on Tuesday, March 15, 2005 - 06:32 pm:

There has come a report out now that elidel could cause cancer in children..my 3 year old has been using it but i'm not going to give it to him no more......

By desperate for help on Friday, February 04, 2005 - 04:12 am:

My grandfather has a severe case of eczema on his entire body with the exception of hands and face. He has tried Elidel and numerous other medications and none seem to be working. His doctor says it is one of the worst cases he has ever seen. Does anyone know of something that could possibly help him? Also, tell me more about Protopic cream. Does it work on severe cases? Thanks..

By jane on Thursday, January 13, 2005 - 07:34 am:

Thats what we done was take photos throught out as was always at a better stage when we saw the hospital. I always went with things wrote down what I wanted to ask so that when i got in there my head didn't go blank. As I would always get out and remember something i hadn't ask! Good luck

By Vic on Wednesday, January 12, 2005 - 08:05 pm:

Thanks Ruth, what a good idea. Sometimes I consider leaving off the creams and letting him scratch for a week before appointments, and THEN taking him along to the doctors - but of course, I would never do that to him. Doctors can be fantastic when they work in partnership with you. My GP is particularly helpful because she treats us as equals. The Dermatologist was hopelessly condescending and useless - spent more time talking than listening, which is always a sign of arrogance. So she didn't learn anything about F's eczema. Didn't stop her forming an opinion though. GRRRRRR I'm getting cross just thinking about it. Find a happy place.........

By ruth on Wednesday, January 12, 2005 - 09:59 am:

Vic - keep the angry face on - you can get pushed around from pillar to post with all of this sometimes rather than getting sense out of the people who should be offering it.
What I could recommend (which has immensely helped us in the past) - is to take photos and keep a journal of whats going on with your child's skin/sleeping/irritability/pain levels etc. If you haven't got a camera - then borrow one from a friend - and take photos when its in its worst state - because as murphy's law would have it - you will always be at the docs when your child is looking at their best!!!. I wish i had a dollar for everytime i have had that condescending look from docs ......hmmm makes me angry just thinking about it.
So what you can do is create a portfolio on your child.....i know that this might sound a bit bizarre or weird - BUT if you keep the records and are able to show them to people involved in his/her care then it makes it harder to be dismissed. Also - it makes it easier for you to refer back to when all those sleepless nights/years all seem to just gel into one hazy revolting mess. Taking pictures also helps to show how effective/ineffective treatments being used have been and as the old saying goes - a picture tells a thousand words!. It can also help win some of your battles with these people.
just an idea.......

By Vic on Tuesday, January 11, 2005 - 08:36 pm:

Hi Ruth, We had our GP appointment this morning and she was loathe to prescribe Elidel without a Specialist. However, she agreed to write to the Dermatologist for advice rather than re-refer us which is a relief. We had a very poor service from our Dermatologist. They saw F. on a good day and his skin looked quite clear. We told them we had been using steroids daily for months and that we moisturised 6 times a day. Instead of saying "Well done for all your hard work, here's how to reduce the steroid use", they basically implied that my son had very mild eczema and we were making a fuss about nothing - very disheartening and insulting. Luckily our GP has seen his eczema at its worst and is very supportive of us and him. So hopefully we can move on to Elidel at some point in the next couple of weeks - unless we have to see a specialist, in which case I'm wearing my angry face and not taking any crap from them. Thanks again for the info you gave me.

By ruth on Saturday, January 08, 2005 - 07:51 am:

Vic that's a really sensible approach to have - its always the best to trial the least one first to give yourself an idea of what's happening - you can always scale it up later if need to. I don't see why your doc shouldn't prescribe it for you - if you find yourself banging your head against a brick wall on it - then just get a referral to a dermatologist. Could also ask your doc to see if they might have any sample tubes of Elidel - you never know what they keep in their draws - ....medical ones that is!

By Vic on Thursday, January 06, 2005 - 07:24 pm:

Thanks Ruth, that's really helpful info. I will ask the Dr for Elidel I think in the first instance and see a) whether she'll agree! and b) whether it holds things. I'm always a believer in using the least powerful things first then building up. We recently kept note of the steroid use and basically there isn't a day when we don't use them somewhere and 12 days out of 14 they're going on his feet. I'm ok with that but if there's something out there without the risks of thinning skin then I'd like to give it a try. Thanks again.

By ruth on Thursday, January 06, 2005 - 12:25 pm:

Vic - I can help you out here - yes Elidel should be fine for a 13 month old child - can be started at the same time as the steroids - so no probs in that dept. As far as the difference between Elidel and Protopic - Elidel's ingredient is pimecrolimus and Protopic's is tacrolimus - they are in the same family of medications. Elidel is indicated for maintenance and preventative type therapy plus is indicated for use in mild - moderate eczema. Elidel comes in a cream formulation. Protopic comes in an ointment form - is more potent i.e. has stronger effect than Elidel and therefore is indicated for eczema which is moderate - severe and for flareups. Protopic also comes in 2 different strengths - 0.03% (for children) and 0.1% (for adults) - but again the adult strength can be used in young children under doc's advice (we did and our girl was only 3 yrs). Protopic tends to give a burning/stinging sensation on application - depends on individual (some might not even experience it).
It is suggested that these two medications will take over from the steroids as they become more commonly used (and cheaper to get/manufacture)- their side effects profile doesn't appear to be as adverse as the steroids - just make sure to apply sunscreen when going out in sun (like we all should any how).
Basically - if the eczema isn't too bad/severe - then elidel might do it for you - if not then might try protopic. Often dont know how good you will respond until trying them.
Hope it helps Vic - allthe best

By Vic on Wednesday, January 05, 2005 - 09:32 pm:

Elidel for 13 month old baby? Can anyone advise me as I have an appointment with my GP next week. I am sick of the amount of steroids I am using on his skin, especially his neck. Does anyone know of children under the age of 2 using Elidel? I know, for example that Vallergan is only strictly for over 2 years old, but F's been taking that since he was four months. If anyone else uses it for under 2's I will feel confident in insisting we give it a try. Incidentally - what's the diff. between Elidel and Protopic?

Thanks guys, Vic

By Hayley on Saturday, November 27, 2004 - 01:05 pm:

Hi, I've just got my first tube of Elidel and I applied it about 10 mins ago, slightly tingly but it's not as bad as my hydrocortisone! :P

I'm stunned, the redness is going as I type this, I can't believe it! :D

Anyways, I've been asked to monitor my progres by my GP, as none of the doctors have ever heard of it and wat me to try it out. I feel good to be doing something to help, even if it is being a guinea pig! ^_~

I'll post my progress as and when needed. ^_^
PS- Feel free to email me at tedizuk-at-aol.com (I don't want to get spam, so just replace -at- with @

By Chuck on Wednesday, November 10, 2004 - 12:07 am:

Who is the girl on the Elidel commercial, I think she's hot!

By Emily on Wednesday, November 03, 2004 - 06:24 pm:

I was recently diagnosed with Eczema, and prescribed Elidel. It definitely works! I saw results after only a few days. Also, my doctor told me to buy Cetaphil's Gentle Skin Cleanser. I think this really helps as well. I was thinking it may help if you get dry skin overnight, because you can leave some on your skin and it acts as an emollient. You don't have to use water to rinse it off. It may be better for your skin than vaseline.

By Linds on Friday, October 29, 2004 - 01:33 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 paul on Friday, September 24, 2004 - 12:52 am:

Hello can anyone tell me if Elidel cream is available in the United Kingdom??? please email me ..paul at holdenon2buba@yahoo.com thankyou..

By Dan on Thursday, September 23, 2004 - 03:27 pm:

Does anyone know if you can become resistant to Elidel? I've used Elidel for 8 months with terrific results but recently it seems like it's not working as effective as it used to. Does anyone have any info about this?

By kim on Tuesday, May 18, 2004 - 06:45 am:

puckers- have you had a biopsy on it? if your doctors are just looking at it and telling you they don't know and ending it at that, you need to find other doctors.
good luck.

By puckers on Tuesday, May 18, 2004 - 04:34 am:

hi can someone help me out.ive had eczema since i was a baby and over the years i have been able to keep track of it and keep it down..but in tha past 4 years it has gone to my face and not all over just around my mouth like on tha skin area around it from tha end of my lips to the begining of my nose and some days its really red and some days its not and sometimes it gets really itchy and it burns somtimes when i put chapstick on it to stop the itching but i dont really know what it is i have been to many doctors and they have no idea what is it.if u have ne info to help me out please e-mail me apple_puckers_lover@hotmail.com please please please help me out

By ruth on Monday, April 26, 2004 - 01:31 pm:

PD your doctor should be able to advise you on this - but because elidel does not have the same skin thinning effects as the steroids, and is designed for mild-moderate eczema - its use appears relatively unlimited in that dermatologists are recommending that at the first sign of a flare up or for maintenance use where the eczema is chronic - it is now becoming widely accepted as the preferred drug of choice to use due to its high safety profile. Like all topical steroids and immunomodulatory creams such as elidel and protopic - there is an element of local immunosuppression (which is why they work) so it is important to apply sunscreen when going outside (which is what is generally recommended for everyone as a sageguard against skin cancer). The info that is coming out about these drugs to date is that you can be more relaxed about their use because there are very few side effects as compared with some of the steroids - but if unsure - check back with your doc or pharmacist.

By PD on Monday, April 26, 2004 - 04:01 am:

when should you stop using elidel. I've been using for 6 months , when I miss a day I will break out. Is this something that can be used forever?

By ruth on Sunday, April 18, 2004 - 03:24 pm:

hi lizabeth - well at least there is some improvemnt and thats great! its just a running battle isn't it?!
look - i have never used aqueous cream before - but as far as a lot of the articles i have read on it say is that it is one of the old style creams that every doc used to prescribe as an emollient/soap substitue - but further studies hve shown that it can be extremely irritating to skin if left on - so it has certainly lost favour as a moisturiser as there are much more kinder moisturisers on the market now.
i wouldn't go substituing aqueous cream with vaseline or elidel - they are quite different products and have differnt functions. if you have something that workks for you - like the elidel - use it as you need to and use the vaseline as a barrier cream when needed e.g. at night is a good idea as gives time to absorb and may perhaps pay to use it regularly during the day if it helps to ease it.

as far as saving the nhs goes!!!- you will find that if you can get an effective treatment working for you know and by sticking to it - you will save yourslef and the nhs lots of money because you won't be spending it on other treatments /doctors - plus the cost of elidel and protopic will come down in time as it is prredicted to even take over the current steroid treatment management. cheers

By lizabeth on Saturday, April 17, 2004 - 10:43 pm:

I have been taking the lymecycline/tetralysal and using elidel cream now for a few weeks and my skin has never been better. For the first time in a year and a half the redness has almost gone around my mouth.

The only time my skin gets bad now is if I eat chocolate, which always gives me spots etc, and I am starting to think that nuts do the sames as now I have stoped eating them I don't have that problem either.

So I am happy now. Although I now have several new patches on my chest, but haven't been using cream on this until I see the dermatologist. (Looks like I am going to have to resign myself to the fact I am always going to have such problems)

Been using alphosyl for what seems to be psoriasis around the hair line of my forehead, but it doesn't seem to go away completely.

Thank you Ruth for your advice.

Actually I notice that when I wake up in the morning and yawn my skin feels really tight and stretches feeling like it is cracking - which it must be as if I yawn whilst looking in the mirror I can clearly see that before my skin looks okay, but after it is bright red all around the the area around my mouth (excluding around lips, but rather reaching from the corner of my nostril to the side of my mouth) My boyfriend says my uni room gets quite dry and I leave a bowel of water on the heater, but this doesn't seem to do much.

So, perhaps a simple bit of vaselene before I got to bed, or before I yawn (if I can delay it!!) would be just as good as elidel cream and less expensive for our NHS, which I value and appreciate so much and has always served me well.

Not sure what vaseline is like, but I have lots of aqauous cream (which is the only cleanser my face can take).

Would aquaous cream be a substitute for vaseline do you think/does anyone think?

Thanks.

By ruth on Saturday, April 03, 2004 - 01:49 pm:

hi lizabeth - i know that this might sound a bit lame considering everything you have tried to help control this dermatitis but i was wondering if perhaps adding to the multitude of things i know that you already have going on that poor skin of yours you also try applying plain old vaseline around the affected areas several times per day - particularly before eating/drinking. the reason why i say this is that a friend's child who is 6 suffers from very nasty perioral dermatitis as well- and this seemed to help him in that it offered a barrier to the skin and relieved some of the dryness and irritation. i know it is not a cure all - but because the mouth is an area of the body that is constatntly being subjected to injury & irritation -plus is a warm moist environment which fungal bugs just love to grow in - a barrier type cream might help here in preventing the skin coming into contact with some of these. Plus the fact that you are going through some stressful situations - these will actually reduce your body's immune response to infection - which can give the green light to the growth of bugs such as oral thrush which are normally kept in check when you are well. this is why they are called opportunistic infections.
by the way - this friend's child has also tried using nappyrash cream around his mouth when he is home e.g. at night and he says that it makes his mouth feel better. it might not work or be helpful for you - but it might be worth a try? - all the best

By Lizabeth on Saturday, April 03, 2004 - 12:13 pm:

I have Perioral Dematitis (on my face, corners of mouth, around chin below and around sides of nose) and also some Eczema patches (around chin and sides of nose) and I might get or may already have Psoriasis, as my dad has it. (I get Psoriasis in my eyebrow or on forehead which might be dermatitis aswell)

It all started with red circles getting bigger at the corner of my mouth, (which before I would only occasionally get if I was run down, hadn't been eating properly and especially after eating pringle crisps which may have scratched the corner of my mouth - but it would always clear up once I started eating properly again.)

Then in Oct 2002 I ate some of these crisps and got the redness at the corner of my mouth but it has not gone away since. I still have it after 1.5 years!!!!

I first used Daktarin - as it could have been fungal and I also had a fungal patch in between breasts. It worked on my chest, but didn't really work on the corners of my mouth.

I then used hydrocortisone cream, and used it at the sides of my nose and chin. It worked at first but when I stopped it came back worse and the redness extended around my chin and has continued to be worse since then!!

I went to the south of France and saw a bit of sun and my skin was so much better - although the redness at the corner of my mouth persisted albeit less severely and a patch between breast reappeared.

When I got back to cloudy England UK and stressful meeting essay writing deadlines for University, skin on my face got bad again.

Went to see a specialist dermatologist instead of GP and tried Trimovate cream (stronger). This was really good at first - but again when I stopped it got worse.

The patch on my chest completely disappeared though! It hasn't come back since. (Don't know why that is)

My skin on my face started to get itchy and even bleed, which is the worst it had ever been, I saw Dermatologist again and took lots of anitbioitcs for a month. (Oxytetracycline and and another I can't remember) I took 6 per day which made me feel tired but skin got better. However, it still did not erradicate the redness around the corner of my mouth and around my chin. (This is just redness in colour, no itchyness or bumps, but unsightly anyway)

Now I have permenent redness around the corners of my mouth, (which looks like fungal but I don't know) and also around my chin. Occasionally, it is itchy and flaky around the chin area, but when it isn't, it is still always a deeper red pigmentation to the colour of the rest of my face skin.

I also get periods when the sides of my nose get very red and peely, but steroid creams seem to work well on this area in just a day.

So, now (March 2004) I am taking another antibiotic called lymecycline/tetralysal and have also got ELIDEL CREAM on NHS prescription - which the hospital can not afford to give patients, but my Dermatologist wrote a letter to my GP to ask if he could kindly prescribe it. He did, as I expected, and I got it free (as I take thyroxine so all prescriptions are free anyway.)

Have been using ELIDEL CREAM on my face, (chin, corners of mouth, sides of nose, eyebrow) for 1 day now - I don't feel comfortable with it as it is burning and I don't whether what is going on there is good or not.

I worry it could be doing damage, but at least it is not a steroid cream which we all know does damage.

So I will trust the dermatologist and continue with the antibiotics and ELIDEL treatment until I see the dermatologist in a month or so.

Anyway I hope it works.

Best wishes to you all........

By Sammy on Sunday, February 22, 2004 - 05:43 pm:

Hiya,

Does anyone think Elidel is value for money or expensive? Is the cheapest tube about £20?

By Rebekka on Wednesday, February 26, 2003 - 08:17 pm:

Hi Dana,

Definately keep using elidel. One of the reactions they found when researching elidel w1as that it does give some people the itchy sensation but this tends to lesson over a few weeks of use.

I have been using elidel on my 1 year old son for two months and he has never looked better. Elidel is best used when the itch begins - before the rash appears. I use it on my son everyday because his eczema flares up if i stop using it as his eczema is so terrible.

It is so wonderful to look at my little boy and I just adore his smooth skin and it feels so lovely. He still gets really bad patches, especially if he has had a bad reaction to something or has been crawling on carpet etc but elidel works wonders for him. Our whole family lifestyle is somewhat back to normal now.

I can even work now wheras before I had to hold him the whole time he was awake otherwise he would scrath himself to bits.

I have created a product to stop small children from scratching during sleeping or simply going out shopping. It is called 'rap-a-rounz' and available through contacting me at bekky.sean@xtra.co.nz

contact me if you would like more details

Bekky

By Dana on Saturday, February 22, 2003 - 01:13 am:

I've been seeing the commercial on TV for ELIDEL and have been dying to try it!! I finally got the doc to give me a prescription for it. Just used it for the first time about an hour ago--seemed to make my hands itchy (hand eczema) but wasn't unbearable. I'm going to give it some time. I will keep everyone posted. In the meantime my fingers are crossed-I hope this is my 'miracle'!!!

By Kim on Thursday, October 31, 2002 - 01:45 am:

Hi!
My 2&1/2 year old daughter is in Elidel now. Since we applied Elidel on her skin (about 2 weeks ago), the red rashes seemed to reduce, but she still scratches her body crazily especially after napping time & night time. Besides,many of tiny pimples appear on the skin areas where Elidel is applied. We wonder that is a temporary symbol due to her skin react to the new medication or the side affect of Elidel. And we should or should not stop to use Elidel any more? My baby has eczema severely since she was 3 months old, so we always look for a miracle to stop or at least reduce her itching . So if anyone has any ideas about it, please help us.

Mom

By Marie on Sunday, June 23, 2002 - 02:44 pm:

Hi everyone
I bought a skin cream recently called BOTONICAL Therapeutic. Their creams etc comes in white plasic packaging. The selling point is that this cream is formulated for dry skin eczema, acne rosacea, psoriasis etc it boast a 100% satisfaction Guarantee, contains no animal by-products and no DEA (Diethanolamine) and Sulfate and Propylene Glycol. However it says if irritation occurs stop using.

So of course after 3 days of using this cream I develop an allergy to it. However on using it to moisturise my son, it has relieved his itching and changed the appearance of the eczema. I have been mixing it with petroleum jelly to give it a bit more staying power as it tends to dry out quite quickly. (which I know is a bit naughty but it's (petroleum jelly) the only thing I can find that does not leave you feeling dry and tight after use)

So my question is has anyone out there/ in here heard of this cream/lotion or used it before and had any kind of results good or bad.

Hope to hear from you soon

Marie

By KristiD on Wednesday, April 24, 2002 - 06:10 am:

My almost 2 yr. old son is on Elidel now and it is working much better than the Protopic!

By Christine on Tuesday, April 23, 2002 - 09:35 pm:

I live in the U.S. and have tried both Protopic and Elidel. I didn't find Protopic to be very effective, and it is also only available in an ointment formula that I find to be quite greasy.

Elidel, on the other hand, is wonderful. I started using it about three weeks ago and have had great results. It is a fast-absorbing cream and works wonders on the eczema around my eyes. I have actually been able to put away all of my steroid creams. My dermatologist has also told me that it is much safer than steroids, though I suppose there is always a risk that they'll find problems with it later on. I'd suggest giving it a try when it hits the UK market!

Good luck -

Christine

By Anil on Monday, March 18, 2002 - 07:21 pm:

Well I went to see the specialist who agreed that this is an alternative route that we can go down. However, he pointed out that although test have been done, the long term effects of using these creams are not known. His words were "we just don't know what we are setting ourselves up for in 20 years time" - which made me pause for thought a little.
He did tell me that Protopic will be available in the UK from April but Elidel will but be available until towards the end of the year. In the meantime, we are going to carry on as we are.

By Anil on Thursday, March 07, 2002 - 08:50 am:

David, thanks for your response. I am sure that we will see many more variants in this new category of drug as the knowledge in this area matures. As usual with any new form of treatment though, no one can truly be sure of the long-term effects. I guess it's a case of balancing the unknown risks against the known risks and disadvantages of steroids together with a consideration of any improvement in the quality of life for all concerned.
My daughter is now 9 months and has the usual tendency to scratch at any opportunity. Anything to suppress this and the flaring would be absolutely fantastic. I am seeing a specialist next week and I will ask about the availability of these creams in the UK and also the suitability for a baby under 12 months. Will keep you posted.
All the best, Anil

By David on Tuesday, March 05, 2002 - 04:19 pm:

Anil asks the difference between Elidel and Protopic. They are both new topical medicines, based on 'Immunomodulators'. These work in a different way from topical steroids. The difference between them is that Protopic is a preparation of an immunomodulator called Tacrolimus, whiole Elidel is made from one called Pimecrolimus. The two are the products of different manufacturers. Protopic is made by Fujisawa and Elidel is made by Novartis. Such evidence as is so far emerging anecdotally on the Internet Eczema Mailing list seems to suggest that Elidel is better tolerated and perhpas more effective than Protopic.
Best regards
David.

By Anil on Tuesday, March 05, 2002 - 10:01 am:

Whats' the difference between this and Protopic ? They seem to be very simillar to me except that this cream has been tested on babies as young as 3 months. Does anyone know if and when it is available in the UK ? If so, is it suitable for babies under 24 months (this is the age limit for Protopic) ?
Reading the information on this and Protopic has got me very excited but there seems to be a lot of 'ifs' and 'buts' about availablity and suitablity.

By EczemaVoice on Sunday, March 03, 2002 - 09:09 pm:

this from Health Media News
Elidel Media fact sheet
15 February 2002


Elidel™ 1% cream (pimecrolimus)
A new non-steroid cream for atopic eczema


Product information

Q1 What is Elidel™ 1% cream (pimecrolimus)?

Elidel is a new non-steroid cream developed for treating atopic eczema (also known as atopic dermatitis). In clinical studies, Elidel has been used to treat patients as young as 3 months of age and on delicate skin areas such as the face. It is one of the first new treatments developed for eczema since the 1950s, when topical corticosteroids – the current mainstay of eczema treatment - were first introduced.

Elidel is the only treatment proven in clinical studies to reduce the incidence of eczema flares (severe redness and swelling of the skin) and to reduce or eliminate the need for topical corticosteroids. Elidel also relieves itching – the most bothersome aspect of eczema – within a week of use in up to 70 per cent of infants.

Q2 How does Elidel™ work?

Elidel acts on those cells (known as T cells) in the skin that play a key role in the development of eczema. T cells produce cytokines, which mediate the inflammation, redness and itching associated with this disease. Elidel is not a steroid but a skin-selective inflammatory cytokine inhibitor. This means Elidel works in the skin, where it is needed, and selectively interferes with the inflammatory cascade.

Q3 What is the active ingredient in Elidel™?

The active ingredient in Elidel is pimecrolimus. Pimecrolimus is derived from ascomycin, a natural substance produced by the fungus Streptomyces hygroscopicus var. ascomyceticus. Pimecrolimus was developed by Novartis scientists in Vienna, Austria, specifically to treat and manage inflammatory skin conditions such as atopic eczema. Pimecrolimus is not a steroid.

Q4 What will Elidel™ be used for?

Novartis has applied to various regional/national regulatory authorities for approval to market Elidel for the long-term management and short-term treatment of atopic eczema in patients aged 3 months and older.

Q5 When will Elidel™ be available?

Novartis filed a New Drug Application (NDA) with the Food and Drug Administration (FDA) in the United States of America on 15 December 2000. A license was granted in December 2001.

In 2001, Novartis applied for marketing authorisations to regulatory authorities in Canada (January), Switzerland (June) and in Denmark (June).

Denmark is the reference member state for the European Union. Following an approval by Denmark, applications for marketing authorisation will be filed with other EU countries.

Administration/dosage

Q6 How is Elidel™ used?

Elidel is a non-steroid cream which is applied twice a day. In studies, it has been shown that Elidel, applied at the first signs (redness) or symptoms (itching) of eczema, prevented the disease progressing to a flare in the majority of patients.

Emollients could be used at the same time, to ensure the skin stays moist. Studies have also shown that unlike steroids, Elidel may be used for as long as is needed without any clinically relevant side effects. Elidel is quickly absorbed into the skin and is not greasy.

Elidel cream will be available in 30, 60 and 100 gram tubes.

Q7 Will a doctor’s prescription be necessary to obtain Elidel™?

Yes.

Benefits of Elidel™

Q8 How is Elidel™ different from currently available medications for atopic eczema?

Current care for eczema typically consists of emollients (moisturisers) for the dry skin stage. Emollients are not an active treatment for inflammation but help keep the skin moist. If the skin becomes inflamed – red and swollen - topical corticosteroids are the drugs most commonly used.

In contrast, Elidel is not a steroid. In clinical trials, Elidel was applied at the first signs or symptoms of eczema to prevent the disease progressing. Corticosteroids were reserved for severe disease flares (severe redness and swelling) as a rescue medication.

Elidel has been studied in both patients and body areas where topical corticosteroid use is often restricted:

· In babies as young as 3 months of age

· On delicate skin areas such as the face, neck and skin folds

· For long-term episodic treatment

Elidel is skin-selective and, unlike corticosteroids, targets only those cells which cause the inflammation, redness and itching associated with eczema. As Elidel is not a steroid, it carries no risk of steroid-associated side effects such as skin thinning, hypothalamic pituitary adrenal (HPA) axis suppression or stunting of growth.

Safety profile of Elidel™

Q9 Does Elidel™™ have any side effects?

Elidel has been studied in almost 2000 patients. It has been used in babies as young as 3 months and on all skin areas, including the most delicate areas such as the face, neck and skin folds. In clinical trials Elidel was well tolerated.

The most common cutaneous (skin) side effect was a temporary feeling of warmth or burning where Elidel was applied. This was mild and transient and occurred in about 1 in 10 children.

Blood concentrations of Elidel are consistently low (below 2.6ng/mL), even in babies where the cream was applied to as much as 92 per cent of the body surface, and no clinically relevant drug-related systemic adverse effects were reported.

In addition, as Elidel is not a steroid it has not been associated with steroid-related side effects such as skin thinning.

Q10 Can Elidel™ be used in young children?

Elidel has been studied in patients as young as 3 months. In babies (3-23 months of age), Elidel significantly reduced the number of eczema flares (severe redness and swelling), and reduced or eliminated altogether the need for topical steroids.

70 per cent of babies treated with Elidel at the first signs or symptoms of eczema did not develop disease flares over 6 months and did not need any treatment with corticosteroids. Similar results were seen in 711 children and young adults (aged 2 to 17 years). 61 per cent of patients treated with Elidel experienced no flares over 6 months and did not need any corticosteroid treatment.

Elidel has also been shown to relieve itching within a week of use in up to 70 per cent of infants.

Future of Elidel™

Q12 Is Elidel™ being tested for other inflammatory skin conditions?

Preliminary data show that Elidel could potentially be used to treat psoriasis and chronic hand dermatitis. Novartis will continue to support research into these areas.

Manufacturing

Q13 Who manufactures Elidel™?

Elidel is manufactured by Novartis Pharma AG, Basel, Switzerland. Novartis (NYSE: NVS) is a world leader in healthcare with core businesses in pharmaceuticals, consumer health, generics, eye-care, and animal health. In 2000, the Group's ongoing businesses achieved sales of CHF 29.1 billion (USD 17.2 billion) and a net income of CHF 6.5 billion (USD 3.9 billion). The Group invested approximately CHF 4.0 billion (USD 2.4 billion) in R&D. Headquartered in Basel, Switzerland, Novartis employs about 69,000 people and operates in over 140 countries around the world. For further information please visit the Novartis website at www.novartis.com


Background information on Atopic Eczema

Atopic eczema, also known as atopic dermatitis, is the most severe type of eczema. A patient’s skin is typically dry, rough and scaly. From time to time it becomes inflamed - red and swollen - and itchy. Itching is the most bothersome symptom of eczema and many patients have an uncontrollable urge to scratch, sometimes scratching so much that the skin bleeds. Scratched, broken skin can become infected and weep and form crusts, which leads to more itching. This is known as the itch-scratch cycle.

Atopic eczema typically begins in childhood, with about 60 per cent of cases being diagnosed in the first year of life. There are no guarantees that a child will grow out of eczema. However, research has shown that 60-70 per cent of children are virtually clear of the condition by the time they reach their mid-teens (1). For others, the disease can last a lifetime.

Healthcare professionals often refer to eczema, asthma and hay fever (allergic rhinitis) as the ’atopic triad’. Although eczema tends to run in families, genetics are not the cause in all cases.

Prevalence

Up to 20 per cent of the world population is affected by atopic eczema at some time in their life. In the United Kingdom:

· one in twelve of the adult population has eczema (1)

· it is estimated that the prevalence in children is currently in the region of 5-20 per cent by the age of 11 (2)

· 30 per cent of general practice consultations and 10-20 per cent of dermatology referrals are due to atopic eczema (3)

Research shows that the incidence of atopic eczema has increased by about 30 per cent in the last 30 years (4), and the prevalence is highest among:

· industrialised Western countries

· immigrants to Western countries

· urban rather than rural areas

· privileged socio-economic groups and smaller families

It has also been shown that:

· the increase is most obvious in children and young adults

· the prevalence rises with increasing industrialisation in developing countries

This suggests that changes in environmental factors and lifestyle may account for the growing prevalence.

Causes

Research indicates that atopic eczema is often passed on from parents to children. A child with one parent who has an atopic disease (atopic eczema, allergic rhinitis or asthma), has a 25 per cent chance of developing some form of atopic condition. For a child who has two parents suffering from an atopic disease, there is more than a 50 per cent chance of inheriting atopic eczema (5).

However, certain environmental factors may also trigger eczema:

· allergies - it is thought that people with atopic eczema are sensitive to allergens in the environment which are harmless to others (1)

· extremes of temperature

· rough fabrics (including wool)

· anxiety and stress

Symptoms

Atopic eczema can extend over the entire surface area of the body. However, the most commonly affected sites include the face, flexures (creases of the elbows and knees) and hands. Common symptoms include:

· dry scales on the skin

· inflammation – redness and swelling of the skin

· intense itching (pruritus)

· scratch marks

· thick, dry, leathery skin – a result of constant scratching and rubbing

· small raised bumps that may open when scratched, becoming infected, weeping and crusting

· inflammation of the skin on and around the lips

Impact of Atopic Eczema on Quality of Life

To note only the symptoms of atopic eczema would be to take insufficient account of the effect the condition has on sufferers’ lives. Some of the effects include:

· severe discomfort from itching

· associated sleep disturbance, both for the sufferer and their family

· social ostracism

· the need for special bedding and clothing

· avoidance of activities which dry out the skin, such as swimming, and activities leading to sweating which can be painful. This in turn, especially amongst children, leads to a sense of being ‘left out’

· the need for frequent applications of greasy, staining ointments, and associated washing of clothing and bedding

· frequent trips to the doctor, and time off work or school to accommodate these (6)

According to a recent survey in the United States by the National Eczema Association for Science and Education (NEASE), 92 per cent of respondents felt embarrassed or self-conscious to be in public during an eczema flare. Atopic eczema also disrupted sport or outdoor activities in 78 per cent of patients, daily activities in 76 per cent and leisure activities in 77 per cent (7).

The National Eczema Society paints a similar picture (8). In a postal survey of 3,000 callers to their Information Line, 58 percent of respondents said the eczema affected their choice of clothes and 38 per cent said it affected their social life. 16 per cent of the survey population stated that the condition affected their relationships with other people.

Care and Treatments – Current and Future

The current standard of care for atopic eczema is skin care with emollients to keep the skin moist, followed by the intermittent use of topical corticosteroids to suppress inflammation. Less common treatments include tar derivatives – although their use is limited because they are messy - and phototherapy. In addition, antihistamines may be prescribed to relieve itching, and antibiotics to treat infection.

The mainstay of treatment – topical corticosteroids - are often not suitable for many patients. Babies are particularly susceptible to the side-effects of topical steroids such as skin thinning. In addition, growth retardation may occur in up to 10 per cent of children referred to hospital with atopic eczema (9). There are also limitations on the length of time they can be used (many should not be used for more than 2 or 3 weeks at a time), and the stronger corticosteroids are not recommended for delicate skin areas such as the face.

Many parents have concerns regarding the use of topical steroids and their side-effects (2) and patient fears about using topical steroids have been shown to lead to poor compliance (10). 72.5 per cent of patients are worried about using topical steroids and 24 per cent of patients admit to being non-compliant (10). Consequently, there is a medical and patient need for alternative, non-steroid treatments.

A new class of non-steroid drugs in clinical development may offer doctors and patients a new option for the long-term management and short-term treatment of atopic eczema. Anti-inflammatory cytokine inhibitors, such as Elidel™(pimecrolimus), specifically target the cells (T cells in the skin) which are responsible for the inflammation, redness and itching of atopic eczema.


References:

1. Frequently Asked Questions (2001) National Eczema Society http://www.eczema.org

2. Stevens A, Raftery J, Dermatology Health Care Needs Assessment, Radcliffe Medical Press, Oxford (1997) ISBN: 1- 85775- 211- 2

3. McHenry PM et al, Management of atopic eczema, Brit Med J (1995) 310: 843- 847 [XDIS 109476]

4. Quick Facts About Atopic Dermatitis (2000). American Academy of Dermatology, http://www.aad.org/pressreleases/facts_dermatitis.html.

5. Acta Dermatolo-Venereologic. Uehara, M and Kimura, C., Stockholm 1993; 73:62-63.

6. Systematic Review of Treatments for Atopic Eczema. HTA 2000

7. Atopic Dermatitis in Pediatric Patients: Perceptions of Physicians and Patients. Paller, A, McAlister, R, et al

8. National Eczema Week Fact Sheet, 2001

9. Kristmundsdottir F; David TJ. Growth impairment in children with atopic eczema. J R Soc Med 1987 Jan;80(1):9-12

10. Charman CR et al (2000) BJ Dermatol:142:931-936


Source: Novartis


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By bigjoandl on Sunday, March 03, 2002 - 01:46 pm:

I have just been looking into a new cream called elidel it is for mild to moderate eczema and is another option apart from protopic .Does anyone know if it is available in the UK yet? Has anyone they know tried it and if so what where the results

By Yelena on Friday, September 06, 2002 - 03:43 pm:

Hi

I have had atopic eczema all my life,and used numerous steroid creams. Chinese herbal treatment helps, but is time-consuming. Exclusion diet helps, but is very difficult. Steroids help, but do not cure.
When I was in Cyprus, in February, dermatologist told me that there is new medicine about appear in Europe this summer called Pimecrolimus cream. The cream is not steroid, and is supposed to be really good for eczema. Has anyone heard of it? Has anyone tried it, and if so, is it any good?
Y.

By Christine on Thursday, December 12, 2002 - 06:03 am:

Kiang,

I'm sorry to hear that Elidel is so expensive in NZ. I've been using it since April, and I have found that a little goes a long way. Maybe you won't need to use as much as you do of the other creams.

For me, Elidel has been particularly effective on the face. Unlike steriod creams, Elidel is safe for the eyelids and lips (according to my dermatologist). One strategy may be to use Elidel on your face and more severe spots, and then use the steriod creams elsewhere. I combine both steroids and Elidel because I actually find the stronger steroids to be more effective on my hand eczema.

Despite the cost, I would suggest giving Elidel a try. I have used both Elidel and Protopic, and I found Elidel to be much gentler and more effective. But it probably depends on the individual. I am afraid, however, that Protopic may not be any cheaper than Elidel since they are both so new.

Good luck -

Christine

By LULU on Tuesday, November 05, 2002 - 11:50 pm:

Kiang-Try Protopic it has saved my life. I also had it all over body. 90% I started using Protopic 1% in a 60mg tube and it cured 85% of it. Yes, it is costly 128.00 a tube. I use up one tube in 2-3 weeks. But its worth it. No dark spots. No scratching. No bleeding. No embarassment. No more crying. No more depression. No more self-embarassment. No more Flaky lulu.

I am extreamely happy now. Yes it will cost me probably about 3,000. u.s. dollars a year to get rid of 85% my eczema but it has earned me my life. I now have a life.....................

I can honestly say that i am happy now. (tear)

By Kiang on Tuesday, November 05, 2002 - 09:38 am:

Hi all,

I have recently found out that Elidel is available in New Zealand. But I was told by my doctor that they are expensive. $65 NZ ( or $30USD) for a 15g tube. For a 100g tube it will cost more than $200 NZ ($100US). I was shocked by the price.

I have moderate to severe eczema all over my body. Elidel is not a long term solution for me, as it's far too expensive (I can use up a 15g tube in 2 or three days). It's as if i am applying gold on my body if I use this cream.

My question to you all is do you use this Elidel cream for just small areas of your