Elidel (Pimecrolimus)
Posted , 6 users are following.
My Dermo has suggested this as a try as Clob is causing me irratation - has anyone had success or used? Thanks
1 like, 37 replies
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Notes on Elidel (Pimecrolimus)
Ozzie0 Jess1612
Posted
I've had this awful problem since I was 31, (I am 65 now). It has gotten so bad that everything was white, burning, swelling and itchy. It hurt to even sit down. For about the last 25 years I used Clobetasol with only minimal results. It got so bad I was using it every day and it still was getting worse.
My GYN said it looked so bad that she did a biospy on it. Here is the blessing in disguise: She gave me a solution of 500 ML of saline and14 oz of 3% hydrogen peroxide to spray on the area until it healed up from the biospy, (which turned out negative). Being a diabetic, healing doesn't come easily to me. While I was using that solution at least 3 times a day, I noticed that the usual swelling, burning and itching seemed to subside. It's now been a year and a half...no swelling, burning or itching! I have not had to use the Clobatasol even once! This is amazing to me because I was told that nothing would improve it. So, now I am down to using the spray once a day with continued improvement. What a relief this has been. I hope someone else can try this and get some relief.
One more thing. Spraying this solution is not an overnight cure. I had to use it for weeks to heal up the wound from the biopsie, (little did I know it was also healing the LS). However, if it works as well for you as it did for me, it is well worth the effort. Not having all the symptoms that goes along with LS and not having to use Clobetasol, antibiotic creams and other stuff is such a God send. I literally just spray this stuff on and forget it....amazing! I just wanted to put this out there in case it could help someone else.
Here is the formula of Hydrogen peroixide and saline solution:
500 ML saline mixed with 14 oz of 3% hydrogen peroxide.
Then I put it in a travel size spray bottle and spray it on after a shower, (I useh to spray it on after each bathroom use...up to 4 times a day, but now only use it once a day. Some days I even forget I have LS...isn't that amaziing??? I hope this works for someone else.
Jess1612 Ozzie0
Posted
lynne1945 Jess1612
Posted
Im still battling on waiting for next appointment with dermo but with strict instructions not to use clobetasol after last attempt. I have no treatment going on at all while I wait and have had a bacterial infection and two bouts candida being treated with the great big oral tablets. Three of them so far. A and E doctors last Saturday for burning urethra and unable to pee easily.
my dermo sent a letter to my GP which was copied to me and she is contemplating putting me on a drug called methotrexate.
anyone else on this drug? Oh I did restart the prednisone again after a hissy fit of one day when I stopped lol
oral LP has begun to plague me now just to put the icing on the cake (sugarless of course plus gluten and dairy free!) and getting lumps and burning little lesions around gums and palette. My dietary selections decrease by the day.
Ozzie, glad your little trick is working for you. I have seen the same enthusiastic letter from somewhere and someone else on here or another website and was so encouraged I went right out to get the stuff. My chemist just refused to sell it to me when I told her the purpose, told me I had to ask the doctor and it just didn't seem right to her at all. Maybe it's my lesions she was worried about and when no lesions who knows eh. Looks like you have something sussed for you and that's all any of us want to get to!
Good od luck all!
Jess1612 lynne1945
Posted
that last time I visited my Dermo he had a UK Dermo with him who is purchasing his practice. She sat in on my consultation and she has seen a lot of LS and LP in the Uk - she said she "doesn't think" this is my problem.... I was a bit taken back and said to them both well what do you think it is then and both said they were not sure but obviously something was causing all the issues but I am not typical of either LS or LP and this is when the suggestion came to use the Elidel and a 3 month course of Antibiotics. One week later and just yesterday I went to the Gyno who has always said LS - now she said she tends to agree with them!!! .... She said the only reason she thought LS when she first saw me was was due to absorbed Labia Minora. I am totally over it to be honest and wish that they just all had the knowledge to diagnos the issue. So after all that rant yes I will give the Elidel a good go and see if it calms problems down. Will let you know. How are things for you - has the Predisone helped?? This has been another suggestion for me next. I am feeling sorry for myself thinking another hot Xmas in this situation 😂😂😂
Ozzie0 Jess1612
Posted
lynne1945 Jess1612
Posted
Anyway, she thinks I need a specialist physio for my slight bladder prolapse, I really think it'll be a while till I worry about that! Just take this burning away already and 'then' let's sort out other issues!!
she prescribed me Nortriptyline for helping with the pain receptors she said but when I read up on it I am not taking it, it comes with side effects and Prednisone is enough to be going on with. So I went into a slump for a bit and yes Christmas and the weather and the rush and all that stuff is just daunting. AND you are working, which at least I haven't got to do these days!
To answer your question re prednisone, I just don't know if it's helped or if I am just getting used to feeling like someone threw a bottle of chilli sauce into my downstairs department. I am getting lots more exercise these days as I am on my feet moving about constantly due to not being able to sit. I keep trying to be positive and think of the benefits of weight loss and exercise, but boy, what I wouldn't give for a sugary treat once in a while. 😏 Keep your chin up Jess, we'll get there in the end just like many here! Thank goodness for this forum and the likes of Morrell and Guppy and their common sense and knowledgable support, plus many others.
Hugs and positive thoughts to you xx
Jess1612 lynne1945
Posted
My burning only subsided when I went cold turkey on all products. One lady on this site she she did it for 6 weeks so I followed that advice and on the sixth week the burning was almost gone! It flares up at times but has never been as bad and is for shorter periods of time (touch wood now I have said that). It made sense for me at the time and I was so sick of using this and that to try and calm things down I think I made it worse. Good luck Lynne and stay in touch. xx
lynne1945 Jess1612
Posted
just an update on my battle with Clobetasol, as I know you have issues with it too.
Specialist last week and this time she concedes that's it's doing nothing but burning me, she thinks I have a steroid intolerance and may explain the fact that the prednisone didn't help too. I need to have a patch test in winter, (the patch sticks on my back for five days and I can't sweat or shower, hence being winter I guess!) Then they will know conclusively I suppose.
So in meantime I am using Mometosone, which I actually thought was a steroid but less powerful, but anyway it doesn't burn as much.
Now thrush has arrived and won't go away, am on Fluocazole (sp) oral and have to stay on maintenance monthly dose of that because it won't go away.
Will 2016 be a better year I wonder? And isn't it hot! Whew.
Hope you are better these days and having a break over Christmas.