Elidel (Pimecrolimus)

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My Dermo has suggested this as a try as Clob is causing me irratation - has anyone had success or used?  Thanks

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  • Posted

    I've been using Protopic (tacrolimus) for eight months and have a checkup with my gynae today. I'm planning to say it's worked better for me than clobetasol. I'll let you know what she thinks. It does burn a bit sometimes, but less over the months. I use it every third night.
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    • Posted

      Morrell, are you continuing with the protopic still. I know you have said its good for you. Did you ask to change to something else because the Clob wasn't working or it burnt you? Was protopic the only other option?

       I am very interested as I am trying clobetasol once again at the advice of my new dermatologist. Prednisone orally for three months is supposed to take away the burning while I reintroduce it but after only four days application I am in much pain and also have two blisters erupted on top of the lesion plus a bright red burnt rash where the cream has transferred to healthy tissue. Fifth attempt at this at the professionals insistence and am over it!   I can't even use the most mild soothing emulsion right now  as everything burns. Having a wee is a torment! 

      I am speaking to her (derm) tomorrow and am going to ask her about protopic. Just hoping that in our country it's an option, and available.  Or maybe Elidel as Jess mentions. Anything, just not Clob.

       

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    • Posted

      Hi Lynne I haven't tried the Elidel yet I have been waiting to hear what others have thought if they had used it. No response from anyone using it so far.  I am just so worried to put anything more down there. I had been several weeks without Clob and things were settling, not totally gone by any means but I feel dampening down then I used the Clob as I was really sore on one side one particular night and boom all flared up bright red again and very sore!  Went to my normal Dermo Friday and he had new Dermo with him from UK - she said she didn't think my problem looked like LS however they can't tell me what it is and suggested a 3 month course of antibiotics - I don't know who to believe and what to do very drepressing .... 
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    • Posted

      Oh gosh Jess, it's bloody awful isn't it?!  My derm told me my LS was actually Lichen Planus, after me being treated for LS for 16 months, so yeah you do wonder what to believe.  Tis very depressing, I can just about cope with it except when the burning goes on for days .... then it's hard.

      I am in NZ and we don't have specialist dermatologist health in my city so I must travel several hours away. It's private practice and expensive and hard to sit in car so all round a nightmare. Wouldn't even mind if the treatment worked.

      Hope you get yours sorted out soon, antibiotics, that's hard on the body too. Don't forget your probiotics, you don't want thrush on top! cry  

      Prednisone is tough to take, only on third week and have horrid side effects but must box on and hope for the best. 

      Where are you? U.K.? 

      Take care, we'll get there in the end, like lots of the ladies here. They always give me hope. 

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    • Posted

      Lynne, my gynae switched me to Protopic after 18 months on clob because she wasn't impressed with my degree of improvement. The other day she looked and said my condition was the best she's seen it.

      This may be more because I'm contentedly living alone - I booted my 4-year live-in codger 8 months ago. But I have no reason to want to switch back, so I didn't tell her that.

      I have the impression she would prescribe it for more of her 1000 LS patients if protopic weren't a lot more expensive than dermovate/clobetasol.

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    • Posted

      Ah, the Protopic is expensive, I should have guessed why it's not offered. We, in NZ, no doubt, only have funding for the Clob, but I shall find out. I won't say money is no issue, as it is, but not when it comes to quality of life.

      Sometimes  I wish I could live a calm existence in a hut in a woods without husband, for perfect peace, but after 44 years he won't leave! There's no such thing as a stress free life with men, and kids. 

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    • Posted

      Morrell, off topic with this subject but know you have said you have had problems with thrush in the past. Where you treated with Fluconazole one dose tablet  PLUS a thrush thrush cream? i ask because I am two days into the tablet and symptoms not abating, now am Wondering if I need both, is it usual? i never had thrush much but it' seems to have set in. This is the fourth bout in a month. Yikes!

      And sugar is out of my life but stress is a different story at times. I know you are going to advise that too. 😀 Stress is just waiting round the corner, it's so hard to deal with at times. Happy holidays and good health. 

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    • Posted

      I have never taken an oral tablet for yeast. The one-dose 'football' I mentioned is inserted in the vagina and on me feels like a blowtorch. Even the three-day, three-football kind is too strong. My gynae told me to use the seven day cream that comes with an applicator. I had half a tube left over last time and I use a touch of the cream inside and out if I even think yeast is growing.

      We use the word stress, encouraging the idea that it's external. Whatever is coming at us, it's our reactions that influence our anxiety level. My time post-diagnosis with all the hindsight I now have on 40-odd years of LS and my experience with all the women on this forum – I'm convinced that most of us are fascinating, creative, excitable, vibrant, intense women. I wouldn't have it any other way, but this sort of makeup does respond to management via mindfulness. I was a hardcore Tibetan Buddhist for twelve years, but religion isn't for everyone and it isn't for me any more. Best piece of advice I ever got from a Tibetan lama (or anybody else) was, "Never mind good/bad – it's all in your attitude."

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    • Posted

      Thanks Morrell! And of course you are right, it's never really what the external issue is, but all about the way we handle it. I am presently being encouraged to practice mindfulness by a counsellor who sees me in my own home environment. Once I would have thought what a load of airy fairy tosh,  but changing my mind rapidly now as nothing else is working. I know now that when I get wound up the burning begins, it took me a few months to think about anything else but the diagnosis and get to grips with the panic. (Antidepressants really do help!) After that it's sink or swim, and I've decided to swim. 

      It's only been 6 months of bad symptoms, mind you it feels longer sometimes. Can't wait to feel normal for just one day. 

      I would also add 'perfectionist' to your list of probable attributes regarding the lovely ladies on here, at least in my case I can add it definitely. 😊

      I like the advice you got from the lama, and passed on! Mind boggles at hardcore Tibetan Buddhist. Bet you have some tales to tell!

      As for the thrush, well, I have the three day cream just bought before I saw your answer, so will just have to try it out and hope for the best. And try some mindfulness from time to time. 

      Have a happy Christmas. 

       

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    • Posted

      My best tale is the one about the Buddhist nun who moved in with me, my two teenaged sons and a common-law husband of ten years. She was a California social worker before becoming a nun. She sat in my living room, witnessed my life and how I catered to everyone as well as having a high-pressure career and said, "What's all this crap?" and "What are you doing with him?" and mimed boot-kicking to let me know what she thought I should do about my unemployed son. I became single, sent my sons packing (with suitable supports), downsized, and four years later moved to the bush. My sons are great, I do just enough work from home to eat beans, and I'm still Facebook friends with that ex.
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    • Posted

      I love that story.

      Yes, I could have done with my own in -house counsellor, not to get rid of the husband, he's a keeper, but to help me see how  co-dependant me and kids were and how when they left I was left with a hole in my heart that didn't fill for many years. Instead of moving forward I stayed in the past and mourned. Stupid woman. Retrospect eh? Started getting sick about then and all stress related.

      Now 25 years later, when the damage is done, I have had to withdraw from my son and his multiple crises and disasters of the financial and other kind and become less available to him to be kinder to me. It is hard but I'm doing it. 

      I often think gosh wouldn't it be great to have a second go at it. 😏

       

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    • Posted

      Ah, lots of that going around. Everything's not perfect with my two, not at all. But they're adults, how much can I do? I enjoy my conversations with them, which sometimes involve high drama, but I can't fix anything and I'm OK with that.
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    • Posted

      And that sponging ex I gave the heave-ho to? Just today I see on Facebook he's found a woman who's made his dream come true, a solo art show in her pub. People commenting that they'll be getting married. Poor girl, didn't see it coming. I've done it again since, so who am I to talk?
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  • Posted

    Just realised that we have had a conversation a few months ago about our similarities and diagnoses! Such a shame neither has got a decent answer yet for treatment *sigh*  

     

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    • Posted

      Hi yes I am in NZ to - Nelson.  We do have a good Derm here but he's retiring so I saw this lady that is taking over his practice on Friday.  From my own research I thought mine looked more like Lichen Planus but she said no it wasn't nor is she think it's LS yet 2 Gynos have told me that it is - It sends you into a head spin.  Be keen to know how the Prednisone works for you!  What are the side effects? Do you think it has helped? 
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    • Posted

      Yes, in one way the prednisone helped, it switches off pain receptors or something so everything calms down including all aches and pains everywhere. But the side effects are many and damaging long term. In my case it makes me manic for hours, then an exhausted wreck. Appetite voracious, sleeplessness, pins and needles in legs. I was told I had to use it to stop the Clob burning when I started it again 10 days into the prednisone treatment ... But the Clob pain and burning began again within two days of application. So I guess the answer is it didn't help to achieve what she wanted, me back on Clobetasol.  Now I am stuck with tapering down from this awful drug I guess. God knows. At least I don't have to work! 
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    • Posted

      Hi Lynne - Gosh I am very sorry about this for you.  This is why I haven't used the Elidel yet because I don't want any more problems!!  I have also been given an antibiotic for 3 months.... Haven't started that either because I believe antibitoics are where it all started!! It's a real nightmare.  I hope you see some benefits soon and can have a better Xmas/New Year.  
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    • Posted

      Hi Lynne the Elidel was $50 for a 15gm tube. As you say you would pay what's needed if it gave relief!! I am very dore today so going to have to try it, I will let you know how it goes.
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    • Posted

      If Elidel is equivalent to Protopic, it does burn a bit the day after, but maybe not the way Clob burns if you're one who can't tolerate it. I hope it works for you. I'm using so little Protopic, I think maybe $80 a year.
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    • Posted

      Morrell, I wonder if you can once again tell about the oils you use and the proportions. Or direct me perhaps to your post which details it?  It went over my head earlier. Because I was panicking and stressing at the start. 

      Can it go on lesions or is it ideally for the white LS type of skin? If not the lesions then I will probably not risk it.

      I will write it down this time and thank you in advance!

      Lynne 

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    • Posted

      Happy to oblige, Lynne. I bought a bottle of jojoba oil, a bottle of pure frankincense essential oil (never to be applied to the skin 'straight') and a 25 ml dropper bottle. Ifilled the dropper bottle with jojoba, then added thre drops of frankincense to it. I drop it onto my finger and slather it on, as often as you like and, yes, on lesions and other kinds of flared skin.
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    • Posted

      Jess, how are you doing? 

      I went to doctor (GP ) today because blisters and burn. She took a swab, said probably won't show anything but white cell count up, but looks mildly infected, so ouch and ABs start today and she wants me back on the Clobetasol. Seems she can't change my meds as specialist prescribed them. Can't blame her really, so many different doctors getting involved now it's getting messy and have to sort out a primary carer to trust! 

      I have stopped the prednisone. It's horrible.

      Today I am trying calmness and not getting into the "why me". 

      Really hope you are getting some relief and also an answer soon. 

       

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    • Posted

      Hi Lynne sorry to hear you are feeling so low. It is such a roller coaster.  I know what you mean about too many doctors and different opinions - it's very hard to know what you should be doing.  One thing I have been constantly told by Dermos is "if this was LS it would have responded to the Clob much quicker and you wouldn't have so much discomfort" - they give me the impression that Clob takes the problem away altogether until another flare up - then you start the Clob again and so on.  My problem has never gone away and what I read here nor has a lot of other LS sufferers. I have read that LP like you have now been told you now have actually does go away within 12-18 months in most patients - have you heard this? Like you I wonder why me and feel sorry for myself but do know that it could be worse and a lot of people have much more to deal with, but we are only human and it's natural to feel this way.  I hope things settle for you with the AB.  Keep in touch and let us know.  
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    • Posted

      Jess, was wondering if you did try the elidel in the end? 

      Oh, wish it was true about the LP but sadly not. Been told several times this is for good. As you say, natural to feel a bit blah till we can get some control over it ... whatever it is! 

      The Clob is a problem to loads of people especially at first but hopefully we'll learn what works for us for maintenance like some of the folks here. I think the way most people use it here is never to stop it completely but once or twice a week perhaps. But everyone is different, that's the one surety I've learned from here. No one treatment fits all.

      On a plus note I bought a really nice long skirt today from Max (you have the brand down south?) and got a free t shirt with it lol. Long skirts are my new best friends these days, nobody will ever guess what you have on or not have on under them. confused 

      Take care

       

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    • Posted

      Ha ha had to laugh yes I wear dresses now and often go out with nothing underneath! I am lucky I work in an all female office and I have told them all of my problem so they are all supportive. We have a fridge in the office and I find by 3pm in the afternoon I need an ice gel pack to dull the pain so they get a bit of a laugh as I stuff this under my dress. No haven't tried the Elidel yet but I am going to and will report back.  Things are a bit more settled than they have been for a few weeks so I am scared to try something new especially at the moment as I am needed to cover staff away at work, and they have been great covering for me so trying not to let anyone down. You sound a bit brighter so that's good.  We just have to keep going. Been nice to have someone else to chat and vent to.  My friends and work mates are good but there's only so much they want to know and I don't think unless you go through this that anyone truely understands how deliberating this condition can be, normdomtheynseem to,understand that it's not just take a,pill slap on some cream and move on!! I will let you know when I've tried the Elidel. Hope things look up for you😍
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    • Posted

      Just strolling through this thread and came upon your oil mix. Is this for soothing? After kind of a misdiagnosis, (I was told I had LS but was basically told to apply the steroid and that would clear it up...never a word about it being chronic. I don't even recall when this was, that's how downplayed the condition was -  I rediscovered the LS because of pain while have sex several months after having a baby recently. The gyno I saw identified the LS, and fusion, plus vulvar vestibilitis. I'm moving to Vietnam in January and I'm not sure the availability of a steroid cream, or what I'm going to have to go through to get it, so I'm open to any other suggestions for management.
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    • Posted

      I use the mix because we had a young man on here last winter who swore it released the adhesion LS caused between his glans and foreskin. Frankincense is a traditional herbal treatment for skin ailments anyway. At the very least the mixture is harmless and, yes, soothing – at best I give it 50% credit for my own improved condition, along with almost a year of Tacrolimus. But then my stress level has gone from 8/10 to zero over the past eight months. You have to factor that in.
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