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I have some atrophy from LS, and a dermatologist I saw recently prescribed Protopic ointment (Tacrolimus). Has anybody had any experience with this medication? I applied it this morning for the first time, and I am having an itch and I feel some heat, but there is no redness. Is that a side effect that will go away eventually? Please, share your experience! Would that help with atrophy, too?

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  • Posted

    Heat and itch are normal. I found that the heat lasts for an hour or so, the itching for up to 12...but only for a few weeks. Then it all dissipates and the skin seems to start to heal. By the way, you should use a small amount and rub it in for about 90 seconds to get it deep into the tissues.

    Don't know about the atrophy, but I've been using it about 3 mos with very good results. Skin looks "normal" according to 2 dermatologists.

    • Posted

      thats good to hear that skin looks good. im scared to take it!

    • Posted

      Lynn, I read the research and took some of the articles to my Derm. The advantage being that it has shown, in some cases to change the LS at the cellular level. She looked into it and said that it is an immunomodulator not suppressant and that if it is not used on a large area of the body and not overused, and monitored, she has no concerns. It is used routinely for other dermatological conditions, over a much larger area of the body.

      I use it 1x a day, 4 days a week, but am beginning to taper down...I'll go to 3 days a week soon, then I presume 2, then 1. So, I have a tube that is 100 grams. In 4 mos, I've used maybe 1/10 of the tube...so maybe 2.5 grams a month. There was a scare story last week on the FB page where someone had an article that talked about steroid use and cushings disease. Well, it turned out that the subject in the article was using 100 grams of steroid a WEEK. He had an all-over-the-body problem. So, while we all try to be diligent about looking at the risks and benefits, we also need to be careful to understand what we're hearing.

      I'm also tapering my steroid, down to 2 days a week.

      All is stable.

      Oh - one other thing about Tac...it is not an "instant relief" treatment...you're not going to feel better in an hour, or day, or maybe week. The idea is to treat the cells...which actually might be uncomfortable and will take weeks/months.

    • Posted

      I agree with SnappyCat here on the tacrolimus. That's pretty much what my doc said too. I used it 2x a day for a month and then stopped. It reduced the redness of the skin. 100 grams is about 3 oz. I wouldn't worry too much about the small amount you'd be using. Just be watchful for drastic changes but the tac won't "fix" things in a few days. Mine got better in a month.

  • Posted

    ive been prescribed it but am afraid to take it because its so strong and i heard it is an immuno suppressant . ive started Perrins and im already noticing a difference in skin color. let us know how it goes. the symptoms should dissipate in an hour ive heard

  • Posted

    Hi Vita, I just started using Tac Oct 15th and have a follow up with the dermatologist on Nov 15th. Have been applying it twice a day though I think once a day would have been better tolerated. I don't get an itch or any heat, but I do get an uncomfortable pinching feeling that eventually goes away. Some days I have to apply an oil over the ointment. That may lessen the effect of the Tac, but it helps lessen the discomfort.

    I'm curious how you ended up seeing a dermatologist. Were the steroids not working?

    My only LS symptom is a buzzing feeling which developed about 6 months after I was diagnosed and was using a mid-level steroid and hormone cream. Saw my gyn who said everything looked fine, most signs of the LS had disappeared and she wasn't sure what the buzzing was. I went away for months and the buzzing never stopped so I increased the use of triamcinolone after someone on this site told me it was LS as she had the same sensation. When I finally saw my gyn 5 months later she said the LS had spread, so I then started on Clob. That stopped the buzz...till it didn't. So after 3 months of daily Clob use I made an appt with a derm to ask for the Tac (which I learned about here). As the buzzing actually stopped 3 days before I saw the derm I have no way to judge if the Tac is having any effect.

    There are some women here who are further along on the Tac journey and will have more info.

    • Posted

      Good to hear from you Beverly...I suspect you're right about 2x a day...seems like overkill...but, what do I know? Are you still using clob at all?

      I'll probably drop one of my "Tac Days" in a week or so...I'm feeling pretty good!

    • Posted

      Hi Snap. I am using the Tac x2 ,5 days a week. On weekends I go back to only Clob at night. Not sure what to think of the Tac. Didn't you say after a month it didn't bother you? I'm looking forward to that.

      Did you encounter any problems with your insurance covering the Tac? The dr told me it was $800 a tube (obviously she meant Protopic) and the insur. co may not cover it. They did not so the dr suggested I use a compounding pharmacy in PA that would make it for around $100 (don't remember exactly). I contacted the insur co, was told it would only be covered (and in a lower tier) for lichen planus. I complained mightily, contacted the derm and she sent them info on a med study on the efficacy of Tac for LS. It was then reconsidered and approved. I certainly hope everyone doesn't have to do that with BC/BS!

      When I had Tufts I went to the pharmacy to pick up Estrace and was told it was $350! Had that compounded for $80. Think I pay $30 now with BC/BS. Craziness. As if it isn't bad enough having the condition.

    • Posted

      Hi Beverly

      I also have buzzing and was told by my GP that 'cell activity' was the cause. My buzzing comes and goes for no apparent reason now and steroid calms it. GP gave me amytryptiline to help tune it out, but I am not taking that anymore. I am going to ask about Tac when I next see my dermatologist as ladies on here seem to be getting good results and if it tackles the LS at a cellular level as Snappy has been told, it seems to me to be essential.

    • Posted

      Hi Sarb, I associate the buzzing with LS spreading because after months of feeling it last winter (and using the Triamcinolone nearly constantly) when I got back home & saw the gyn she said it had spread. She put me on Clob at that point but eventually the feeling returned. Unfortunately the dr left the practice and none there are specializing in skin issues. After going months with the buzzing and constant Clob use I finally found a dermatologist who deals with gyn problems.

      I get no other symptoms other than a pinching feeling which the Tac seems to accentuate rather than soothe, but I'm just 2 weeks into it. The jury is out in my case, so I can't recommend it yet.

      I think women with more severe symptoms like splitting skin or sores find the Tac painful to use.

    • Posted

      Dear Sarb,

      What bugs me about what you've said is that the dr wants to cover up what you're feeling by giving you amytryptiline because he/she cannot/will not investigate WHY you have this cell activity.....What cell activity? Is it a pigment loss? Is it basic inflammation? Is it vulvar intraepithelial neoplasia? WHat? Has doctor matched this cell activity with any blood tests? Why should we even be asking these questions when we are paying these people to work for us? Sorry, but I know so many are suffering and drs do little or nothing. We end up being our own physician.

    • Posted

      eggbiscuit - I am in UK and my experience is that gynae, dermatologist and GP can only treat what has been diagnosed. When I first saw my GP about this 5 years or so ago, I was really scared about what was happening and the buzzing was driving me mad, hence her suggesting amytriptyline. It wasn't given to me to fob me off. As I understood it, cell activity is the LS working against my body and the only solution doctors have is steroid ointment. I have never had white patches, my main symptom is loss of architecture which has slowly worsened (very slowly). I take your point about investigating further though and that is never suggested by any doctor I see. At the moment I am not suffering too much and my management seems to work. I see a dermatologist every 6 months and last time the skin was 'healthy'. I daresay if/when things worsen I will be demanding more investigations and I intend to ask why I have not been tested for thyroid malfunction next time I see the dermatologist. It does feel as though not enough research is being done into this ghastly disease and yes, that we have to be our own investigators and healers.

    • Posted

      sarb, thyroid TSH levels are probably part of the annual blood panels that your GP orders, but you have to push for the antibody test. I told the NP I had done research, was aware that many women with LS had thyroid issues and that TSH levels weren't enough. She approved it and I now know I don't have a thyroid antibody issue. Now I'm left with the questions where the antibodies are coming from and why are they attacking the vulva. Probably unanswerable, but at least I know I don't need thyroid medication.

      I'm not sure if a dermatologist would order one, but it's worth asking.

    • Posted

      Beverly - tyank you for this info, I seem to remember reading about the antibody test for thyroid on here. I would ask my GP, not the derm. And the question of why our antibodies are attacking our vulvas is one we would all like answered I am sure. So frustrating for us all. We really need a detailed survey done because I am sure there must be an answer and some shared medical histories and incidents between us all. That knowledge wouldn't cure us though sadly.

    • Posted


      I am glad you are not suffering. I think docs won't order more tests when they see the patient is stable and they are overwhelmed with patients who have problems. I know I have thyroid antibodies which the literature suggests is dispostive for LS. At any rate, I'm glad you are getting some help. I am just about the point where the pain is so bad I will not be able to work much longer and fear I will be bedridden. Take care.

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