Tacrolimus/protopic

I saw my dermatologist last week. She said I had a slight flare up (where I was feeling the "buzzing" in the vaginal opening, but otherwise looked really good with minimal fusion. I am to continue the Tac 2x/day, use the clob only in flare up areas for a short time, and see her again in 3 months. It is my understanding that this will be the protocol for the rest of my life. I used the clob for a few days and am now back on the Tac only. No more buzzing.

Another dermatologist with another version of treatment for the same problem. You are told only to use the steroid for flares and mine said to use it every weekend...forever. This does concern me. Mine also said it will be a lifetime protocol, not a temporary dosage.

Where did you find the video? Can you post a link?

jj are you suggesting that steroid causes atrophy?

Yes, of course they do. But in this case the cure (steroids) is better than the disease which also causes atrophy.

jj - I think steroids thin the skin but don't cause 'atrophy'. And yes, it is well worth using it to control this disease and to slow fusing of parts. The benefits outweigh the side effects. But as I understand it, atrophy is a wasting away of tissue especially as a result of cell degeneration , or (in the case of muscles) through under-use. Atrophy in post menopausal women happens because of lack of oestrogen and I suspect LS contributes as well.

Hi Karen,

For me, it was either this, or PRP/Mona Lisa laser. I have two gyn doctors, and they both ran out of options. I stopped responding to Clobetasol a few years back, got bad pelvic pain with the estrogen cream I used for slight atrophy, and I finally saw a dermatologist, who prescribed Tacrolimus. So far, the side effects were heat and itch the first day. It was a little bit overwhelming, but the second day, it all cleared. No itch, the skin is starting to look and feel healthier after a week, and I need to apply it for another 5 weeks. I can definitely see there is way less inflammation in it, and the texture and color are changing. I had forgotten how normal skin looked like. I also had the occasional dryness this past week, so I had to apply moisturizers the first few days. Will be updating this link as the treatment progresses.

Vita, I also have been using the Tac, but I'm questioning if I have been applying it correctly. I have been using it the way I was told to apply the steroid which is only where I could see white skin.

I called the derm's office today but all the assistant knew to say was "the affected area". I finally got a callback from the nurse...over an hour after I told them I wouldn't be available. Will try again.

It will be a month this Friday that I've been using it. Nothing feels or looks any different, so I'm suspecting I haven't applied enough. However, none of my symptoms have been extreme. Guess I'll hear what the dermatologist has to say on Friday when I see her.

Were you told to apply it to just the LS affected areas or to the whole vulva?

Beverly, the dermatologist told me to apply to the vulva. I apply the ointment to the entire vulva and the opening of the vagina. I squirt a tiny amount and apply it to the entire left lip area of the vulva, another squirt to the right one, and a tinier squirt to the vaginal opening area and even further down the perineum towards the anus. I think anything that looks dry, shiny, pale, white, or inflamed needs the ointment. My symptoms are itch, redness when inflamed, dryness, shiny pale skin, sticky skin between the lips, tightness of the vagina opening. I am peri-menopausal, but my vulva looks menopausal according to a couple of doctors. The color improved to normal deep red, the texture of the skin got more youthful, the lips plumped up, the wrinkly, sticky skin between the lips is improving. A couple of times the vulva felt uncomfortable after the Tac when I wore tight underwear or very warm winter pants. I had instructions not to put bandages, etc on the treated area, which is what tight clothes are akin to. With Tac, you need to have loose clothes waist down.

Thanks for the info, Vita. Are you to use it for a limited amount of time or is it open ended?

I had used clob a lot over several months due to my only symptom which is a buzzing feeling. It finally stopped and I stopped using the steroid, but I believe it caused some extreme redness. Just days later an opening came up at the dermatologist's. She prescribed the Tac but the only discussion was if insurance would cover it, the cost and having it compounded if need be. No detail about how to apply it. When I was finally able to get it I called the office as the container said twice a day, but also to use "as directed". I was simply told twice a day. I assumed I should put it where I had been feeling the buzzing and the whitish edges as I had the steroid, so it sounds as if I haven't applied it properly.

Haven't worn tight pants in a long time.

I need to apply it for 6 weeks. Then I go to see the dermatologist again. Based on all the pubmed-published studies of Tac, it is used either 6 weeks, 2 x day, or 3 months 1 x day. Most of the patients in the studies had a long-term recovery.

LS is for sure an autoimmune disorder, there was a study on what parts of the immune system get disordered with LS. I am wondering why symptoms are so different. I did have milder symptoms early on in the disease. I remember the first thing was miniature cuts during sex, and then there was the bright-colored redness all over the vagina that my then gynecologist was puzzled about. As the skin deteriorated (I was also anemic, and iron is pivotal for so many physiological processes), my symptoms got worse, and full blown LS settled in. I also had an episode of an aching, enlarged clitoris. I wonder if buzzing (is that a tiny itch that never stops?) is the immune system dealing blows to the neurons rather than the dermal cells. I still think it all starts with some critter. The gyn go-to lab test checks for only certain ones (I checked), but there could be something else that manipulates the immune system to get the neutrophils and some other parts of the immune system chronically up. It could be plain old Candida that does it, a protist, or a virus, although it is not the HPV virus, there was a study checking that. This is why I first did the antibiotic+antifungal treatment vaginally, just in case, before the Tac. Tac will not dispose of infectious agents, it will only heal the skin, and hopefully retrain the immune system to lay off those poor parts.

Apparently, I am on the 6 week Tac protocol. Got no response to the message left at the derm's office last night re application, called them today, transferred to the nurse who seemed uncomfortable answering, finally connected to the dr. I was not applying it correctly; should have been applying it to the vulva, (which I have been doing for 3 days now) not just areas where LS was obvious. Not sure if I'm being overly optimistic but the red areas look less extreme.

This Friday I will actually be seeing the derm (4 wk point).

Re the buzzing, it isn't a mild itch. It's closest to a pins & needles sensation of the clitoral hood primarily. I don't always feel it, but always do after applying the Tac. I agree our symptoms do vary. So far I have been spared any extreme ones and am trying to be proactive in controlling the disease.

I do not have a history of yeast, but I do have one of a non-specific infection that was treated successfully with Flagyl.

If I don't have success with the Tac I will continue my quest to find an MD who treats LS with PRP injections (not a simple thing).

You may not be that advanced in LS yet. Flagyl was the other medicaton (in addition to Polygynax) recommended to me by the European pharmacist based on what she sees gynecologists prescribe there. It kills parasites and bacteria. Some fungus can only be cured with antibiotics, and they also form spores when conditions get rough, like when antibiotics are killing them, so sometimes it takes a few courses. I have heard of ozone pills vaginally helping a lot with itch and fungal infections, but haven't tried them personally. I think the Tac will help with your immune reaction. It's what it does.

Vita, I saw the derm today. She thinks the Tac is working and that I am to continue using it 5x a week...forever. (Plus steroid on weekends). I was very surprised to hear this. Seems like a lot of medication. Her response was that people with AI diseases are on medications for the rest of their lives.

I had trouble getting my insurance co to cover the Tac initially, because they said it was not approved for LS. The dr had to send them a med article on its effectiveness. I wonder how many studies have been done using Tac for LS and if drs are just guessing at the amount we should be using to control the disease.

Re applying it to the entire vulva rather than just where there are signs of disease, she said the disease goes deeper into the skin cells and not always visible. She also said the steroid was to be applied the same way. The gyn who diagnosed me had me using the steroid just on areas with visible LS. As my gyn has not opened her own practice as expected I can't discuss this with her.

Beverly - sounds like the Tac will be good for you and that your derm is knowledgable. That's good. Also interesting to hear that steroid should be applied everywhere. I have slackened off from doing that as clitoral hood looks so thin now.

Bev,

Glad to hear that your skin is looking good. That's fantastic.

I agree with you that the dosage seems to be a bit of a guessing game. I'm at 1x a day, 4 days a week (with steroid at 2 days a week). I am to try to drop the tac to 3 days a week soon.

sarb, I truly have no idea if the Tac is the right direction, but as I have no other I will continue to use it. It does concern me that one derm would prescribe it twice a day five days a week and another derm would go with far less. My LS is not severe and I am trying desperately to keep it from becoming so, but I also don't want to over treat with something that hasn't been used extensively for this problem.

Have you considered PRP treatment?

Snap, when you say you are trying to drop the amount you are using is this at the derm's recommendation? Do you also use hormone cream? I do and it all seems a bit too much, although I am dropping back on the amount of the hormone as outer labia are too swollen. I mentioned this to the derm (should think she would have noticed and commented on it) and she simply said it would be fine and she could prescribe more if I needed any. I am no longer seeing a gyn and would like to in order to have more than one opinion, but I only want to see one with LS knowledge.

Beverly - dosages do seem a bit random from each derm for sure but might that be because each case is so different?

My LS is not severe at the moment either so I am content to continue the regime I am following. I think PRP a little drastic for me for now, but intend to ask derm about Tac when I see her again.

Bev & Sarb -

1. I agree...I don't think there is any consensus on dosage. They're basing it on the few studies and their own experience with using it for other issues. The derm who prescribed for me, read the articles, and then sat with us and discussed pros and cons. Settled on 4 days a week, 1xa day.
2. She also waited until all flares were gone...then started.
3. New derm (Long story, irrelevant, except I loved Derm 1) says all looks so good, we need to find the right maintenance dose. We drop until we see a symptom, then bounce up a level. I think what she'd love is once a week on both tac & steroid, but we'll see.
4. No...I don't use any sort of hormone cream...only tac and steroid.

My missing gyn took that more conservative approach, particularly with steroids. I feel more comfortable with that but this derm seems to be full steam ahead. She is very young which also concerns me. Reverse ageism?

I may end up cutting back to once a day because the feeling after application isn't particularly pleasant. Not bad, but not good either.

I have no drastic LS symptoms and never had. Just buzzing and shrinkage. There may have been some minor skin splitting before I even knew what I had, but they were resolved almost immediately with the hormone cream and steroid.

PS

I don't mind trying something new or experimental, but if I do I would want to be seen by the doc more frequently. Won't see her again till June (I will be away till then).

From the NCBI Pub Med,

Abstract on off-label uses of the drug tacrolimus, topical:

The topical calcineurin antagonist tacrolimus plays an important role in the treatment of different forms of eczema because of its favorable risk profile. In addition, different off-label indications have been clinically tested where tacrolimus ointment has achieved clinical improvement. This article discusses off-label treatment of vitiligo, seborrheic dermatitis, steroid rosacea, perioral dermatitis, rosacea and lichen sclerosus

digital object identifier-10.1007/s00105-013-2594-1