Immunomodulators

PROTOPIC (tacrolimus)

ELIDEL (pimecrolimus)

This is another form of medication (ointment or cream) similar acting to the steroids to help stop ‘symptoms’ but would most likely replace steroid use, although some physicians may use them together, varying them.

It is somewhat expensive and is usually recommended by a dermatologist. Though some gynecologists ‘are’ catching on a bit and recent legitimate studies show using it ‘off label’ to benefit LS, LP, (lichen planus) Vitiligo and other idiopathic vulvar pain if it is in the vulvar skin itself.

The Protopic or the Elidel have the biggest advantage of NOT damaging or thinning the tissue or skin as a steroid may with ‘overuse’, and works on halting the histamine and other cytokine inflammatories output from the degranulation of Mast cells ‘before’ they come out as they are immune system modulators. Anti-histamines or steroids work ‘after’ they’re out and have already started causing tissue damage and hopefully those can revert the symptoms. It’s the histamine output from Mast cells and others (TNF, basophils, Sub. P. etc. etc. called cytokines) produced by the body which are inflammatories, that are contributory and causes that skin to react with itch, inflammation, burning, stinging, etc. (Also the same thing for example in a person with hives.) And we want to halt that ASAP since inflammation and itch can damage the tissue fairly fast and that is what a steroid is supposed to halt and put into remission. We definitely want to stop that ‘itch/scratch cycle’ as it causes much damage to the tissue. If it continues for length of time (possibly years) it may have the potential to turn cancerous as well.

Protopic or Elidel (very similar products are not specifically approved for LS or vaginal pain, and are approved for psoriasis/eczema, but many physicians or dermatologists are today using it ‘off label’ for vulvar problems and it is working with some patients quite well as our excellent poll showed.

UPDATE:¬† Many newer legitimate medical reports tell us of studies with LS, LP, Vulvodynia, and Vitiligo and how Protopic or Elidel usage show it has been proven to work as well if not better than the steroids in ‘some’ cases. (We knew that!) *smile* And some of those studies are listed at the Home page of our Lichen Sclerosis Group.

The LS group and the Vulvar Disorders group were the first to use Protopic as a group; we were the guinea pigs so to speak. I’d followed Protopic from it’s inception long before it was ever approved for those with psoriasis and only a dream, hoping that it would be an answer for those who have Vulvar pain, since they too have to use the steroids as eczema & psoriasis patients do, and it has been a godsend for some members who swear by it.

The Protopic or Elidel may severely irritate with initial applications with ‘some’ patients, so be forewarned, and that is mentioned on the insert, (a few members had to go to the emergency room with the pain.) And ‘not’ to frighten you, but if you can stick it out and endure it for those first few days, it has been very beneficial for some members when nothing else has helped. Others simply could not use it at all and others had ‘no’ problems and loved it and it worked miracles for them; hopefully you’re one of those. If you do try it, use it on a very small tiny spot initially perhaps even with a Q-tip to see how ‘you’ react. Some members rejected the Protopic at first, but when re-trying it at a later time, it worked.

Also it’s suggested in the literature if one ‘already’ has Herpes, or Shingles or any type of ‘viral’ infection like HPV, that it ‘may’ bring an outbreak on. (Just as a steroid may, by the way.) Because steroids and the Protopic or ‘Elidel ‘are’ immune inhibitors and thus may weaken the immune system to ‘let out’ other diseases so to speak that were previously dormant and held in check, especially things such as Herpes, Measles, Shingles, Chicken Pox or HPV which are all viruses. That is why you’d definitely want to rule out a Herpes infection, since using a steroid may make you much worse.

Just remember that a steroid ointment generally suggested for LS, the ‘first’ suggested protocol for LS in most cases and a weaker one for initial Vulvodynia, but a steroid as well as Protopic or Elidel, ‘may’ also increase a Herpes outbreak as well or any type of a viral infection, (HPV) though not often mentioned in the literature. I have seen it reported for steroids too, not only in evidence based literature but also anecdotally with members.

One other quick note about steroids is that ‘overuse’ can also be systemic if used ‘long’ term with side effects such as Cushing’s syndrome. It’s not likely, but can happen and is mentioned in the literature and it did happen to me.

UPDATE: ¬†Just recently the AMA has suggested that physicians always use a steroid as the first treatment before suggesting the Immunomodulators and then only if a steroid doesn’t work. And there have been some recent reports of Protopic or Elidel as being a possible or suspected trigger for cancer, though I’ve read every single report and to ‘me’… Most seem to me to be extreme cases where it was so much overused (whole body as for psoriasis) and not at all like the pea size amt. Some cases blamed it on the immunomodulators when it was used for barely for a week or two so was it that or not? Who knows?

Plus we all have to remember that the Protopic or Elidel (and even the steroids to a degree) slow down the immune system and that leaves it weaker to fend off other conditions or illnesses that may have previously been there all along. I myself wouldn’t think so using the very small amount we would, but that is completely up to you of course, and your physician’s feelings about it. We just know it’s helped many when nothing else has, but of course leave that totally up to you and your physician.