Lichen Sclerosis monster...help!

Beverly, Your comment about bacteria is interesting because if there is a chronic, say?, low level bacterial infection that could account for immune reaction, which for those of us with autoimmune tendency, would explain why it is attacking that location. Of course, same could be true of low level yeast. Then, once the viscious circle starts...boom...If you fail to treat completely, it would just cycle on and on until the tearing and scratching.

hmmm...food for thought.

For me, with both the protopic and the steroid, I am prone to yeast. Once my doc gave me a tube of nystatin and said to use it at the first hint of itch, all that has resolved. Also, as a result of my first UTI ever, followed in short order by my 2nd, my doc told me to soak once a week in a bath with Hibiclens. Seems to be working.

You use protopic and the steroid? Isn't that a lot of supression of your immune system? How long have you been on that regimen?

Re bacteria, I have read there are theories that bacteria is involved and maybe even viruses. Clearly it would take studies in order to ascertain, but is anyone conducting them? I doubt it. I think doctors are on their own and just wing it other than prescribing the steroids. I now mix nystatin with hormone cream as I feel it causes soreness which seems to be alleviated with the nystatin.

I'm surprised that you think it is unusual. On various pages, I find that, unless people use protopic because they can't use steroids, most use it in conjunction with steroids. In fact, my Doc discussed the possibility of mixing them. We finally decided on this approach. I have been having very good results. The reason that I am taking the protopic is because of the studies on it. I highlighted them to my Dermatologist, who then did her own searches on the literature. Studies are generally small, but promising. At this point, the studies on LS come from dedicated docs, not big pharma, which is, frankly, probably, good.

Actually, I've noticed mention of protopic on this board only recently. I see it isn't a steroid yet side effects sound as though it must enter the blood stream (stomach upset, cold or flu-like symptoms e.g., fever, chills, stuffy or runny nose, sneezing, sore throat, muscle aches). Or is that if it's taken orally? Also see it's given to dogs. Funny because flagyl worked for me for gyn infections and that is also given to dogs...and fish! I'm using the clob too frequently with unimpressive results. The disease just seems to creep along regardless of what I am applying. The same happened when I was using a milder steroid. Fine at first then the LS started spreading.

I have a GP appt in a month, but I have no idea if he would be willing to prescribe protopic. My gyn is no longer available and I am left winging it as none of the others in the group specialize in vulval skin disorders.

Beverly, those symptoms...and all the risks...are tied to oral or systemic ingestion. Tacrolimus/Protopic was developed to suppress the immune system for organ transplants. We obviously don't want to suppress the whole system.

It has also been used quite effectively with eczema...with problem areas disappearing. Although some have occasional, flares, that are treated and disappear for weeks, months, years.

For me (and I think this is typical) the symptoms were heat (some will call it burning, but for me it was like a heating pad)...this was only the first week. This was followed by itching...but I notice my areas where I still have reddish skin still itch, so I think the itching has something to do with the chemical and the cells...or the immune response still reacting.

I would be leery of using it if I had genital herpes or anything like that...might result in a flare of that.