Lichen sclerosis--Has anyone else been told they're in remission?

@ronag my flare ups are random and can occur any time, usually when I am stressed. Sometimes they last several days and sometimes just a day. Taro Clobetasol ointment has worked for me each time.

I only take when I need it. The skin there is thin and it may cause you to want to rub. Don’t. Just put the cream on. Gently. It does come and go for me. Best of luck to all of you.

@cher51 for me, the ointment works better than the cream.

It is ointment I use. I respond to people in a short period of time. So sorry. Thank you.😀

Even in remission you should use clobetasol twice a week for life to prevent structural changes. I learned the hard way. I have a completely hooded clitoris and reabsorbed inner labia. Most docs still don’t know how to manage lichen. Look to the LSSN community and Dr Jill Kraft to learn how to manage lichen.

About a year ago I was having horribly intense vaginal itching...I tried all the OTC creams and nothing helped. I couldn't get an appointment with my PCP but my medical group offered a nurse practitioner at another clinic. She prescribed a cortisone cream and said there was a stronger cream that might work better but she hesitated to prescribe it because it causes the skin to become thin. the cream didn't help and I finally could see my PCP who examined me and said he thought it was Lichen Planus. He prescribed Betamethisone cream and said this doesn't look like the typical lichen planus but maybe it was because I had been using the other cream. The Betamethisone did help within a week and within 3 weeks it had totally subsided. Some months later I had an itchy, tiny 'pimple' on the edge of my lower eyelid and another on the inside of my eyelid. I was able to see an associate of my PCP who prescribed an eye ointment and she said if it didn't clear up, I should see an Ophthalmologist. It slowly did clear up although both sites of those lesions are still red but are no longer raised or itchy. Within the past year, having been on a blood thinner and having sourced the generic of the drug, I started having minor but periodic itching on my lower legs. It was not constant and I wondered if the sun damage on my legs was progressing. I was using the generic blood thinner one week and using the remainder of my name brand pills alternatively. I spoke to one of the pharmacists at the generic company who assured me that the active ingredients of the generic was exactly the same as the name drug. He went on to say that if I thought I was having a reaction to the generic, it may be due to a difference in the binders or dyes used. In the weeks that followed, I had used up the name drug and began noticing red blotches and more intense and steady itching on my lower legs. I had to wait nearly 3 months to get in with a dermatologist and in the meantime, my PCP said if my legs itched, I could use an OTC cortisone cream.
I did that and had no more relief with that than I had with the coconut oil that I had started using to soothe and keep my skin from being too dry. I also searched the internet (again) to learn about drug reactions. I found one article that caught my attention when I read one of the reactions might be a " lichen-like rash" ! It listed other reactions as well but didn't elaborate about any of them. I was a little skeptical because this rash wasn't all over my body, although I did have some on my forearms and one or two on my chest and one on each upper arm. My scalp had also been very itchy just in certain areas but I haven't tried to look to see if there are red blotches under my hair. I don't think I could hold a mirror and be able to part my hair well enough to see. The dermatologist prescribed more Betamethisone which I am using and it seems the redness is perhaps beginning to fade. I have learned that this can reoccur at random. I have learned that it likes to invade the mucus membranes (vaginal and eyes, throat, etc.) So having the dermatologist diagnose this as lichen as well has me frightened that this can attack me anywhere at anytime, no matter what I do.

Has anyone out there had similar experiences? Were any of you afflicted by this due to a medication reaction? Does lichen tend to attack in susceptible areas such as the tender mucosa or sun-damaged skin? Is there any hope for a permanent remedy? I am 82 years old and have never had skin problems...I didn't even have acne in my teens. I did have numerous colon surgeries a few years ago and wonder if my challenged innards might have anything to do with it. Is there any hope for a permanent cure/remission?

@blinken I applaud you for working with so many different doctors and not giving up! That takes gumption! Have you read through the earlier posts? I think some have mentioned preventive measures. Good luck to you!

@becsbuddy, thanks for your encouraging words. I worked as a lab tech.-medical assistant for 30 years so I am fortunate to have some background in how the medical system works. We need to be our own advocates these days in dealing with corporate medicine. Fortunately, I am in a small community where many of our doctors still treat us with personal care. The other side of the coin is that this small community is not near to major medical facilities and numerous specialists. I did read some of the previous contributors' posts and realize that I will need to test more tentative suspicion of a possible drug reaction myself. I intend to order the name brand drug this next time at much greater expense but if I find these itching welts subside, I will continue to use the name brand. Again, thank you.