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Treatments for Lichen sclerosis besides steroids

Autoimmune Diseases | Last Active: Oct 19 5:47am | Replies (173)

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@bustrbrwn22

@becsbuddy Unfortunately my lichen planus has spread to the soles of my feet and palms of my hands. This is the first time I have been able to sit up in quite a while. This is in addition to my oral, eye, and skin LP. I am now on hydroxycloroquine and may be on cellsept soon. I started having seizures every night if I fell asleep for more than a minute, literally. Doctors, emergency rooms, etc have not been able to determine the cause. Last night I was able to sleep for almost 2 hours while still having major flares. My eyes are very painful but the LP appears to be in remission there after a high dose prednisone course that I thought I was dying going through. It was terrible. When these flares happen my vagina and anus also burn intensely although doctors say that I do not have LP there. It is a major effort to go to any doctor appointments and am practically wheel chair bound. Thank you for listening. I am not sure when I will be able to post again. I have used all the standard LP treatments clobetasol, swishes, etc. but the LP attacked my whole body and my dermatologist had not seen this type of manifestation before and was only diagnosed through a biopsy on my hands. It really sucks.

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Replies to "@becsbuddy Unfortunately my lichen planus has spread to the soles of my feet and palms of..."

@bustrbrwn22 Oh my goodness, bustrbrwn, I'm so very sorry you're going through such a nightmare of pain and suffering. If only I had a magic wand... my very best to you as you travel this awful journey. Laurie ❤

@bustrbrwn22 Have you thought of looking for a new doctor? This link might have some information for you.
https://rarediseases.info.nih.gov/guides/pages/25/how-to-find-a-disease-specialist
You need and deserve to find answers!