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painfulplanus (@painfulplanus)

Vaginal pain Lichen Planus

Autoimmune Diseases | Last Active: Jun 16 6:23pm | Replies (33)

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If my vaginal lichen planus does not improve (I was taken off the topical steroid I was using, Triamcinolone, as it began burning after almost 9 years
of use.) my doctor has suggested Plaqenil as a "cure". I'm hesitant to use it mainly because it can cause retinal eye damage in a small number of cases.
Before that step she wants me to take prednisone for a number of days to see if that can knock off the symptoms, and then
have me go back to Triamcinolone.
I would appreciate any comments, especially from anyone who has knowledge about plaquenil.

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Replies to "If my vaginal lichen planus does not improve (I was taken off the topical steroid I..."

Welcome to Connect, @sausalito. Here’s some information from Mayo Clinic, about Plaquenil: https://www.mayoclinic.org/drugs-supplements/hydroxychloroquine-oral-route/description/drg-20064216

I’m tagging @tarahbeth @kimdett @naomisantiago06 @tdani75 as they’ve written about Plaquenil in various discussions on Connect. I’d also like to invite @mariannj @dazlin @sharsharlee to this discussion, for their thoughts about Triamcinolone.

@sausalito, if the prednisone does help, would you still consider starting Plaquenil?

I just wanted to say that the steroids did nothing for my oral or vaginal issue. It had a major effect on my personality. I got very aggravated and anxious. I felt like I was bipolar. I can't take steroids unless it's a severe severe issue. It affects me mentally to the point of extreme emotional distress.
I am suffering more than ever, it's been over 3 years with both. Never getting better. I do think sugar is an issue but I just can't seem to get off the stuff!
I have major depressive disorder that's treatment resistance. Migraines and Fibromyalgia too. If anyone has the oral Lichen then you know eating/diet is extremely compacted.
This stuff can chase it self in a circle. Depression from pain? Poor diet or lack of exercise cause pain? Have a serious issue with your most private and important area of your body? Affecting you personal relationship or your ability to feel confident to seek out a relationship?
This disorder will put you through the ringer. Not to mention the discomfort.
Sorry sisters, sorry your going through this, I'm relieved I'm not alone. I can't talk about it with anyone I know. Its something no one wants to hear about. It's a body part for Goodness sake! It's an autoimmune disorder not a STD!
Bla bla bla, every one complains about their knee or back. I listen to them, right? Venting…
I just wanted to say I understand you all. Keep up the good fight 💪💜💐
(Funny you can add a photo below!! I got dx during the pandemic. I had to send photos to the dermatologist of my mouth and vagina. No in person visit during that time. I was waiting for a speculum to come in the mail!)