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Lichen planus? Different from how it's usually described...
Have had this for going on three years, mostly on back, some spots on arms and legs and possibly lip, eyelid and scalp (don't know if it's all the same thing.) Biopsies have come back as "lichenoid inflammation" and derm told me that means lichen planus. But my spots don't seem to fit how LP is usually described: they are not itchy, they are in sun-shaded areas, they are not purple or dark-colored, they are sore to the touch, and recently a few have started bleeding when I've applied something topically. I have tried many topical meds without success (clobetasol, triamcinalone, hydrocortisone, tacrolimus all made the spots raw, betamethasone didn't but it didn't help, desonide does help with my lip but the spot keeps coming back) and four months of three-times-a-week light therapy did nothing (except give me a secondary rash toward the end.) I'm just not confident this is LP and I'm frustrated with the lack of progress. 🙁
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I can feel your pain.
I know what you are going through. There are 4 different types of Lichen and none of them are fun to have.
I have it on my head hair line, and mouth that never goes away. There are times it’s better.
Check your lotions. Are there any purfumes or coloring in them. Also, do you have allergies.
Hang in there. Hope they come up with something to help you.
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1 ReactionThanks so much for your kind reply! It really has been a frustrating and painful thing. I just left it alone for a month while I was traveling but it didn't change at all.
I have lots of sensitivities so I don't use anything with scents or perfumes or additives. I don't have allergies but I've had reactions to ibuprofen, CT contrast, lidocaine, sulfa drugs, and raloxifene (an osteoporosis med that caused hypocalcemia complete with seizures, pain and constant nausea.) I am mostly gluten and dairy free due to an autoinflammatory disease (sarcoidosis, which my derm swears is not the cause of my skin condition.)
For the past two or three years, I've been taking a small dose of gabapentin (100mg in the am, 200mg at night) for hot flashes & night sweats that have afflicted me for 20 years. I've read a couple of patient reports linking gabapentin to lichen planus so maybe? My biopsy results didn't show much for eosinophils but did say the LP could possibly be a drug reaction so I'm thinking the next step is to try eliminating the gabapentin and see what happens. Which of course means returning to sleepless nights and sweaty days, sigh. It's always something!
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2 ReactionsBe careful going off gabapentin. It is a level 1 drug That is what the pharmacy told me. It takes days to get off. I was on it for less than 3 weeks. First 3 days half dose then half again. The longer you have been on it the longer it takes to get off it.
I was on it for less than 3 weeks. Went to bed I’m fine. Woke up 2 hours later left legs in great pain and then it started swelling. Long store short ER doctors couldn’t figure out what was going on my test all negative. Sent me home 10 hours later. Gained 10 pounds. Saw my family doctor a few days later. He knew at once what was going on. First night half dose I didn’t sleep it took me 9 days to get off. A month later left leg still not normal.
Be careful.
A lichenoid drug reaction is possible. Good plan to wean off gabapentin and stay off a few months. Have you had the autoimmune blood work done?
Oh my gosh, this sounds terrible! How much gaba were you taking? Did they check for blood clots/DVTs in your leg?
Wow, I hope you get better soon and thanks for the warning!
Thanks for your reply! I've had the ANA panel twice, thyroid antibody testing, IgG, IgA, IgM tests, all normal, all within the past couple of years. Anything I'm missing?
I do have chronic idiopathic lymphopenia, which no one ever seems to think is a big deal.
It's odd that none of my derms (I've had four) has ever suggested going off the gabapentin. Eosinophils have been pretty low but then I'm one of those weird super-sensitive people who has reactions when other folks don't, like the Raloxifene giving me seizures even though my serum calcium was at the very bottom of the range ("it can't be hypocalcemia, you're still on the range!" one of my docs told me. Uh huh...)
I cut my nightly dose of gaba in half last night (so I took just 100mg instead of 200) and had a really rough night, lots of waking up and tossing and turning. I might try opening the capsules into water so I can taper down more slowly. Guess we'll see!
300 a day
ER did all negative and x rays