Newly diagnosed with lichen planus, looking for any and all advice
January 29, 2015 12:51 PM   Subscribe

Yesterday I got the official diagnosis, and unfortunately I have it everywhere. If you're living with this autoimmune disease, what have you done that helped? What causes flare-upS? Did you have adverse reactions to medications, and did you find that certain things helped more than others? Most of what I've found online are basic fact sheets, so I'm hoping to get more personal information.

Additional info:

I've just started a Prednisone regime that's starting at 30mg (5 pills a day for a week, then 4, etc.) I will be picking up Lidex later today to be used on specific problem spots as needed, and I also have Nystatin that I'm supposed to "swish and spit" 3x/ day.*

The doc gave me a short list of foods to avoid: strawberries, tomatoes, chocolate, kiwi, pineapple, peanuts, walnuts, cinnamon and also toothpaste w/SLS. Most of these I'd figured out the hard way and luckily aren't really a big part of my daily food life.

My current state is that most of the skin plaques (mostly on my back) have run their course and are now scars that are definitely starting to fade (yay) but it is active and extremely painful in the other areas. I have another appointment in three weeks to assess my progress.

*The doctor said this was to help reduce the pain and tenderness of the ulcers so I can eat normally (soon, I hope) and not because of fungus.

Anon because I'm not ready to own this publicly yet. Throwaway email:

(I've searched here but most of what I've found are people suggesting lichen planus as answers to "mystery skin problem" questions and this one is seven years old.)

posted by anonymous to Health & Fitness (5 answers total) 1 user marked this as a favorite
I had a little of this in 2007, as confirmed by a dermatologist. She said the cause is unknown, but anecdotally I can tell you that it happened at a very low point in my life, after a parent died and my first marriage fell apart. As my life got happier and more normal, the lichen planus went away.
Are you unusually stressed or unhappy right now?
posted by w0mbat at 2:50 PM on January 29, 2015

my SO was diagnosed with lichen planus 4 years ago.
In his case flare ups happen during periods of high heat, humidity and long working hours. When he works more than 10 hours/day in heat/humidity medications can't fight the break outs.

SO's been through many topical medications. One thing I'd suggest: keep a log of prescribed medications. We found the medication he was originally prescribed worked well but he'd gotten it from a physician when working out of state. After going through several dermatologists and 2 local podiatrists (SO's breakouts occur down to the top of his feet) We still haven't been able to get the original medication. Frankly at the time we thought SO was cured so we weren't overly concerned. [fwiw: tiny tube, later left in a hotel room, prescribed by a doc-in-the-box at a location that's now closed. aggh.]

The breakouts take months to heal and often reoccur in areas previously affected. Now I dab cream on those areas (which gradually fade yet are discolored now years later) every other day. This may or may not help fight recurrence but we're so snakebit (we've gone to traiteurs and gotten topical treatments in the Yucatan) we're always with the thought SOMETHING somewhere might fight recurrence.
Anytime we're in an area of high heat/humidity we seek local solutions.

The dermatological creams (which I could list for you via memail if you wish) have varied from $500 to $65 a tube usually work on the inflammation--eventually taking care of the burning/itching and beating back the bumps with marginal success.

Another note: SO had 23+me run a genetic report.
SO has a SNP known as rs2076295 which encodes the protein desmoplakin (part of desmosome)--connecting adjacent epithelial cells of the skin doesn't run so smoothly. secondary bacterial or fungal infections are common. in addition SO has several gene variants linked to increased autoimmune disorder.
Discussing genetic reports with local physicians has been a non-starter. fwiw Physicians want to treat the burning/bumps and move on. We've looked into it further since the lichen plantus isn't moving on.

Thankfully SO isn't orally affected. Wishing you the best in this struggle.
posted by Twist at 3:03 PM on January 29, 2015 [1 favorite]

I don't have specifics for you on your condition, but I do have Crohn's and have dealt with 20+ years of the insane therapies modern science throws at autoimmunity.

Mainly I wanted to chime in in case you haven't been on prednisone before: for some people (myself included), I was not brought up to speed on its possible range of side-effects and I suffered for it. For lack of a better way of putting this, it may make you feel crazy, and you should not hesitate to talk to your doctor if any particular set of symptoms comes up that makes you uncomfortable. You may have other options in the way of immunosuppressives.

Ditto keeping a food diary. That's the approach that was the single most effective tactic in guiding my creation of a lifestyle that feels at once humane, a bit flexible, and not dependent on drugs that I do not wish to be on long term.

I'm so sorry you're unwell, but I am glad you've found a diagnosis and have begun working on a therapeutic resolution.
posted by late afternoon dreaming hotel at 3:47 PM on January 29, 2015

If you're on Prednisone, it will make you hungry and craving carb/sugars. BE AWARE! I had an injection of steroids on Halloween, and I ate all the candy. Then I had a gall bladder attack.

So just keep telling yourself that you're not really all THAT hungry and stick to fruits and veggies when you're feeling nomish.

Good luck. Feel better soon!
posted by Ruthless Bunny at 4:10 PM on January 29, 2015

I had a year-long bout of lichen planus that started during a period of extremely high stress. I think I read everything there is on the internet about it, not that there's very much.

Until I could get in to see a dermatologist (which took about eight months), my doctor and I thought it was an allergic reaction and I tried changing soaps and my diet and so on and nothing seemed to make any difference.

This article gave me some hope that it could be controlled by an (extreme) elimination diet, but my symptoms went away (on their own?) a couple of months after I got my biopsy results. Steroid creams were the only thing that helped me feel better temporarily. I thankfully didn't have any significant oral issues. I took Benadryl at night a lot of times to help me sleep & reduce itching.

It's been two years since then and I haven't had any flare-ups. I'm not sure if anything I'm doing is helping it stay way, but I keep close tabs on my stress level and mood now, try to eat better than I did before (low carb, fruit and vegetable smoothies, try not to skip meals) and get more physical activity (walking, stretching, mostly to keep stress away). I use a habit tracking app (the one I use is called Way of Life, but there are tons of them) to keep an eye on what I'm doing.

Oh, and my dermatologist said that I have some areas of vitiligo (skin whiteness) and alopecia areata (patchy beard), so I'm likely prone to autoimmune disorders in general -- lichen planus is just one of them. So you might want to search for autoimmune disorders/diseases rather than just lichen planus, because many of them appear to be related.

Sorry you're going through this. It's frustrating and miserable, I hope you feel better soon! Feel free to contact me if I can be any help.
posted by frenetic at 7:18 AM on January 30, 2015

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