Recently Diagnosed with Lichen Planus
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Hello, first post here. I guess I just wanted somewhere to talk about my condition. Sorry if it is long, but i just wanted to give background. Everything started going down hill in June of this year. I started to get eczema on my hands and feet out of nowhere. Not severe, but it was very annoying. In July, I went to the Baseball Hall of Fame induction ceremony and ended up getting severe sunburn on my knees. A couple days later I was coming home at night and fell going up my stairs scraping my knee super bad (while still sunburned). I have always taken care of my cuts really well. The cut healed up and started to scab over. I accidently took some of the scab off and cleaned it, but the next day there was like a redish bubble that I popped and was filled with liquid. It healed now it's just a scar. (still itchy though)
Fast forward to September and I was starting a new job. Out of nowhere I started getting these reddish/purple bumps on my forearms, wrists, hands, knees and legs. I went to the doctor back in October and she took a skin biopsy and it came back as Lichen Planus. I also got allergy tested for seasonal and food and I only came back positive for dust mites. I also got a gluten blood test (which I think triggered this due to a diet change with very high preservative food and gluten) and that came back negative.
I have been gluten free for two weeks now and I haven't noticed anything different. I have been taken multiple creams that have not had any effect at all on my skin. A new eczema rash has popped up on both of my forearms which is very itchy. I go to a new dermatologist tomorrow and I am asking for more severe options regarding my skin.
I pretty much just wanted to ask what do you think triggered your Lichen Planus? Gluten, severe trauma to a body part, etc? Is there anything I should ask my dermatologist for that will help heal me faster? I can deal with my legs being messed up, but my forearms and hands are VERY embarrassing and I really don't like to go out in public anymore. Any advice or help would be greatly appreciated. Thank you!
0 likes, 10 replies
garbear TimMe
Posted
I believe stress is a big factor for me, also I was diagnosed with c-diff the sametime as the LP started showing up. I'm convinced the c-diff and my gut health has a lot to do with my breakouts. My Dr. put me on a regimen of 10mg prenisone for about 2 weeks which seemed to subside the lessons and the irritation. While on the prenisone I was out in the sun and got sun burned and I noticed that where I got burned the LP lessions disappeared and never came back as of today. I heard UV therpy is available for scaring but have not checked it out yet.
Changing my diet to a suger reduced diet has helped but I'm really bad at sticking to it. The more suger I ingest combined with stress makes my skin worse. My dermatologist prescribed me a steroidal foam to apply topically used as needed twice a day but extended use thins the skin and suppresses the immune system so I do a 2 week on- 1 week off rotation. I'm sure I have an over active immune system that is causing the LP. I have yet to speek to my family Dr. about testing of my immune to see if in fact is what'she happening. My dermatologist told me that the two layers of the skin epidermis are fighting to repair itself. I do believe this hold truth because every scratch, bruise or trauma leaves a red itchy spot shaped as that trauma. Which takes what seems forever to subside.
Also, I've noticed that I can not workout because I seem to stay sore for a week or more even with a lite workout. I read somewhere that this LP is an inflammatory disease which would make sense. Prior to being diagnosed I was having a hard time recovering from intense workouts. Everything seemed stiff and swellen to the point that I was taking Ibuprofen and iceing to keep the swelling at bay. Since then, I don't workout anymore and the soreness has stopped. Stretching and maybe some cardio is about all I can do but the stress on the body causes soreness.
TimMe garbear
Posted
Good4unurse35 TimMe
Posted
Prednisone does help and there are a few topical treatment creams/ointments too. I use clobetasol for the topical treatment and Tacrolimus for oral and have had steroids injected into the erosive lesions i get that won't go away...not much result there. I also had phototherapy to the mucous membrane lesions I get.i mentioned this in the other response to you. You will find that most thing are very individual and sort of hit or miss....there some isn't a lot of "proven" treatment as research just isn't there on the grand scale. The best thing is a dermatologist who is skilled with treating it. If you don't mind asking the borderline rude rude questions, in the nicest way possible, you will get farther....how many patients have you treated with LP, how successful would you say their treatment is, what are some of the things you do to treat recalcitrant LP....then take the answers and compare to research that is out there and see if he/she is in line with current ideas for treatment.
TimMe Good4unurse35
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Good4unurse35 TimMe
Posted
Ok, first of all never apologize for giving a full history. Secondly, Lichen Planus is believed to be autoimmune mediated disease. So no, I don't think any of the things you did, diet, fall, eczema etc., caused it,.. however the skin stuff may be related to each other. Lichen Planus doesn't "heal" per say...it does go into a sort of remission. You will get flare ups and periods where you may have no symptoms. The really depressing news is there aren't a lot of meds labeled for use with Lichen Planus. After you see your Derm, check back here and let me know if you still have questions. I will tell you forums like this are where you will get a lot of your "real life" info. Be care and always use your discretion as to what to believe and I would suggest running stuff by your doc if you aren't sure about any info you get.
TimMe Good4unurse35
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Good4unurse35 TimMe
Posted
Steroids can be be oral or injection. Oral is actually preferred. However there are a lot more side effects to the body than there are with phototherapy. I have done both. Phototherapy had mixed results for me, but I also have a bit different form of the disease than it sounds like you do. Also a dermatologist handles most aspects of treatment. Including biologics such as Humira or Otezla....I have even been on Rituxan... actually had great results with Rituxan, bit switched insurance companies(not by choice - disability Medicare) and they won't cover it because it is off label use....as are most things, since there is almost no meds researched enough and labeled for LP. My dermatologist did work with an oncologist for the Rituxan. If you have someone well versed in LP he/she should be able to handle most aspects of your treatment. Don't be afraid to ask just how many people they have treated with it and how successful they were....I know it seems rude, but remember this is your life and it can get very aggressive without proper care. Good luck
TimMe Good4unurse35
Posted
I just got back from the new derm. He decided to up the dose of prednisone to 60mg a day and wants me on it 10 days straight. I am going to see him next week so he can check up on it and see what he can do in terms of stronger medication if he doesn't like what he sees. I am still contemplating the rheumatologist within a month if this derm's treatment does not work.
Nanny_mo TimMe
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Good4unurse35 Nanny_mo
Posted