21 years old and found out I have LP - spreading everywhere, need help!

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Hi everyone,

So I'm a college senior and while on summer vacation, I noticed what looked like a cluster of warts on my wrists and elbows - my arms perfectly mirrored eachother. Went abroad and it slowly started creeping over my legs, as just a single bump or a few at a time. Came back for school in the fall and it kept getting worse.. and one of my fingernails was purple and had a huge line down the middle, was frail and looked like it was going to come off. I immediatly got tested and the skin sample came back as LP. Of course they tell me "there's no cure, sorry" (well not exactly like that but thats what it felt like) and gave me steroid cream. I'm all about all-natural so I skipped the steroid creme after reading it sometimes made it worse for people.

I'm EXTREMELY healthy. Especially for my age. Oats, cottage cheese, fruit, veggies, eggs, salad, beans, almond milk, whole grain bread, rice and thats it really. I lift weights 5 times a week and am very fit. During the summer with my parents and my time abroad wasn't working out much and wasn't eating well, but I'm back to normal now.

4-5 months in now, its everywhere... everwhere except my mouth. Its especially bad on my legs, they used to be my favorite part of my body and now I'm feeling subconscious to walk around in shorts (and im from FL its 10000 degrees). My boyfriend of my whole college career just broke up with me and was totally indifferent tabout what I was going through (so I guess it's for the better.) 

I'm seeing a chinese doctor in the area that has me taking a ton of herbs, doing acupuncture once a week and rubbing my ears (not sure how I feel about that one) and it seemed like it was getting better for awhile, became purple and the skin became flatter, but then it got WORSE. All of a sudden my wrist had what looked like pimples.. I popped them and put activated charcoal on it, the next day it looked like a white mountain ridge. Popped it and it just oozed out like one giant sore and now I'll probably have a huge scar.

I have a sneaking suspicion I have a histamine intolerance as well and am trying to see if they are related. Noticed when I drink alcohol I have extreme sinus preasure in my head and a stuffed nose, renedered useless for an entire day. Recently found out I'm allergic to walnuts which make me so tired I fall asleep and just cut out nuts all together after reading they are high in histamine. Noticed I'm just really itchy all the time too, my ears, face, head, stomach, just for no reason - thinking its the high histamine foods, but it seems everything I eat has histamine. So I'm taking DOA supplements and Quercetin and Bromein to combat that. Thinking the histamine buildup in my body inflames the lichen planus as well.

Worst part is, my sister who is a freshman at the same school as me, is getting extremely itchy allover and has bumps similar to mine all over her hands....she's starting to panic.

Thinking its a gut problem as well as both our freshman years we were extermely sick and were loading up with nasal steroids and antibiotics among other over the counter medications. (taking a probiotic to help restore my gut).

I'm spending literally hundreds of dollars a week (with my scholarship money, meaning less money for food/living/etc) on supplements, becoming extremely insecure of my body that I was once very proud of as I work hard to be and look healthy, feeling less able to enjoy my senior year each day, and just feeling desperate. If anyone has any advice at all or could share similar personal experiences I would grately appreciate it <3 

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12 Replies

  • Posted

    Sorry about your struggle with LP. I have it on my palms, between my fingers, around my ankles, and on the soles of my feet. It's a nightmare. I'm 47, and not nearly as healthy as it sounds like you are. The o n l y thing that helps me is 5mg prednisone and a 5% topical steroid cream. If I didn't use those two things the itching would be unbearable. I used to scratch in my sleep. You're definitely not alone in your struggles, apparently there's more than a few of us out there. You'd think there'd be a cure found by now. 

    I hope things get better for you soon. 

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  • Posted

    Hi, 

    I used to be until fairly recently a competitive amateur cyclist. Unfortunately, being healthy doesn't prevent you from developing Lichen Planus :-P I would recommend in this instance that you follow your doctor's advice. The amount of steroid that you will absorb through your skin is less than if you were taking Prednisone tablets. Once you get it (Lichen Planus) under control hopefully with your doctor's guidance you will hopefully be able to discontinue the cream or significantly reduce it. Quit spending money on supplements...sounds like you are eating a healthy and well balanced diet. Have your doc check your vitamin D level and get patch tested for allergies to dental materials, fragrance, environmental allergies, etc. If you don't have one already, find a good Dermatologist. Also, look up #hospitalglam. Be proud of your wonderful body! You have nothing to be ashamed of :-D There is a wonderful group on Facebook for those with Oral Lichen Planus...but all are welcome and indeed many have cutaneous Lichenn Planus also. Hoping you feel better soon! Stay positive smile 

    Kind regards, 

    M.

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    • Posted

      competitie cycling, thats great! Yes, I've noticed being healthy doesn't prevent it, but I wish it did! My dermatologist said I was an unusual case and didn't know much about LP and basically couldnt do anything for me but give me the steroid cream. I'm just scared to use steroid creams because i've already taken so many medication and I believe that's where my problems began, and because i've read that its only worsens the symptoms for some people rolleyes I might ask my dad to help me out and possibly send me to a nutritionist.. defitintely have some weird allergies. My 100% organic shampoo is even giving me a rash now, out of nowhere! So hopefully he will be open to the idea, because I can't keep paying for this on my own. Thanks for the hashtag, really inspiring smile I'm keeping fairly positive just need to make more mental adjustments to keep up with my physical changes. 

      Thank you for the support <3

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  • Posted

    I am much older, so i am so sorry that this crap happened to you at 21.  Mine showed up about 6 months ago, in my mouth and genitals, and now I have something on my left leg - i hate to call it lichen planus, it is just one and it started a few weeks ago looking like a mosquito bite, bumpy and itchy.  It did not go away so I went to see my doctor who took a picture and sent it to dermatology.  Dermatology dept called and they want to see me.  I scheduled for Nov 2 since I am leaving for Europe till end of Oct.  something tells me that they are going to diagnose it as LP.  Like you, I always lead a very healthy life, working out etc..LP was a total surprise to me.  For me, the worst part is knowing that it will not go away, that now i amstuck with it forever.
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    • Posted

      Knowing I'll lead the rest of my life with it is definitely rough too rolleyes but at least we aren't alone! Don't assume until you get a skin sample, who knows it could be something else but good luck and have fun in Europe! <3
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  • Posted

    Okay FL Girl I have had LPP of the scalp and I think that my tipping point was too many live virus shots at one time which makes me think that your tipping point may have been when you were sick.  This is being seen more and more - the things I have found out - metabolic syndrome and inability to metabolize vitamin a for what reason - no one seems to know.  Stress which I am sure you have and eggs or any skin cremes that you are using with any kind of retinol a or anything that is on the label in some foreign language that is still vitamin a.  I have been taking milk thistle and an adrenal support which probably kept mine from getting any worse. Vitamin a - from animal protein or cremes is stored in the fat of your liver. The last four months I have cut way back on eggs and animal protein - which I do not eat much of anyway - and gotten rid of all of the vitamin a cremes.  Mine is greatly improved to the point that I have only occasional itching.  I would also try apple cider vinegar on your skin - maybe in your bath water - you can add an essential oil to cover up any odor but it has worked wonders with my scalp.  Good luck - I hope that maybe some of this may help!
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    • Posted

      I was SO healthy before I came to college. Never got sick, EVER. When I did, my body would fight it off pretty quickly. Right when I got here, I became sick all the time, took tons of antibiotics and other drugs, and my immune system went to crap. Now I get sick at the drop of a hat, have insane allergies to everything and have this lovely condition. So I'm betting my money it was on that. Glad I'm not the only one to think so! Interesting - I'll have to look up Vitamin A then. I do take a multi and eat fortified foods so I'll calculate how much I'm gettting on a daily basis. I'm not very itchy, I scratch lightly occasionally but I do use ACV on my face as a facial toner though lol. Thank you, it did!!
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  • Posted

    I think you need to see an allergist as soon as you can as that may help, and you might also want to consider keeping a food diary for a while.  I also thought I had a problem with histamine but it turns out I have a serious problem with Sulfites, (preservatives) in food, and a good test is to take a handful of dried fruit like raisins and see how you feel afterwards.  Unfortunately, sulfites are in a lot of foods, wine is loaded with them and is a very common trigger, and so this is why I suggested a food diary.  One other thing, DOA contains derivatives of pork, and pork contains natural sulfites, and so if sulfites are your problem taking this product could be making you worse, but as I said I think you need to see an allergist to hopefully help find out what is going on with you.
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    • Posted

      You're right, my dad is in town this weekend and I may just ask him. He has money but he's weird with it. I just can't keep paying for things just through doing my own research online. An allergist and nutritionist would be the best option rolleyes Wow, I didn't know that. I did see something recently online about sulfites and their connection with histamine but didn't really look into it. Well now I have two options of what it could be, definitely need to figure that out ASAP. Thank you so much!
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  • Posted

    Just letting everyone know I have seen INCREDIBLE improvements in just the past few weeks - the lichen planus is no longer itchy, red, or enflamed and continues to diminish each day! Im no longer afraid that my nail will fall off as it's stronger and returning to normal, and no longer having weird reactions to food! Thank god for eastern medicine smile 
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