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average age when first diagnosed?

Posted , 9 users are following.

stellarose369
stellarose369

I realize that asking for age is a usual no-no, but we are all here because share the same disease. I was diagnosed with Lichen planus 2 years ago at age 58. It was a mild case mostly contained to my limbs. Without any specific treatment, it mostly resolved (with the exception of ugly brown skin staining) in about a year. Almost exactly 1 year to the day, it came back... with a vengeance. From the neck down, I am covered. My mouth is full of painful lesions. Finally was able to see a dermatologist and have been treated with clobetasol and now Tacrolimus w/o much improvement. Moving onto trying UV light therapy. Please share your history and would love to hear positive stories of clearing! Thank you, Terri

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  • melhell
    melhell stellarose369

    Posted

    I was diagnosed at 55.  I have periodic breakouts mainly on my limbs.  The oral lesions which occur more frequently than the skin lesions are the worst.  Clobestol works best on my skin. My dermatologist had suggested a round of Accutane when I was diagnosed.  Hope you get relief soon.
    • stellarose369
      stellarose369 melhell

      Posted

      Thank you for sharing your experience. Treatment with Accutane is a new one on me; after reading about clinical trials, it sounds promising. I am praying for relief with UV light therapy as the next step for me will be Methotrexate. So tired of applying cream & ointments... and the cost is just amazing. Wishing you healing as well.

  • jessica17189
    jessica17189 stellarose369

    Posted

    I was just recently diagnosed with oral lichen planus and I am 29. Still at a loss of words on how exactly I got this? But i always try to look at the bright side and think that it could be much worse. My mouth was really bad and painful at one point but once I started to watch what I was eating it has significantly cleared up. I do have a few tiny random itchy spots on my skin but not sure if that's a coincidence or lichen planus as well? Still very new to this and have no idea what skin lichen planus even looks like or what the symptoms are. Hope you heal soon. Very unfortunate that there is no real cure for this! 

    • stellarose369
      stellarose369 jessica17189

      Posted

      My dermatologist summed it up. "I can tell you what you have, but not how you got it" There is just so much not known about LP.... so frustrating. I love that we can share our experiences here. My skin disorder started with what looked like a few bug bites that turned into flat, purple, multi-sided raised lesions. I sure won't ever be seen in a bathing suit again. But I am with you; LP is no fun, but it's not going to kill us. 

  • di220352
    di220352 stellarose369

    Posted

    I am 65 and was diagnosed with widespread  lp in February this year after many treatments which caused serious unwanted side effects I decided to look at my medications and stopped the omeprazole which I found caused my lp.

    Now 10 months later it has just about gone but, has left me with scars

    • stellarose369
      stellarose369 di220352

      Posted

      Thank you for the information. Hmmmm.... I've been taking Omeprazole for a long time. Will speak with my physician and discuss stopping this medication. It's worth a try! I appreciate you sharing your experience; it gives me hope.

    • jane63952
      jane63952 di220352

      Posted

      I long suspected my lp was triggered when I started taking topirimate for migraines.  I have now weaned myself off this drug and the lp is gradually clearing up.  There is definitely a link.  My lp started the same week I started topirimate.
  • leanne60647
    leanne60647 stellarose369

    Posted

    40. I hit 40 and everything fell apart.
    • leanne60647
      leanne60647 stellarose369

      Posted

      I have VLP , some VLS and had OLP. I have found that vitamin D made a difference. I'm also using colifoam on the VLP. i was given clobetasol but found  colifoam MUCH better. I recently had a smear and barely felt it - a nice change from the previous pain

    • stellarose369
      stellarose369 leanne60647

      Posted

      thank you for sharing your story. It does seem that Vit D plays a big role in helping relieve LP. I am praying that UV light therapy works for me. Tanning bed for now until I can bask in natural sunlight. Be well and heal!
  • di220352
    di220352 stellarose369

    Posted

    Hi Stellarose

    I found out by googling my medications and found the omeprazole / proton pump inhibitors can cause Lichen Planus so I took it upon myself to stop them, lo and behold the itching stopped as did the increase in lesions, 4 months later my arms back and chest are totally cleared, I still have the purple scars on my legs and they are slowly fading. I mentioned this to my doctor and she agreed that proton pump inhibitors could cause LP and as they say the “proof is in the pudding” so definitely worth a try.

    Good Luck

    • stellarose369
      stellarose369 di220352

      Posted

      My doctor has tinkered with my beta blocker and SSRI, but didn't consider proton pump inhibitors. So sorry that I just took my omeprazole before reading email. Thank you again for sharing!

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