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Oral Lichen Planus (OLP)

Posted , 8 users are following.

MarieHorn
MarieHorn

Five years ago, I was diagnosed from a biopsy with oral lichen planus. I also was diagnosed with Rhuematoid Arthritis two years later.  I tried almost everything there is for my gums and nothing works.  Would like to see if anyone is having luck with something I haven't tried.  And does anyone else have an auto immune problem in addition to the OLP?  

1 like, 18 replies

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  • carolyn81368
    carolyn81368 MarieHorn

    Posted

    I'm afraid these autoimmune conditions like to reside in community, especially in one person's body. I have Epstein-Barr, psoriasis, OLP, and osteoarthritis. I have tried  meds and natural remedies with little long-term success. The best I can do is eat a clean diet, and take probiotics and a multivitamin. I take regular epsom salts baths and get a massage once a month. I also take regular Melt classes which help a lot. Water classes are good too. Just staying relatively stress-free and moving my body in ways that are easy on it seems to keep things level. Things don't get significantly better, but by living this way, they also don't get worse.

    For oral OLP I brush my teeth with baking soda or Dr. Bonner's toothpaste (NOT mint-flavored ... too hard on the mouth), using a soft brush. Of course I stay away from tart foods and things like crackers, chips, and raw veggies, as they tend to be abrasive to the mucous membranes in the mouth. 

     I wish so much that autoimmune conditions got the attention they need! 

    • karen41728
      karen41728 carolyn81368

      Posted

      Hi Carolyn have you ever had abnormal cells after a cervical smear test X
    • MarieHorn
      MarieHorn carolyn81368

      Posted

      Was given Meloxicam (Mobic) for my Rhuematoid Arthritis but didn't work.  Haven't gone back to the Rheumatologist, seemed he lacked compassion.  I was in and out.  It is really hard to find good doctors these days who really care about you.  And for now, I take a multi vitamin as well.  I do use baking soda twice a week to brush.  I also use Plax dental rinse.  It doesn't bother the gums, I am surprised.

      I too wish autoimmune conditions got more attention.  It seems to be on the back burner.

       

    • julia96551
      julia96551 MarieHorn

      Posted

      I was on that, but have stopped all NSAIDS (meloxicam is in the same class as ibupropen and naproxen) as they have been implicated in th development of LP and OLP.  Plus, I didn't find it any better than OTC ibupropen, except that you only had to take one a day.  But, then if you started hurting about 12 - 18 hours in, you could not take more like ibupropen.
  • penny33699
    penny33699 MarieHorn

    Posted

    Hi Marie,

    Sorry to hear this.  I was diagnosed with MS in 2012 and with LP in the oesophagus last year.  I wonder whether both can be traced back to Epstein-Barr virus.  Don't know if that is implicated in rheumatoid arthritis.  What I do know is that I've done a lot of research into autoimmune conditions generally and it is pretty clear that they are caused by different components - genetics, environment and lifestyle.  I follow the OMS programme (Overcoming Multiple Sclerosis) and that is about eating a plant-based diet plus fish, plenty of Omega 3 - flax mainly, supplementing with Vitamin D3, exercise and meditation to reduce stress.  I am doing very well on this diet with no relapses so far.  I also try to avoid as many chemicals as I can in my home - paint, clothing, furniture, carpets etc.  It's impossible to avoid viruses and to change your genetic make-up but there is a lot you can do about the rest of it.

    I've recently read about purslane for OLP and have managed to find a supplement which I'm taking through the winter.  I'll start growing and eating it in the spring :-)

  • kristyk
    kristyk MarieHorn

    Posted

    Hi Marie, My name is Kristyk and I have Raynauds, Lupus and Sjogrens Disease. I also have Fibromialgia. I had a bad case of OLP about 10-12 yrs. ago. It was very bad and lasted a year. I thought it was gone because I've had not had any problems until a a week ago. I lost my teeth from Sjogrens causing so much decay and dryness. I have mini implants on bottom teeth that a denture snaps onto. That denture has broken recently and can't afford th 2200 to replace. One of the bottom implants may have to be removed unless the LP calms down. Darn our immune systems anyway. I can't walk around with nails sticking out of my mouth. I just keep faith. I take one day at a time. I also try to b positive and not cry but sometimes easier said than done. Hang in there and God bless you.

    Kristyk

    • MarieHorn
      MarieHorn kristyk

      Posted

      I'm so sorry Kristyk.  That's so much all at once for someone to go through.  I will  be praying for you that god will bless you with the money to have your denture fixed and will pray that someone comes up with a cure for all this.  God bless you too!   
    • kristyk
      kristyk MarieHorn

      Posted

      Marie, Thank you for your message. It helps to have someone understand what you are struggling with. I too hope someone finds a cure for the LP. And autoimmune diseases. If someone helps with one autoimmune illness I believe it will help the many that so many people deal with daily. Thank you for your prayers and support it means so much. God bless you!

      Kristyk

  • julia96551
    julia96551 MarieHorn

    Posted

    Hi,

    I have had cutaneous LP of the nails, and sometimes hair and skin for most of my life.  Developed oral erosive LP 2 years ago.  Also Raynauds and inflammatory OA since my 20s (now in 60s).  Also autoimmune pregnancy loss.

    Only thing that stopped oral LP was prednisone, but got steriod induced cataracts, so now off of that (placquinel did not help, so I stopped taking that due to eye risk).  Still use oral steroid dexamethasone mouthwash, but it does not abate, just makes more tolerable.  May be developing Sjogrens (have dry eye and sinus problems) but have not tested positive for autoantibodies yet.

    Just had endoscopy this week for esophogus problems.  Don't know results of biopsy yet.

    At one point doctor was considering azithioprine, but my liver numbers were up from all the pred, so he went with pred and placquinel.  Now my liver numbers are normal again, but I'm not sure the side effects are worth it, unless it gave me a long term remission.  I just wish it would go away at some point.

    • MarieHorn
      MarieHorn julia96551

      Posted

      I'm so sorry to hear all you are going through.  Seems like when an auto immune disorder attacks, more come with it.  I am going to get tested again for other things, I hear that they can come out later in life, they go hand in hand.  I tried sterioids too, but can't take it long term.  Glaucoma runs in my family.  I tried the mouthwash, didn't help.  I am now oil pulling with coconut oil.  Not a miracle but does help alittle.  I wish it would all go away too.
    • karen41728
      karen41728 julia96551

      Posted

      Hi everyone

      I noticed I developed LP around the same time I had treatment for abnormal cells after a smear test these are connected I have oral LP too, anyone else had problems with smear test Xx

    • julia96551
      julia96551 MarieHorn

      Posted

      I have pigmentary glaucoma (a type very nearsighted people get) and my mom had classic open angle, so another reason to avoid steroids, but after cataract surgery my pressure dropped from 24 to 17.  Eye doc said that is one of the "nice" side effects of cataract surgery (the other is that I can see the computer and drive without glasses -- I see better than I have since I was 9 years old. 
  • kathryn07219
    kathryn07219 MarieHorn

    Posted

    Hi Marie

    My auto-immune problems started 25 years ago when I took Nivaquine as an anti-malarial on a holiday in Kenya.  One of the "rare" side effects of Nivaquine is loss of skin pigmentation - later diagnosed as vitiligo.  Now have LS in various areas of the body and LP of the nails.  I think auto-immune disorders have a nasty habit of inviting their friends to stay!

    • AnnieWilhemina
      AnnieWilhemina kathryn07219

      Posted

      Hi Kathryn when I was diagnosed earlier this year I was asked if I had ever had malaria which I haven't but I was given

      malaria pills to help with cramp due to hardening arteries in my legs. I've also have raised vitamin B12 & Folic levels which have been checked out liver seemed fine but they did discover a small problem with my gall bladder. I'm back for a 2nd

      round of blood tests in the next couple of weeks so we'll see

      what going on now honestly if I couldn't laugh'd I cry 😕

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