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Erosive Oral Lichen Planus & other autoimmune conditions

Posted , 9 users are following.

trudy98661
trudy98661

Hi,

I have had OLP (erosive) for approx 2 yrs

in the past 2 yrs I have round out I also have autoimmune hypothyroidism (Hashimotos)

I find the oral lesions happen in conjunction to my flares, which makes sense being autoimmune in nature.

My question is to those with OLP, do you have any other autoimmune disorders ?

If so, what are they?

There are no real answers as to what else will pop up when you have an autoimmune disease, just band aids

(corticosteroid gel for the mouth, pills for the thyroid)

just trying to do my own research

thanks in advance

Trudy

0 likes, 20 replies

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  • rajkiwi
    rajkiwi trudy98661

    Posted

    Hi Trudy,

    Not been on here for a couple of years. Been busy managing my OLP and getting back to work.

    A year or two into my visibly OLP like conditions they were taken over by another auto immune condition called - Pemphigus. All my condition is limited to the oral cavity and perhaps the eosaphagus.

    Together they wrecked a riot in my mouth. easophagus and maybe a bit of watering of eyes at times. The docs in Melblourne were smart and recognised both. it was a mystery to them as Biopsy definitely confirmed OLP and another blood test confirmed the Pemphigus.

    Each different in how they attack tissue. One scars and the other is dangerous in the way it inflames the mucosa ( in my case). I had more than a few near death suffocation experiences as small pieces of food would get stuck inside my eosaphagus.

    With a good treatment plan and a very understanding set of doctors, I am much better. It took the doctors themselves to visibily the see one auto immune to get cured, before they could see the underlying OLP.

    I strongly feel Stress is a trigger for Auto immune. Keep stress out of life 😃

    • richard92537
      richard92537 rajkiwi

      Posted

      Hi Trudy

      I have OLP which started last November---the worst of it is lack of taste--a good steak has a metallic taste so I have to go to more spicy foods which of course irritates the OLP

      I have Ulcerative Colitis as well so it is a question of managing both.

      UC does drag you down and a good meal used to perk me up--but now can't do that any more as taste is impaired.

      Definitely stress related--my life has plenty of anxiety in it even for some everyday things and certainly depression could set in if I allowed it to.

      Any of this relate to you??

      Cheers

      Richard

    • anne13482
      anne13482 rajkiwi

      Posted

      Hi Rajkiwi,

      Wow you really have had more than your share! There is another lady on here who mentioned that she has had to be taught to stretch her own oesphagus - sounds like scaring tissue involved. I wonder if she has the same condition i.e. Pemphigus too.Never heard of it before and had to Google.

      Glad to hear you are managing to get back to work.

      I can't say that I have any stress myself. Lovely marriage (40 years coming up) and life is good. Looking forward to spending entire winter (4 months) in sunny Spain. Only thing stressing me is the erosive OLP. I cannot solid foods - only mushy meals from a very limited food list.

      Even that has to be washed down - usually with a cup of tea or water.Once or twice, even that wash a struggle to swallow but not having that prolem now. But I am grateful I only have the OLP!

      Wishing you a good recovery, Rajkiwi,

      Anne.

    • sandy58862
      sandy58862 rajkiwi

      Posted

      I will look up Pemphigus. How are you treating it & what are the symptoms?

    • rajkiwi
      rajkiwi sandy58862

      Posted

      I checked out the forum for Pemphigus in this platform and it classifies it as a fatal disease if not treated. Luckily for me with the treatment, I can do with a few more years on the chrono clock. It is a blistering condition as cells are ruptured by destroying a cell membrane protein. I had it only in the Oral cavity. If you have it, you will KNOW.

      The doctors in Melbourne gave me 2 or 3 infusion of Rituximab 500 I think. They then tested for a protein the blood called DSG1 and DSG2 (not very sure. I have it written down). They basically show the activity levels of this destructive cell damaging process. Over a year it showed that levels were 0 o r Nil which showed the success of the treatment. Sure enough the erosive OLP has now surfaced.

    • rajkiwi
      rajkiwi anne13482

      Posted

      Wow thats painful to have to swallow mushy foods and I though I was struggling through this. Its funny how doctors say don't stress a lot about the condition, when the condition is the genesis of stress.

      I think stress can cause it to come out of no where, however the whole truth will be in that some viruses could cause the body to respond in that specific manner or as others have mentioned a oral procedure like root canal.

      In my last meeting the docs mentioned I need to use a mouth wash called Curasept which does not stain the teeth. it contains cholohexidine. Should be available in the UK. I have very low gum line and can almost see my roots, so need to do all possible to save them.

      This time the docs also have sent a request for a gastroscope and biopsy of the easophagus as OLP can scan the tube. They have a spray medicine for that. The scarring of the tube can lead to a peristalsis to be improper I imagine. That would really make it hard to swallow foods.

    • sandy58862
      sandy58862 rajkiwi

      Posted

      Thank you for your thoughtful reply. Think I was stunned hearing the additional medical problems & forgot to look up on this forum.

    • trudy98661
      trudy98661 richard92537

      Posted

      hi richard,

      I certainly relate to missing the

      'joy of eating' . I have always enjoyed spicy (and crunchy) food . Now I eat strictly as a necessity- food has become a medicine. I no longer have much of an appetite, many foods cause my digestive system to react negatively, and of course everything seems to bother my OLP .It gets frustrating to have to stick to a bland, soft diet. My taste buds have definetly been effected....

      Oh to hunger for a delicious meal, dig in, enjoy the flavors and spices and feel satisfied!

      (not to rub it in to my fellow OLP sufferers)

      Yet, I should not complain as you have UC - that cant be easy.

      I agree stress is a major trigger but my life also is filled with stress (being the embodiment of the sandwich generation).

      and yes, depression is linked to anxiety so that goes hand in hand.

      My attemp to keep the OLP at bay, is also sticking to a plant based diet but eating fish as much as possible. My platelets are always slightly low so some animal protein is a must for me.

      I cant even say this is working as erosive OLP is an ongoing problem despite my attempts.

      I wish you the best in dealing with finding your triggers and managing them.

      Trudy

  • trudy98661
    trudy98661

    Posted

    glad you got the pemphigus under control.

    Indeed, we are all faced with the direct physical effects of stress.

    ohm

    thank you

  • Mollyjr
    Mollyjr trudy98661

    Posted

    I have found a few rinses for relief of OLP. My doc prescribed deximethesone. I also find peppermint essential oil drops in water and a mouthwash called Therabreath in fresh mint really helps soothes and helps them fade

  • julia52834
    julia52834 trudy98661

    Posted

    HI Trudy, I have OLP and lesions all over my body and yes I also have Sjogrens, Raynauds, Osteoarthritis, Eczema. I watch for patterns in myself and others also! One thing is I have 5 root canals which can possibly have a link. I also know for me my gut is messed up. For almost 30 years I was plagued with vaginal yeast infections only since going through menopause am I relieved of them. Also I am a naturally stressed person which definately causes flares. Good luck with your investigation please report findings!

  • anne13482
    anne13482 trudy98661

    Posted

    Hi Trudy,

    Sorry you have this rotten pest too. I also have erosive OLP. And I also have

    Coeliac Disease - an autoimmune disorder.

    My own research via other sites does lead me to believe that, for some, there might

    be a connection between OLP and dental work. Mine began almost immediately

    following having crown work done.

    Are you having treatment in the UK?

    Anne

    • Mollyjr
      Mollyjr anne13482

      Posted

      my OLP started after extensive dental work . i had a few done at a time. The first one started where the very first crown was put. Then as each dental work was done, there would be another. Its not as bad as it was in the beginning. If I eat spicy or acidic food, it will come. If I rinse right away with deximethesone or Therabreath mouthwash, it pretty much goes away until the next time.

    • trudy98661
      trudy98661 anne13482

      Posted

      Hi Anne, thank you for your reply ( and everyone else)

      My OLP was not caused by dental work .

      It is your immune system that is the root of the problem- there are multiple factors which CAUSE it to go haywire.

      Dental work/ root canal could have been a TRIGGER but not a cause (IMO)

      My autoimmune conditions are linked to carrying a virus.

      I had Hep C for many years and then had bloodwork that came back ANA+ ( autoimmune positive)

      After successful treatment, my immune system turned on my body causing OLP, then Hashimtos etc..

      I think removing the virus confused my immune system since I had NEVER been sick prior to this point.

      Age and hormones ( perimenopause) were also possible factors.

      I just wish there were more answers!

    • Mollyjr
      Mollyjr trudy98661

      Posted

      I believe mine is caused by an autoimmunity also as i have a high Rheumatoid Factor which indicates RA or a number of other autoimmune diseases.

    • christine_06421
      christine_06421 anne13482

      Posted

      funny you should say this, my regular dentist thinks an allergy may be involved, my 1st erosive area was the gum line of a crown I'd had for years. I have several crowns..so at the beginning it was only near those crowns, it does seem to be spreading now to nearby teeth. my biopsy mentioned LP, but also atopic changes which are allergies. I'm so confused now. I've had crowns forever with no problem. I also have eczema, dont know if that means anything. is your LP just in certain areas? mine gets better but never goes away.

    • Mollyjr
      Mollyjr christine_06421

      Posted

      you sound like me. I have had crowns for years too. Then all of a sudden, it started when I had them replaced one by one. I noticed its worse when i eat salad dressing or very spicy dishes.

    • rajkiwi
      rajkiwi Mollyjr

      Posted

      If you like a bit of chilly spice in your food, you could try Black Pepper grinds. They give the heat without leaving a painful sensation. It works for me. I have also moved to using smoked paprika as its got flavour minus the chilly burn.

      I used to have issues with eating bananas and even egg plant. Something in those fruits with irritate my oral cavity or tongue.

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