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Have Cutaneous since 2009 (or before); Oral since 2013

Posted , 4 users are following.

julia96551
julia96551

Just found this support group.  Thought I had psoriasis with persistant scalp rash and detaching toenails since 2009 (always had very soft, brittle, ridged nails) .  In 2013 after a bad antibiotic reaction developed erosive/oral LP.  Nothing works so far except oral prednisone (plaquinel was worthless), dexamethasone mouthwash only helps a little.  Doc would not put me on azithrioprine last go round because my liver numbers were off (scared I had autoimmune liver disease--I do not drink at all and never had hepatitis or anything like that).  Now my liver numbers are normal, but I am having cataract surgery due to years on and off prednisone (for allergies, arthritis, immune issues).

When I went offf the prednisone this time, the oral lessions and scalp rash came back with a vengeance.  Big toenail had finally grown back about 60% after only being attached at moon for past 6 years, now it is only 40% attached again.  Have alopecia spot in pubic area (this disease is so disgusting) and my head itches horribly.  Mouth hurts and gums are receeding.

Feel my medical care for a systemic disease is disjointed -- dentist for OLP, dermatologist for skin.  Nothing coordinated.  If I had psoriasis I think I would get better care.  No one takes LP seriously.

1 like, 14 replies

14 Replies

  • karen41728
    karen41728 julia96551

    Posted

    Hi Julia

    Sorry you have this awful disease too it's just a nightmare. I am 58 and have all your symptoms, when I was 40 I had cone biopsy for abnormal cells after a smear test and I'm sure the two are linked.

    Doctors can't seem to go anything I was there a few weeks back my lips have a rash round them and he gave me some cream which hadn't done a thing I am sick of it.

    I can't eat anything spicy or my mouth burns like mad

    I talk with a couple of ladies who have this like us, where are you from and how old are you Julia X

  • Shehe
    Shehe julia96551

    Posted

    I have LP since I was about 30! it hurts, but a few things can help: exercise, positive thinking, relaxation, and in my case anti ammune medicine.

    I hope you can cope this desiese, and I know you can smile

  • karen41728
    karen41728 julia96551

    Posted

    I agree Julia I am exactly the same as you, how are you doing !!!!!! Have you ever had an abnormal smear test
    • julia96551
      julia96551 karen41728

      Posted

      Thank you Karen and Shehe for responding.  What is a smear or cone test?  I think I'm going to have to get a punch biopsy for my scalp when I see the derm.  Got rid of the rash on my shins by using a cortisone cream.

      I'm in the US, on the east coast and in my mid 60s.  Would like to try the azathioprine now that my liver numbers have mostly returned to normal.  Probably all the prednisone that got them up.  Did have a full autoimmune panel, but there was nothing amiss there (but they don't test for the LP or stomatitis auto-antibodies which are found in those 2 diseases).

      I did have frequent canker ulcers when younger, which is supposed to be an autoimmune response to normal mouth bacteria or even some toothpast ingredients.  Never had any type of fever blisters or herpes cold sores.  Never had any type of hepatitis at all.  Have a history of eczema, hives and allergies all my life.

      Family doc said it looks like my uvula is "disappearing."  Could that be from the steroid mouthwash or the OLP?

      Thanks again

  • karen41728
    karen41728 julia96551

    Posted

    Hi julia

    im in the UK  and over here every 3 years women have a smear test  which is a little scraping of the cervix it detects any abnormal cells if there are any they get rid of them then your smears are done every year to keep a check. 

    I had this problem when I was about 40 just after that I started on the menopause, then that's when all this started a few years later, no spicy foods it burns like mad and then the scratching my scalp drove me mad, at the moment my mouth at the sides looks quite thin and has been red and sore if it doesn't clear I have to go for blood test. 

    I am actually in contact with a few ladies suffering with this and am arranging meeting up this week. I live on my own in the middle of a divorce which is causing me so much stress which we are suppose to avoid, but it's so difficult been married 25 years and for the last 3 he's been living a double life, but I have 3 lovely daughters and 3 grandchildren, my youngest has just left home studying medicine at uni, I really miss her, shame you don't live a bit closer unless I jump on a plane!!!!!! Haha mind you wouldn't mind a change.

    its good to talk to other ladies with this disease as no one seems to understand it, do you have smear test over there Julia X

    • julia96551
      julia96551 karen41728

      Posted

      Hi,

      Had a hysterectomy at age 38, so even though I go to the gyn every year, I think I no longer need what we call Pap smears here in the states. GYN confirmed I did not have the LP there.  Just the mouth, skin, hair and nails.

      My ancestry is mostly UK -- English, Welsh and some Scots-Irish.  From East Anglia to Shropshire and Wales, then some Scottish.

      A genetic test showed I had an HLA type from northern Europe (Scandinavian and English) that is associated with autoimmune diseases like celiac and others.  I did have a celiac test because I read there is a high association with OLP, but it was negative.

      Symptoms first started when my mom was in hospice.  Guess the stress set it off.

    • karen41728
      karen41728 julia96551

      Posted

      Yes stress plays a big part in this disease I have that bald spot like you Julia it is disgusting do you have regular checks at the dentist and do you find the skin round your lips is thin, why do you see your gyne only my doctor seems to ignore this LP 

    • julia96551
      julia96551 karen41728

      Posted

      I go to a regular dentist every 6 months and the oral pathologist about the same.  I go to my gyn once a year because I'm on HRT.  He checked when I was diagnosed with the OLP to make sure I did not have lesions "down there."  Seems I have it everywhere else!

      My gyn does have patients with it and asked me for my oral pathologist's info because he has patients with both forms and wanted someone to whom to refer those patients.  I feel so bad for them.

      I see my regular doctor too, but she is mystified by LP.  She said she only has had one other patient who ever had it and just remembered it persisted for a long time.

      Rheumatologists in the US are completely uninterested in this disease.  They make lots of money in our health system giving infusions/IV drugs like Humira that are not approved for LP. So, you are left with dentists and dermatologists and no one doctor to treat it as a systemic disease, even though it affects multiple parts of you.

    • karen41728
      karen41728 julia96551

      Posted

      I'm the same Julia  my toenails are peeling off and I go to my dentist every 6month I find he's more helpful than my doctor who just goes off the subject when I speak about it I do think my skin on my face is much thinner round my mouth and my eye forever watering its a flaming nuisance think if I didn't have you ladies to talk to I would go mad x
  • amazing
    amazing julia96551

    Posted

    This is so interesting I have had issues with my big toenails several years ago and had thought that it was from wearing shoes that were to tight as it has gone away.  The other day I noticed that there is a small area at the top again - I have never lost the whole nail though.  My scalp is almost completely cleared and no itching although I still get an occasional sore - random.  I have also had ridged fingernails some worse than others which is a sign of osteoporosis as well.  I really feel that auto immune is the new catch phrase as none of the medical community knows what to do.  It is amazing that most of us are really healthy - go figure!!!!

     

    • julia96551
      julia96551 amazing

      Posted

      I was sure my toenails were from speed walking on the treadmill, etc., but even when I did not exercise for a year, it continued.  I was sure the head itching and rash were something else initially too.  Then, when I developed the oral symptoms, again, I was sure it was something else, until it got so bad I went to my dentist and right away he looked and said there were these white lines that indicated this autoimmune disease, and he sent me to an oral pathologist who said I had the OLP, and he looked at my fingernails and the reddish tinge above the moons and said "oh, that's a sign of the inflammation and the disease, and it sometimes causes a head or body rash, and nail detachment (luckily, my oral pathologist had in fact had the skin form himself at one time, so he had personal experience wtih it), then he looked at my toenails and said, oh, yeah that's it.

      For awhile, I thought I had psoriasis because I put "detached nails" (they are white with no crumbling like a fungus would be) and "head rash" into google and it came up with psoriasis.  But when I went to the rheumatologist to confirm after the OLP diagnosis, she said I did not have the psoriasis gene and it was LP.

      The head rash went away when I was on steroids, but now it is back with a vengeance.  I may need to get steroid shots in my scalp, which is OK if it will stop the itching and burning and keep me from losing the hair on my head.  I use Nizoral or T-Gel coal tar shampoo, and it helps a little, but not much.

      The steroid mouthwash helps about 60%, but the sores never clear the way they did on the pred and new raw areas sometimes pop up on my gums.  Plaquinel did not help.

      Interesting, my mom had the badly ridged nails like mine and she developed osteo very badly.  I'm on HRT to help prevent that.

      Has anyone used the azathioprine?

    • karen41728
      karen41728 julia96551

      Posted

      Hi Julia 

      how are you doing hope things are settling a bit and are under control, my mouth as been sore and I have a bit of a rash at the side of my lips so annoying doctor gave me some cream but not much use, what was the reason for your hysterectomy Julia?   X

  • amazing
    amazing julia96551

    Posted

    My osteo has improved actually 8 percent in my hip and .6 in my spine but I have changed everything about the way I eat - no sugar only stevia - try to stay at the 80 percent akaline and 20 percent acidic - only bottled vwater either reverse osmosis or distilled and I have a filter on my water softener to remove chlorine from the bath water.  My nails are better but I also take biotin - the other vitamins that I take are mostly for inflamation, stress and helping my adrenal and liver to function - all of this together has pretty much cleared up the scalp - who knows why - I did not do any meds as none of them seem to have worked for anyone anyway.  This whole thing is so bizarre - it is amazing that we can all be so healthly and have all these weird symptoms!

     

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