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Recently diagnosed LP

Posted , 8 users are following.

AnnieWilhemina
AnnieWilhemina

Hi all I've just found your forum phew! I was diagnosed with Oral Lichen Planus last week and was told to find a group by Dr as

there wasn't a cure. After reading your discussions I

have believe the other health problems I have may be linked and not just "my age" I'm 58. I was especially interested to read that

abnormal smears feature. I was treated for precancerous cell

around 15 years ago. So now I've just to work out which foods I

can no longer indugle in.

0 likes, 24 replies

24 Replies

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  • karen41728
    karen41728 AnnieWilhemina

    Posted

    Hi AnnieWilhemina

    There definitely is a connection between abnormal cells and hpv, as I said I am 57 and have these for 15 years also but recently getting worse xx

  • ladynewby
    ladynewby AnnieWilhemina

    Posted

    Hi Annie,  I have had LP for about 3 years now and it  was horrible!  I got to where I could not eat or talk because my mouth was totally covered in white lesions and my tongue was swollen.  It eventually got into my esophagus and I couldn;t even swallow my medications.  The esophagus was dilated 3 times and seems ok now.  My mouth has cleared up except one spot on my tongue which is raw, but no ulcers. I am hoping this will clear up eventually.

    My history:  My dentist noticed the ulcers when I went to have a cleaning.  He didn't do the cleaning.  I was referred to an oral surgeon who said it was LP but there was nothing that could be done for it and there was no cure.  I was so depressed, and even more after the lesions got worse. I searched the internet to find help and discovered LP also affects the skin, so I finally went to my dermatologist who did a biopsy to confirm the diagnosis and he prescribed medication.  It was a trial and error situation to find the medication that would work.  I was eventually given Mycophenolate Mofetil in capsule form.  I take 500mg twice daily.  Ask your doctor to let you try this medication.  Maybe it will work for you also.

    • AnnieWilhemina
      AnnieWilhemina ladynewby

      Posted

      Hi ladynewby Like you It was spotted by my dentist, and

      although I do have lesions on each side of my mouth and a

      couple of small ulsers under my tongue and I'm dreading a

      really serious outbreak. I know I've been lucky so far and

      I still have to make an appointment with my GP

      regarding my skin and other bits so that should prove

      interesting as they can't blame everything on my age. Thanks for info on the medication. I've just cleared my shelves of

      most of my toiletries which was passed on to my sister so no more temptation. Still to try out sqigle toothpaste as

      recommended by Wandula and as you say trial & error. Thanks for replying and your advice.

    • penny33699
      penny33699 ladynewby

      Posted

      Hi ladynewby,

      I was really interested to read that you had problems swallowing.  This was my first symptom and it took 6 years and a couple of misdiagnoses before I was told I had oesophageal LP.  The consultant told me it was very rare.  Since then my dentist has found a little in my mouth but, apart from not tolerating chilli, I've not had a problem with it.  The swallowing got to the point where I was hospitalised a couple of times with food stuck in my oesophagus.  Eventually, after many tests, I was told that my oesophagus was 1/2 the diameter it should be.  Since then, I've had it stretched twice and it has really helped.  Good to know that I have that option as a last resort at least.  I was also diagnosed with MS a couple of years ago but nobody seems to think there is a link - apart from the fact that both conditions are considered to be autoimmune in nature.  MS is probably triggered by the Eppstein-Barr virus so maybe hpv is a possibility.  I think both conditions respond to a vegan diet.  My health has improved enormously since I started that, although I supplement with fish so not a true vegan.  I also try to avoid wheat to keep gluten to a minimum.  BTW, I'm a 58 year old lady.

    • karen41728
      karen41728 penny33699

      Posted

      Hi penny

      I have LP and also had abnormal cells in cervix for which I had treatment about 14 years ago I have this burning in my mouth with spicy foods and itching and sweating the abnormal cells were caused by the hpv virus, have you got hpv and did you have treatment years ago for it

      Karen Xx

  • Nanny_mo
    Nanny_mo AnnieWilhemina

    Posted

    It is important to be referred to a specialist at a dental hospital as most dentists do not have the experience to treat OLP
  • Nanny_mo
    Nanny_mo AnnieWilhemina

    Posted

    I am told by consultant dermayologist that Lichen Planus is and auto immune disease and it is not known why people get it,. It can burn itself out in a number of years though OLP is for life.

     

  • karen41728
    karen41728 AnnieWilhemina

    Posted

    Hi Anniewilhemina

    Just wondered how you are noticed you havnt been on here for a while hope everything's okay

    Love karen

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