1. Community
  2. Skin and nails
  3. Lichen Planus

OLP of the erosive variety

Posted , 6 users are following.

Soocee67
Soocee67

I was diagnosed with this 18 months ago. I was referred to hospital for biopsy which was traumatic. The doctor held my tongue and stuck needle straight in. The pain was so severe I passed out. My gp commented that he thought my treatment was brutal and unacceptable.

I was then referred to a different local hospital (we live between the 2) and was treated with kindness. I had further biopsy which was painful but bearable. Unfortunately this doctor now wants to refer me on as steroids are not sufficiently effective in controlling my OPL.

I have an appointment this week at Bristol Dental Hospital and am terrified of yet another biopsy. I am also frightened of being experimented on by students (not in general but in this instance).

has anyone any experience of this hospital? 

I don't know anyone else with this disorder and feel quite isolated 

3 likes, 39 replies

39 Replies

Prev Next
  • kaleani75551
    kaleani75551 Soocee67

    Posted

    Well good luck to you Soocee67.  Do not know what else to say except (again) why so many biopsies? 
  • rajkiwi
    rajkiwi Soocee67

    Posted

    Hi there, 

    I so sorry to hear of the brutal manner in which the doctor took your biopsy. Doctors told me I had OLP 3 years ago. They did not take a biopsy then as they said the symptoms were classic signs. I dont know why they are repeatedly taking your biopsy. Once established its done with. 

    Currently am on a replase and my lips are raw and inside the mouth is a bit better I think. Steroid clears off the OLP for me, which now the doctor is referring to as mucosal OLP. I was treated in New Zealand when I was there, Then in Australia and now in India. 

    I developed steroid related complication like diabetes and now the same has almost subsided. I am now on a steroid twice a week plus on an immunosuppressant daily till my lip heals. 

    Hope you get relief soon. 

    • Soocee67
      Soocee67 rajkiwi

      Posted

      Hi hope you feel better soon. Could you tell me which immunosuppressive

      you are on and if you have any side effects. It has been suggested that I go on these but I am rather worried about it. It's bad enough taking steroids.  

    • rajkiwi
      rajkiwi Soocee67

      Posted

      Hi Soocee

      I am on Azathioprine. It just 2 weeks since I started and am told it takes 4-5 weeks to start taking effect. I shall keep you posted. I am hoping I have an effective sterioid sparring drug as an alternative. 

      My doctor told me reducing steroids has to be done very carefully. The body produces 20mg everyday and once we reduce our oral steroid intake below 20mg we should taper very gently. I developed steroid complications like diabetes and it is now in control and almost left the system.

       

    • Soocee67
      Soocee67 rajkiwi

      Posted

      Thank you for sharing that. I do hope it works for you
  • Soocee67
    Soocee67

    Posted

    Hi everyone I have an appointment on the 15th to get results of biopsies and discuss further treatment. I had a phone call the other day from the doctor to say that the results were back and yes its still OLP and not any thing more sinister. It's very strange to be pleased with such a diagnosis but I am relieved and grateful for the call. Thank you for all your support
    • Guppy007
      Guppy007 Soocee67

      Posted

      I hope the next time they suggest another biopsy that you will say No!!!

      It's just ridiculous that you have had to endure all these biopsies simply because they aren't doing their job properly.  They made you feel like you had no choice, that you had to go ahead with another biopsy, so that they could rule out something more serious, like cancer, when in fact, once again it is just plain old OLP, that any doctor that knows his stuff, and is experienced with OLP should have been able to confirm!!! Especially bearing in mind that you already have had two other positive biopsies for Oral Lichen Planus to support this, thus  establishing the condition!  What are they doing differently for you now? Has the treatment changed? What are their plans for you?  If they don't have any, honestly you need to look elsewhere, find another doctor that knows what he is doing...  

  • Soocee67
    Soocee67

    Posted

    They want me to start on a course of immunosuppressives but I'm not sure about this. Apart from a raw mouth I feel well. Reluctant to commit to long term medication with many health implications. 
    • Guppy007
      Guppy007 Soocee67

      Posted

      I am taking immunosuppressants for Ulcerative Colitis, and I have to say I think it is helping with the Lichen Sclerosus, which I believe is not as severe as some. Concerning the OLP, I am also sure it is helping, there, as I cannot remember the last time I had a flare up.  

      Did they mention which drug and dosage that they had in mind.?  I understand that it seems like a big deal, but sometimes you need the "big guns" to knock things back, possibly even into remission!! that is not talked about often, but does happen for people with OLP.   It is something to think carefully about.  I have had no side effects or anything unpleasant while taking the immunosuppressants, and I have been taking them for over a year.

    • Soocee67
      Soocee67 Guppy007

      Posted

      Hi Guppy, I'm pleased to hear that immunosuppressives are working for you.

      They want to put me on mycophenolate mofetil. It comes with a long list of warnings! Which one are you on and are you taking it with steroids?

    • Guppy007
      Guppy007 Soocee67

      Posted

      I am taking Pentasa 3g a day, which is specifically for IBD, it is seen as an extremely safe drug, and it is the first line of treatment for IBD. I do not take any steriods orally, although I do use Clob cream occasionally because I have vaginal Lichen Sclerosus.  I looked online at mycophenolate mofetil and I must say it does seem to have a horribly long list of possible side effects..  

       If you want my 2 cents, I would probably take it for a month, or so,  not long term and low dose.  The reason for this is that I do believe that sometimes, rather like a switch being turned off,  Meds can do that with some conditions!!   Remember I am not a doctor, and I am only chatting with you about this, it is ultimately your decision, but also doing nothing will probably change nothing, and the doc did prescribe it,  and so I can't see the harm in taking this drug for a short time, but not long term.

    • Soocee67
      Soocee67 Guppy007

      Posted

      Thank you for understanding my concerns. It is a dilemma. I live outside most of the year. Walking, camping going to the beach and I garden for pleasure. The talk of skin cancer frightens me, it seems like a very high price to possibly pay to heal a sore mouth!
    • Guppy007
      Guppy007 Soocee67

      Posted

      I was just wondering how you are getting on.  What did you decide to do regarding medication, and hows your mouth at the moment.
    • Soocee67
      Soocee67 Guppy007

      Posted

      Hi Guppy, I had a long meeting with the doctor and then with the consultant. He understands my concerns. I take Doxycycline which has some side effects including a risk of photo sensitivity already. I am fit and well apart from a sore mouth. I wouldn't be so on immunesuppressants. The intention was for me to be given them for at least a year. I've not said never but I'm not ready yet. So I have steroid mouthwash and clobetasol in orabase. I can get systemic steroids if I need to from my gp. I have to go back in 4 month's time. Apparently apart from the OLP they were looking for Mucus membrane pamphigoid which looks similar but can affect the eyes. So I am relieved. Although they asked for my previous biopsy slides they needed a fresh sample to test for this. The doctor who performed it was good. It was 2 punch biopsies in my cheek and pain free and healed very quickly.

      It's a roller coaster this bloody condition. Any way I'm going to take a day at a time.

      Thank you for your concern Guppy it's really good to chat with someone who understands what it's like. I hope you have a good Christmas.

      Soocee x

    • Guppy007
      Guppy007 Soocee67

      Posted

      I think your right, and of course you have to go back in four months time anyway, and so they can review things then..you certainly have had a lot of biopsies! But hopefully, you can now put it all behind you. 

       Have a great Christmas,

      Guppy x

Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.