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Anyone having issues with esophagus and lichen planus

Posted , 8 users are following.

carolyn1934
carolyn1934

I was finally diagnosed two years ago with lichen planus which is affecting my esophagus and possibly my right eye.  Is there anyone with these issues?  My many doctors are at a loss.

1 like, 16 replies

16 Replies

  • penny33699
    penny33699 carolyn1934

    Posted

    Hi Carolyn,

    I too suffer with LP in the oesophagus.  My consultant tells me it's very rare.  I have had problems with food getting stuck several times over the last few years and have had to have a gastroscopy to stretch my oesophagus and force strictures apart.  I was given the option of steroids but prefer not to take them.   I wonder whether there is any link with alcohol and/or sulphites.  I find it is worse if I am nervous or not concentrating properly on chewing endlessly before I swallow.  I've read that purslane can help and I also saw recently that low dose naltrexone may be effective.  I'm going to discuss this with my doctor.  I must say I'm pretty fed up with it all!

    • carolyn1934
      carolyn1934 penny33699

      Posted

      You sound like me. I have my throat stretched every 6 weeks or it continues to close. I tried cell cept for a while but no one could tell a difference. Doctors are at loss.

    • penny33699
      penny33699 carolyn1934

      Posted

      Sorry what's cell cept?  Every 6 weeks, that's awful.  Any thoughts on alcohol and sulphites? I'm rather too fond of a glass of Chardonnay.  I've also read that it could all be originally caused by a virus like Eppstein Barr.

    • penny33699
      penny33699 cookie27809

      Posted

      Yes I did. I think that is the only way to get a proper diagnosis. You?
    • cookie27809
      cookie27809 penny33699

      Posted

      Yes, but not for that. I've had swallowing problems for about 5-6 years. My GP says i have Gerd and my problem is caused by inflamation...i don't think so.

      i have the erosive kind of OLP, and it is pretty painful most of the time. Had biopsies for that and the results came back as lichenoid stomatitis. Which i guess is the same thing as Lichen Planus. None of the doctors no much about this condition.sad

    • penny33699
      penny33699 cookie27809

      Posted

      Sorry to hear that. Mine at least is not painful. They always assume Gerd but you know best. Same thing happened to me and they prescribed lanzoprazole which I turned out to be allergic to. Huge blisters in my mouth. They finally accepted that Gerd was not the problem. We all need to keep sharing information in the hope of finding answers. Writing this in hospital about to undergo amother stretch. Consultant says it is the only option for me :-(
    • cookie27809
      cookie27809 penny33699

      Posted

      Is getting the stretch painful? And how long does it last you? Thanks.
    • penny33699
      penny33699 cookie27809

      Posted

      Well , it's all done now and I have sore throat but that's all. Now dilated to 11mm which sounds tiny. I'm to go back and have another in 2 weeks. This time it has lasted 18 months. Bearable with general anaesthetic. Looks like this is the future for me now unless I can find any way to stop it narrowing.

    • cookie27809
      cookie27809 penny33699

      Posted

      I feel so sorry for you.sad  

      i may be a candidate for that procedure at some point too....

    • carolyn1934
      carolyn1934 penny33699

      Posted

      Mom has been doing this for over 4 years. It's a way of life now. If anyone comes up with something better...we would be elated! 

       

    • carolyn1934
      carolyn1934 penny33699

      Posted

      Celcep is a generic form of a drug that is given to people that has had a kidney transplant to help with rejection.  The idea is that the immune system that is fighting the body (lichen planus)will disapate.

       It is expensive, and seems to be causing other issues but not helping the esophagus.

  • karen41728
    karen41728 carolyn1934

    Posted

    Hi Carolyn 

    I have lichen planus and my left eye is always watering.... How old are you? 

  • carolyn1934
    carolyn1934

    Posted

    My mom is almost 82.  Her eye is in pain.  Sometimes unbearable.  ALL of the eye doctors and neuorologists can not find anything but a "small amount of inflamation" so we are on our way to Mayo Clinic this weekend.  

    • karen41728
      karen41728 carolyn1934

      Posted

      Really hope your mum as some relief soon  and they can help.... How old are you Carolyn ?   How long have you both suffere with it 
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