Oral Lichen planus and Cellcept

Posted , 10 users are following.

My Mother has oral lichen planus. She has had it for 4 years. She has seen the leading specialists in the country and none of them have been able to even get it under control. She has basically existed on oatmeal for these 4 years. Her doctor has just prescribed her the immunosuppressant drug Cellcept and she is on her 6th day of it. Has anyone taken Cellcept for this and what were your results? Thank you so much for any info in advance.

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  • Posted

    Yes, I take Cellcept - 4 tablets a day. Yes, it completely healed my Lichen Planus in about a week, but there is a downside. It has awful side effects. (at least it did for me). Hair loss, rapid weight gain and sore muscles. It is an auto immune drug after all so the side effects are not all that rare. You have to decide what is more tolerable. For me eating is a priority so I take it! 
    • Posted

      Hi! How long have you taken Cellcept?  I had terrible hair loss for 15 years after a shock to my system cause it to start falling out.  It has taken 3 years of being on Cellcept and the hair loss has stopped and my hair is growing back.  Yay! I have had no other side effects.  No weight issues (which I haven't caused by my own desire for eating-haha!) and I don't have sore muscles.  My hips ache but I think that's a little arthritis as I am 65.  Like you, I'd rather be on this drug and be able to eat.

      I still hope a cure comes along, but I'll take Cellcept unless it goes into remission.  I have a friend who had that happen.

    • Posted

      Hi Sasr24, I have taken Cellcept since December 2016. Like I said it works just fine, but the hair loss and weight gain are a problem. What did you mean that your hair loss was from a shock to your system? Not Cellcept???

      By the way I'm 72 and this is the first time in my life that I've had LP.

  • Posted

    Hello,

    I'm happy that cellcept has worked for you, hopefully it will for me as well. I take 3000mg a day of mycophenolate mofetil and 60 mg of the devil drug prednisone. So far, no luck with either. Only dude effects are from the steroids

    • Posted

      How long have you been on cellcept?  It took three to six months for me to start noticing a difference, longer before the OLP was under control.

      I hope you have success.  Stick with it as long as you can.  I've been on it three years.  I still have occasional problems, but 95% of the time I'm okay.

       

    • Posted

      The Cellcept Mofetil that I take is only 500 MG and it does the trick. Its fine except for the side effects UGH!
    • Posted

      I've been on Cellcept for 6 months, but my mouth started to heal after taking it ohly a few weeks. 

    • Posted

      Taking 500mg twice a day wasn't enough for me.  I now take 1000mg morning and evening.  I'm thankful it works and I have only occasional flareups.   It's the only medication I take.  I am healthy otherwise.    My dr. does bloodwork to be sure my vitals are not affected.  I'd love to be off it someday, but will take it as long as i need it. I'm glad it is helping you and others. Wishing you all better health in the future.

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