Posted , 8 users are following.
I HAVE HAD ORAL LICHEN PLANUS FOR 8 MONTHS & HAVE TRIED ALL TREATMENTS. NO IMPROVMENT AT ALL. I AM CONSIDERING TRYING
THE IMMUNOSUPPRESSANT DRUG CALLED MYCOPHENOLATE MOFETIL
(CELLCEPT). HAS ANYOE TRIED IT??????
0 likes, 8 replies
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sandy58862 may7777
Posted
I take the immunosuppressent PLAQUENIL. Interested in following this discussion.
richard92537 may7777
Posted
Have tried everything myself--it seems Doctors know very little about it--Is your taste affected badly--metallic?
havent tried this drug but might now--have you tried steroid tablets--usually work for most things--ie prednisolone?
Getting mine a bit on legs and arms--itchy but musnt scratch!!!
Take care
Las_Rosas may7777
Posted
I had LP rash all over my body (except hands & face) & eventually tried immunosuppressant (cannot remember name as 20yrs ago) but it worked and the body rash disappeared fairly quickly & never returned. But then it came back in my mouth some years later!. Not sure if related to the immuno drugs but perhaps worth checking with your consultant as personally id rather have the body rash than whats happened in my mouth since!!
Good4unurse35 may7777
Posted
i haven't tried cellcept, but my doc ordered Rituxan and a solution to swish made with tacrolimus. lots of good results. i also use a dental paste of triamcinalone. hope the info helps.
Guest may7777
Posted
I have Esophageal Lichen Planus and have tried Cellcept several years ago. Unfortunately it didn't help me. The biggest side effect I experienced was fatigue. I am currently on Rituxan which I have been receiving as an intravenous infusion every eight weeks. It has been amazing! My esophagus looks so much better and I haven't had to have a dilatation in approx. 2 years. (Yahoo)! As an aside, Prednisone can seem like a benign drug I guess partly because it has been around for ages but it comes with a whole host of nasty side effects. It's efficacy is not really all that specific either ....so it doesn't work all that well. Steer clear if you can. Wishing you great success with Cellcept! M.
sandy58862 may7777
Posted
MARY,
What specialist & tests are needed for esohageal lichen planus diagnosis? I live in the LA area.
Guest sandy58862
Posted
Hi Sandy,
To have this diagnosed requires an EGD, (upper endoscopy). This is best done by a Gastroenterologist who specializes in Esophageal diseases AND who has seen Esophageal Lichen Planus before. They will take biopsies during the EGD. Again, best to have these biopsies read by a Pathologist who has seen this condition before. I see a gastroenterologist here in Philly who specializes in Esophageal diseases but I also go out to the Mayo Clinic in Rochester, MN where I see Dr. David Katzka. (He has seen the a majority of the cases diagnosed here in the US). At this point with the Rituxan I have not needed a dilation for approx. 2 years (less is more) and am now just having surveillance scopes/biopsies done.
I developed progressive difficulty swallowing. Subtle and slow at first...likely over months/years until I was finally having episodes of food impaction (food getting stuck in my esophagus with trips to the ER to fish it out) with dense type foods...chicken, bagels, etc.
From that point 2008 it took until 2012 before I was finally diagnosed. The problem here is that in the meantime I was having my esophagus dilated periodically which unfortunately due to fibrotic reaction that this causes results in permanent damage. (Narrowing of the esophagus, strictures, etc.) So, early diagnosis is critical to preserving the structure and function of esophagus!!
If you don't fancy a schlep to MN you could reach out to primary care doctor and ask if they could track down a good esophageal expert locally for you 😃 You could also have that expert have your slides sent out for review to Dr. Katzka at Mayo. As there are not many cases of this diagnosed as of yet and as it can sometimes be a somewhat difficult diagnosis to arrive at, it is important to have someone who can weigh clinical symptoms + biopsy appearance + appearance of esophagus. Other studies you may/may not have done include: a Barium Swallow, Esophageal Manometry and Esophageal PH studies). Sorry for being so long winded. I hope this helps. Wishing you good health! M
Good4unurse35 Guest
Posted
absolutely agree with everything said by Mary...i want to add the importance of making sure the doctor is well versed in Lichen Planus. The biopsies have to be handled in a specific soluion (Micheles solution) to preserve the type of cells they need to look for, so regular formulin wont do. I also understand that the pathologist needs to be directed to look for the disease. Walter Reed in DC also has a great resource for this diagnosis.