Sunday, December 6, 2009

Cellcept and Severe Oral Lichen Planus

I haven't written in for a long time, but thought that someone might want to know the latest on my status.

After several years of increasing Erosive (ulcerating) Oral Lichen Planus, I am now on a drug called Cellcept. It is working quite well for me. First I was given low dose, but that was not enough. Now I'm at a higher dose permanently and It's great. A test at lowering the dose resulted in increase of lesions,

Please don't jump in and tell me to use this that and the other thing. Believe me, I have already done that. Some things might work a little bit for some people, but I have what the doctors call an intractable case (I think that was the word they used.) Since I had been going to a University Medical Center and it is a teaching hospital, they were always taking pictures of my progress or lack thereof, and bringing students in to take a look inside my mouth to see the worst case they had ever seen. Honestly, I didn't mind. For all the doctors who I have seen who didn't have a clue, I am glad to take part in educating future doctors so they will know a case of LP if they see it again. I also have it on my arms, but not so bad as I used to.

Last year, out of desperation, I was on oral prednisone about 8 times just trying to have a little bit of respite from the damage going on inside my mouth. But, one cannot take high doses of Prednisone all the time without serious long term side effects. Won't go into details here. But will address the issue at a future date.

October of 2008 I was on a drug called Imuran which has been successful for bad cases of LP that don't respond well to the typical prescriptions. The one that worked the best for me was Clobetasol, but if a flare up was coming on, it just wasn't enough to keep my mouth from being in bad shape. The Imuran had immediate good results on my mouth but bad results for my body. I happen to be one of those rare people who have a very rare genetic condition that makes Imuran a time bomb. I became very ill. So, I had to get off of it. It's been several months since then and though it cleared quite well at that time, it came back with a vengeance. I continued to take low dose of prednisone for a few months while starting on the Cellcept.

Cellcept is a drug used in transplant patients to help their bodies to not reject the transplanted organ. Because the OLP is an autoimmune disease, the same concept works telling the immune system to calm down, take a break from attacking whatever there is in my mouth that makes it think it is something to attack.

They say that taking Cellcept will make me more susceptible to colds, viruses and infections. But, If my mouth can be relatively stable it will be worth it. My understanding is that I only have to take it for a couple of months.

I have not had any colds, viruses or infections any worse than anyone else I know. In fact I've only had two colds to speak of this last year. I am not protected from H1N1 yet.


lcreate1 said...

I also was diagnosed with elp
I also have hoshimotos, hyperthyrodism which runs in my family. I also am using clobetosal gel and dexamethasone rinse to control the pain and lesions. My cousin (Lives in germany)also has elp and was told she suffers from "histamin food allergy" which he believed to be causing her problem. her doctor put her on a strict diet and her elp has vastly improved. Have you ever heard of this (Histamin food allergy)?? It requires the complete elimination of certain foods from your diet.

Elizabeth Munroz said...

Hello lcreate1, Thanks for your comment. I'm sorry to learn of your diagnosis. I know it can't be easy,especially with your other autoimmune conditions to contend with. From what I understand autoimmune conditions do run in families, though they will not always be the same ones. I have not heard of Histamin food allergy. If it works for your cousin that's great. During the times when my OLP was so severe, I could barely eat anything at all so if I had Histamin food allergy I would think that not eating anything at all would have had me on the diet and improved my OLP but that was not the case for me. Unfortunately, the studies show I definitely have a severe case of chronic erosive oral lichen planus. I am just so happy that for a year now, the Cellcept has given me nearly permanent relief

Anonymous said...

Interesting blog. I was actually looking for images of lichen planus in the mouth, which are hard to find. I have had LP for about 4 years. Only one medication I use is prescription--the rest I had to figure out on my own. I have other medical conditions that have no real cure or treatment, so this just kind of fell right in with rest. It's frustrating at times, when I can only eat bland, soft food, but I realize medicine can't do anything more for it. I'm generally happy when I can eat some of things I like and the lesions aren't too big and nasty. Good luck with your treatment. Thanks for the documentation articles also.

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