Saturday, November 13, 2010

Going Off Cellcept

A week or so ago, I called my UCSF oral clinic doctor and updated her on a few things that have been going on with me medically unrelated to Oral Lichen Planus. We discussed when my next appointment is scheduled and she mentioned maybe we would discuss going off the Cellcept at that time. I told her I didn't see how that was going to be possible considering that even if I forget to take it for a day or two, my mouth gets all flared up again. But, still I am open to discussing it in the future.

In the meantime, because I am taking Cellcept to knock down my immune system, I am susceptible to viruses and bacterial infections and who knows what all. The changes are observable in my blood test results, usually with a lower than normal lymphocyte count in particular. There have been a few times when I have felt a little sickly, but nothing I could point a finger at and say what was the diagnosis.

But, this last week, starting last Friday night I noticed a sore throat coming on. Then, Saturday and Sunday, I felt feverish, fatigued, and full blown cold symptoms. I have had plenty of colds in my life, but never one quite so fulminate as this one. I felt like I was hit by a sledge hammer. Since I have had my flu shots, I am sure it is not the flu. Needless to say, my significant other also came down with the cold but was well enough in a day to go to work, while I was bedridden.

I went to see my new primary physician on Monday. (My old one retired.) I have been feeling pretty unsure of him so far. Aside from the OLP, I have a number of other medical problems to deal with, and my last doctor did a superior job of helping me keep a decent balance in my care. Yet, he asked the right questions about my symptoms and immediately ordered anti-biotics. This is the same thing my old doctor would have done under the circumstances, simply because the Cellcept might encourage the cold to turn into an infection, as I mentioned.

What surprised me, though was that he suggested I go off the Cellcept while I am sick with this cold to give my body a chance to fight it off, so I can get well.

I admit I was hesitant to consider it. After all that pain and suffering for so many years, then the best treatment for me came along and the Cellcept has put my OLP to rest quite well and made life more tolerable. Do I want to go back to that? I really struggled with the idea.

However, in the past, I have had some terrible infections for other reasons, and weighing out my options, it was clear to me to go ahead with the plan.

Oddly enough, I have now been completely off the Cellcept (no titering down) since Monday. So, here I am going on the sixth day and have no signs of an increase of my OLP symptoms. Everything is as clear as it was before I got sick.

I wonder if my body is so busy fighting off the cold that it can't be bothered with attacking my mouth. Or is it just a coincidence and this is one of those "naturally occurring remissions" I've been reading about that others seem to have.

I am including a picture here of one of the times that my mouth was flared up.

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