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Thursday, January 31, 2008

No RX Filled

Note to friend:

Dr's appt went better than I thought. No need for biopsy yet. Got to get it under control first. MAJOR Steroids for "as long as it takes". Return visit in two week intervals. Then, consideration for biopsy if insufficient approval.

My further comments:

The dx now is Severe Oral Lichen Planus with a question of Pemphigus also. I have so many ulcers in my mouth, the right side of my face is swollen, plus swollen glands. I am so exhausted. complain complain complain!!! They brought in a cameraman to take more pictures again. Poor guy, I felt sorry for him, he winced. You'd think he would be used to doing this.

I asked doctor about the glutamine. She said keep taking it, as it can't hurt and who knows, maybe when things are better controlled it will help more than we can see right now.

Unable to have my UCSF prescriptions filled immediately as they have to be ordered from distributer. Called my primary care doctor who ordered by phone the steroids and mouth-swish medicine, (Nystatin) which had been part of the way it was handled in the past, so that I would have an easier time with renewals.

In the meantime, I have noticed the same as I have noticed before, sometimes. I now have a rash across my cheeks, bright red and burns badly. The picture to the right was taken August 2005. It is odd because it seems to come and go even within a 24 hour period.

Often my right eye gets very inflamed at the same time, but it doesn't seem to be like that right now. In previous eye exams, I was told I had "dry eye" and I have used artificial teardrops since then. Another time when it was really, really bad, the ophthalmologist told me it was called scleritis and gave me prednisone eye drops to take. As long as I did that, when it flared up, it really helped. But, another Optho, later on, discouraged me from taking the drops as they could cause blindness, he said. He was able to, however, insert little, (I don't know what to call them.... seeds maybe), into the tear ducts of my eyes. On one side it was the upper tear duct. On the other side it was the lower. I don't remember which one is which now, but one of them works and the other apparently doesn't.

I now have a prescription for Restasis eye drops, which I believe has some sort of immunity suppressing medicine in it called cyclosporine. I don't like to use them all the time, as it seems it even aggravates things. My understanding is that it works for dry eye by helping to reduce inflammation. Seems they also use a similar form of this to help kidney transplant patients to prevent from rejecting the foreign body part. Hmmm.

It makes me wonder if auto immune diseases are inflammatory diseases. If you get rid of the cause of the inflammation, then the body will stop trying to attack it. Right? But, what first causes the inflammation? Just genetics? I don't think so. Environment? Probably has something to do with it. Stress and emotional problems as some doctors would say, I am sure. How do you scientifically prove that without a large cohort?

Seems to me, labeling ANY medical condition as caused directly, and only by stress, in my opinion, is a unjust fallacy. Unjust, both, to patient as well as practitioner. It's an easy way out of seeking the truth, of using scientific knowledge to it's best degree. There are no easy answers and they must be sleuthed out as though Sherlock was in charge. The doctor is Sherlock, the patient is Watson. Between the two a team is formed and no one stops until their are definitive answers. The eye picture was taken March 2003.

With Erosive Oral Lichen Planus there is scientific evidence that makes it recognizable. Would there be any other differential diagnosis? Is the Pemphigus diagnosis that my ENT guy suggested in any way something that it could be confused for....and for so many years? But, no, the original biopsy was definitive, and I even called the pathologist to run the test again.

So then, the question remains. Can Pemphigus and Erosive Oral Lichen Planus coincide? Certainly Thrush accompanies OLP. No doubt there. That has been the problem already demonstrated in my mucosa. Treatments with steroids followed by treatments with anti-fungals. Everything finally gets back to as close to normal as it is going to be for a while and then suddenly my mouth turns into a chemotherapy factory. Or so it seems. When cancer patients suffer from "chemo mouth" they certainly have my sympathy. I cannot imagine how it might be. Mine certainly cannot compare. At the worst, of course the mucosa is swollen, raw, not quite bleeding but ulcerated, for sure. Obviously it sometimes affects the sublingual nodes beneath my jaw and right down the front of my neck and down below the ear. It makes it difficult to chew foods. No crunchy stuff! Nothing that requires a wide bite. No spicey, salty foods. No hot, no cold... lukewarm is best. Anything the consistency of pudding is best as long as it is not sticky, because then there is a problem of not getting it swallowed all the way, or it clings to the teeth. The healthy person would just use the tongue to wash the stickiness away from the teeth but that is way to painful, so I have to either use my finger to move things along, or, more painfully take a sip of water and swish. The act of swishing even the most innocuous substance does more harm than good. So dental hygiene then becomes a great problem. The more I brush, wash out, swish, gargle, the more aggravation it does to the mucosa. How does one keep a healthy mouth that way?

When the tongue swells, I slur. On the phone people don't understand me. I have to spell things out. Peter Pan, sounds like beater dan, for example. So I say P E T E R, and the person says B E D E R? and I say, P as in Paul, E as in elephant, T as in Tom, E as in elephant, R as in Rose. Oh, they say Peter Dan. Then we go through the next spelling game. I just have to live with it. I find that if I allow myself to be frustrated it only sounds in my voice and that doesn't help the other person to feel comfortable. I don't want others to think my own frustration is being blamed on them.

Erosive Oral Lichen Planus

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