Monday, October 29, 2007

Telling a Friend

From an email I sent to a friend:

Among the various meds we tried, Lidex was not all that effective. According to the Stomatologist at UCSF, it's the worst case she has ever seen. (don't know why she had to tell me that also said incurable) She brought in a camera and took pictures and had me return the following week to use me for a teaching session for her students, which I really didn't mind, as I went five years with my local dermatologist not knowing what it was. If twenty future physicians will recognize it when they get someone with the same, at least they will know what it is.

Most of the time it is tolerable. Just have to eat bland food, and that is it. No problem there, as my tummy only likes that kind too. It is intolerable when it heads underneath my tongue and back of the throat and along the gum. Then a drink of water gets challenging, and there is considerable pain and swelling. Then it moves into raw bleeding along side the tongue.

That's when I call my doc for the prednisone RX.

Saturday, October 27, 2007

Challenged Balancing Act

My immune system is being a little challenged right now. Oral Lichen Planus is acting up, it's under my tongue and back all the way to the eustacian (I think) as it is causing pain in the ear and down the neck and beneath the chin near the salivary glands.

I've been through a number of meds in the past. Protopic was painful and not all that effective. Systemic prednisone the most effective. But, I hate to take it all the time. As it is I'm on it about 3 times a year. starting at 60 mg and titering down for about a week. That last's for a while and I feel great.

But, here I am again feeling low energy, mild fevers and so on. Recent blood test show lymphocytopenia. the others that go with it are off too, but only minimally, I was recently given tretinoin gel to put on my tongue, burns like the dickens, and is useful unless I am really flared up.

So I have gone back to Clobetasol. The only problem with it is that I will end up with thrush and have to go on antifungals for a while.

It's an ongoing balancing act.

Always seek the advice and supervision of a qualified licensed medical professional!

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