Friday, October 1, 2010
A new update from Marilyn
After 10 days of the higher daily dose of prednisone, my face is beginning to swell (typical of prednisone), and every afternoon about 4 PM, I feel a huge surge of heat and a general feeling of malaise, which I assume is also from the increased dose of prednisone.
The plan now is that I will remain on this combination dose of prednisone and Cellcept until resolution occurs of both the ulcerations and erosions of my oral tissues, however long that may take. A set timetable is not practical, and only has the potential to initiate another prednisone "rebound." If and when I get to a comfortable resolution, only then will I begin a taper off the prednisone, and only 1-2.5mg at a time, probably in one month increments. It may take me a year to get to a reliable "maintenance" dose, but I see no choice.
I already have reduced kidney funtion from 47 years on insulin as a type 1 diabetic, and have some damage to my left optic nerve from glaucoma. The predisone will only add damage to these two situations, but the OLP is the crisis now, and I'll have to deal with the pred side effects as they occur.
I am continually amazed at the excruciatingly slow pace at which these 2 very strong and dangerous immunosuppressing drugs work on the oral tissues. I have been on Cellcept since 07/08/10, and seen little if any result, which is why the prednisone was reintroduced. I still can only open my mouth minimally, still have painful erosions (although the bloody ulcerations have diminished in size, and are being very slowly replaced by some ugly, hard scar tissue). The exterior of the left side of my face is quite contorted from the internal scarring, and when people question my appearance and inability to move the left side of my face and mouth, I just tell them I have some paralysis. No point trying to explain this thing--way too complicated.
Hopefully, over the next 30 days, I'll see some marked improvement of the oral tissues. Can't imagine being like this for the rest of my life!
Always seek the advice and supervision of a qualified licensed medical professional!
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