Friday, October 1, 2010

A new update from Marilyn

Well, so much for my excitement that adding 30mg daily of prednisone would ignite faster healing. Consulted with my family doctor, and have increased the prednisone dose to 40mg daily as of 09/21/10. Also just had some blood work done to track the lymphocytes (white blood count), since I also take 3000mg of Cellcept daily.

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!


Anonymous said...

I was wondering if you get low blood sugars and have to eat some form of sugar to raise them and does this affect the lesions. I have been diabetic 39 years and am quite brittle. Anything I use to raise my blood sugar also causes the lesions to flare horribly. Since there are few diabetics with oral LP, I have not been able to find an answer to whether the sugar is the problem. My ENT says it's just the stress of the low blood sugar, but only lows increase the problem, not highs. I am thinking it is the sugar.

Elizabeth Munroz said...

Sugar, high or low, is not the problem with OLP, not the cause. OLP is an autoimmune inflammatory condition. Flare ups apparently can be related to physiological stress. See if you can find an oral medicine clinic at a local university. Get a second opinion.

Anonymous said...

I really have no universities near my home. Maybe I can email. This is a one-to-one correlation between eating sugar and how much the OLP flares. The scientist in me finds it hard to discount that much correlation. However, I will explore other avenues.

Thank you.

Elizabeth Munroz said...

Since Marilyn is presently unavailable to consider these issues, I find the concept unlikely. However, I am not diabetic and she is. Once she is available again perhaps she will have some ideas related to what you are considering. All I can say is based upon my own experience with sugar. Presently my OLP is more clear than it has been for years. Eating foods high in sugar do not seem to cause a flare up for me any more than if I were to eat cinnamon or other spicy foods. That, I think would be different that what you might be suggesting about low or high blood sugar being measured in the blood. Correct?

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