Quote:
Originally Posted by en bloc
For most there is NO treatment. However, some research docs think that IF (and only IF) caught within the first year of onset, that aggressive treatment with immunosuppressives and monoclonal antibody--B cell treatment (Rituxan, etc) MAY (and only MAY) reverse damage already done.
After the first year (and earlier for some) damage is permanent and irreversible. Then it is, as you said, symptom treatment only.
I don't know how long you have been dealing with this, so that's why I tossed it out there for consideration. I am 18 years into this, so no possible chance for 'treatment' other then symptomatic relief.
Do you have any other autonomic symptoms...like BP, heart rate, temp regulation, etc?
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I have been dealing with this for almost 3 years and it is very upsetting that none of my doctors mentioned any of these aggressive treatments. I did try prednisone in the earlier years but it made me CRAZY and I did not continue it for very long. At the time the doctor just said it would help temper the current flare.
This is the first I have heard of antibody--B cell treatment. I looked up Rituxan and it sounds like there are some very serious side effects. Have you heard Sjogrens success stories with it? Guess it is too late to try that out anyway since you said the first year.
My BP is extremely low but it is consistent. I am ALWAYS cold. No heart rate problems.
I do have to say this morning is pretty awful - this neurontin is making me so lethargic, grumpy and foggy. How is this supposed to be helping?!!!