Quote:
Originally Posted by neutro
Mark, Kathy is absolutely right:
-your tapering scheme seems too fast
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Do you think dropping form 60 mg to 50 mg for a month should be the first step, not the 40 on the schedule? Then to 40 mg, 30 mg, etc.?
His advice is to do the 40 mg Preds for a few days and see what happens is the way to go. His goal is to eliminate the Preds as soon as possible with the fewest negative effects.
What can happen if the first step from 60 mg to 40 mg a day produces a negative result? Do the primary symptoms return, or do you just feel physically bad? If his happens, what is done. A return to a larger daily dose?
I have 10 days to vet t his out. I will be on the 60 mg until mid February.
Quote:
Originally Posted by neutro
-an immunosuppressant may take several months to kick in. It should thus be given during the tapering and not after!
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I will bring this issue up right away. He planned on immunosuppressant towards the end, perhaps during the 5 mg or 10 mg level each. He does not like the every other day schedule. I believe he was planning on a 1-year tapering period, perhaps longer. He wants me off Preds
Where ideally should immunosuppressant enter the spectrum? Where on this 1-yer timeline should immunosuppressant be introduced? I wonder if it was this that prompted the referral.
Quote:
Originally Posted by neutro
My advise: try to get in touch as quickly as possible with the MG group at Stanford hospital...
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My neuro said that the Stanford MG group knows things that have not yet trickled down to the rest of the Myasthenia Gravis Medical-Iindustral Complex. I was told that they world call me, not me call therm. Petty much what Stanford said when I applied for graduate school in 1989.
I am supposed to call Stanford in three weeks if I don't hear from them. Stanford is only a 20-minute drive from my apartment. I intend on taking advantage of this opportunity.
Here is the Referral to the Stanford Neurology department
Type: Physician Referral
Reason: Consult
Comment: 59 year old male with newly diagnosed myasthenia gravis, on prednisone and mestinon. Interested in imunosuppressant therapy. Second opinion on steroid sparing therapy.
Ten days ago I did not know I wanted that.
A week before my neurologist appointment, I sent a fax with the issues I wanted to discuss, chief among them were imunosuppressant and steroid sparing therapy. The fax may have a been factor in getting the referral.
Note: I started posting on this thread before I read the referral. I did not notice it among the other stuff they gave me as I was leaving.
-Mark-