After Neurologist Visit
 

I had a very positive visit with my neurologist. The Preds are working. I will continue on the 60 mg level for the remainder of the 30-day supply.

The Preds reduced on the following schedule:

• 40 mg tablets for 30 days

• 20mg tablets for 30 days

• 10 mg tablets for 30 days

• 5 mg tablets for 30 days

After some time on the maintenance level, the Preds will end.

At this time he will prescribe an immune suppressor and wants me to learn the relative benefits and drawbacks. He likes Cellcept.

He also refereed me to some special MG group at Stanford Hospital. My neurologist said they are the experts and will know the best immune suppressor for my individual needs.

He has only diagnosed 2 other patients in 5 years.

I asked him if I would have been diagonalized with a negative blood test. He said no. They would move on to the other tests.

Second CT scan of the abdominal reveal no problems. There is a larger than usual adrenal gland. I'll Google it later.

The things that I have learned here has made a big difference.

Thanks-

-Mark-

I had a similar weaning process and it ended up being too fast for me. If after, the first step down you fell bad even after a couple of days, you may want to talk to your neuro about stepping down slowly and starting the second immunosuppressant now. The idea is the second immunosuppresant has time to kick in before your MG symptoms worsen from weaning off prednisone.

good luck
kathie

Yep that is why I am going through a bunch of test even though I have all of the symptoms. Im glad everything is working.

Thanks.

On this point, he said we wold watch closely, but that everybody is different. He seems to really get that.

I still have 11 days left of the 60 mg tablets. Sleep has been a problem.

-Mark-

What are they doing to treat the symptoms?

-Mark-

Mark, Kathy is absolutely right:
-your tapering scheme seems too fast,
-an immunosuppressant may take several months to kick in. It should thus be given during the tapering and not after!
My advise: try to get in touch as quickly as possible with the MG group at Stanford hospital...
Maurice.

Speakikng on Preds
 

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.


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.


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-