Steroid Sparing Therapy
 

My neurologist has diagnosed 2 other MG patients, but treats 5 others who came to him already diagnosed. My 60 mg Prednisone tablets run out Wednesday, February 12th. I only have 6 days to resolve the issue.

This is my neurologist's tapering plan:

The Prednisone reduced from 60 mg on the following schedule:

• 40 mg tablets for 30 days
• 20 mg tablets for 30 days
• 10 mg tablets for 30 days
• 5 mg tablets for 30 days

Many though that this plan was too fast.

I was considering the following, 60 mg reduced to:

• 50 mg tablets for 30 days
• 40 mg tablets for 30 days
• 30 mg tablets for 30 days
• 20 mg tablets for 30 days
• 10 mg tablets for 30 days
• 5 mg tablets for 30 days

My neurologist also wanted to start any immunosuppressant late in the tapering process. I know from the warning of other in the forum, that it might take 6 months to more than a year for immunosuppressant to start working.

I favor cellcept now, but my neurologists refereed me to Stanford Hospital's MG group. They might have other immunosuppressant suggestions. It may take weeks or longer before I can see them, though.

When is the best time to begin cellcept? Right at the first Pred drop?

Why do you think my neurologist want to go so fast, without an early immunosuppressant, and with the goal of taking me off the Preds permanently?

-Mark-

I wish I had started cellcept from day 1. It is the only thing that really helps. I saw some results within a month, but it seems to be progressively helping more. I have been on it about 3 months.

Hello Mark,
This is taken from a reference I indicated to you before:

Prednisone
Maintenance

Start taper after: 3 to 6 months; or clinical improvement begins
Taper slowly
Initially by 5 mg on alternate days q2 to 4 weeks until 50 mg and 10 mg
Then by 2.5 mg on alternate days q2 weeks to 50 mg and 0 mg
Then taper high day dose by 2.5 mg q 4 weeks
Minimum dosage is qod if possible.
MG will recur in virtually all patients if Prednisone is stopped without additional immunosuppression

Clinical improvement: looking at your food program, you still rely heavily on mixed food, which is indicative to me of severe chewing and swallowing problems, to-morrow I will try to dig out a scoring test for your physical capacities.
I never tapered more than 5 mg at each step which lasted at least 3 to 4 weeks and later on, never more than 10 % of the dosage.
After each step, I felt rather bad for about 10 days to 2 weeks, I guess that was the time necessary for the body to cope with the new dosage.
I started Cellcept at day one but it didn´t work for me and I stopped after 4 years...
Too rapid a taper will surely send you back to where you started...
Any news from Stanford hospital?
Maurice.

Maurice,

Stanford called on Friday afternoon. They said it takes 48 hours to review my medical record and they would call on Monday afternoon. This should give the time to speak with them before starting the tapering program. My 60 mg Preds run out on Thursday.

Take care,

-Mark-

Can you refill the prescription? You can't just quit.

Yes. CVS had a refill ready for me this week, but I told them we could wait a few days.

-Mark-

Hi Mark,
This is yhe scoring test I was talking about:
http://neurotalk.psychcentral.com/sh...825#post406825
By using it, you can score yourself and follow the evolution of your condition.
Good news from Stanford...!
If I were in your shoes, I would stay with 60 mg/d Pred until your appointment at Stanford and most of all, as southblues wrote, do not stop taking Pred!
Good luck and take care,
Maurice.

Marice,

My jaw muscles have been very weak for the last year and a half, one full year before my diagnosis. It was subtle at first. Seem OK when starting to eat, but my jaw muscles would get tired mid-way through a meal. Later it was better. I didn't tell my primary care doctor about the weak jaw. I assumed it was the result of dental issues. Had I told him, he would have diagnosed MG many month sooner.

I also have some trouble swallowing. Sometime my speech is nonexistent. I could not make the "kissing sound" with my lips. I could not even lick a spoon clean. All of these have greatly improved since starting the 60 mg daily Preds a month ago. The results have been quite remarkably. I didn't realize how bad it was, until it started to get better.

I am accustomed to eating this way. It is not that bad, in fact I'm really beginning enjoy it. I no longer have the cravings for greasy foods, like fried chicken and ribs. In fact, I find the though of eating stuff like that repulsive.

-Mark-

P.S.: Thanks for the scoring test.

My neurologist prescribed another 30 days at the 60 mg a day level. I will find out from him how long he anticipates me being on the high dose.

I picked up the new Preds on the way to work tonight, so I ave a 30-day supply.

-Mark-




-Mark-

Stanford Apointment
 

I have an appointment in two weeks. By that time, I will have been on 60 mg daily Preds for 6 weeks.

-Mark-