Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi,
I saw my MG specilist on Thursday and I am doing pretty good. I have gained some strength in my arms and legs, and do not have any trouble chewing, swallowing or talking! Breathing is still a little bit of an issue at times!! I will be tapering back on the Prednisone starting today. I will be starting by going down 5 mg every two weeks, until I get to 20mg, the if all goes well it will be 2.5mg every two weeks. Does this sound normal?? Is there anything I should be watching for? As I read in some of the other discussions I could get some of my MG symptoms back.
Thanks for ant advise you may have.
Carole
PS I am on Mestinon and Imuran also.
I saw my MG specilist on Thursday and I am doing pretty good. I have gained some strength in my arms and legs, and do not have any trouble chewing, swallowing or talking! Breathing is still a little bit of an issue at times!! I will be tapering back on the Prednisone starting today. I will be starting by going down 5 mg every two weeks, until I get to 20mg, the if all goes well it will be 2.5mg every two weeks. Does this sound normal?? Is there anything I should be watching for? As I read in some of the other discussions I could get some of my MG symptoms back.
Thanks for ant advise you may have.
Carole
PS I am on Mestinon and Imuran also.
1. Prednisone withdrawal
2. Return of MG
3. Acute adrenal crisis
Number 1 is more of a nuisance--the aches, pains, mental confusion and other symptoms as we drop prednisone from high doses to about 15-20 mg per day
Number 2 is what we might expect if we have underlying MG and don't suppress the immune system enough and it comes back.
Number 3 is life threatening. In theory the adrenals don't really start up again until the average daily dose is under 15-20 mg or even lower. So dropping from 60 to 20 should be easier as there is still plenty of cortisol available without depending on the adrenals at all. All we have are the prednisone withdrawal symptoms and possibly some MG returning.
As we drop lower, the adrenals have to start up and produce some additional cortisol to keep us functioning. This is quite variable--may start easily or slowly or not at all. Without a minimum level of cortisol, we crash.
I found tapering is easiest by increasing the time between doses. Every day goes to every other day , then ever 3rd etc. The adrenals are supposed to be started better when there are off days. If one had the money, could do weekly cortisol tests to see if we were tapering too fast.