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...

1,709 Members

7,414 Posts

0 Online

grecogirl 01/19/2018

I am a medical transcriptionist and I was doing a report tonight for a patient, who didn't have MG but was on prednisone for another immunosuppressive disorder. The doctor dictated that prednisone loses it efficacy after time and it can cause renal crisis. I have been on 40 mg for the past month or so and I am not really seeing that big of a change in my condition. It isn't worse, but it isn't that much better, about the same. I am going to go see the neuro soon and I am going to try and research some of this stuff as well to present to him, i.e., Imuran and Cellcept (which I read is inconclusive). I am also considering going to another neuro for a second opinion. I don't quite know what I am expecting, but it couldn't hurt.

Rhanson 01/23/2018

It took about 4-5 months at high doses of prednisone to get rid of MG symptoms, and then I could taper it down. Prednisone works by lowering the immune system production of bad antibodies. Generally with enough, it doesn't stop working. However as it does have some serious side effects, we try to taper it down to the minimum effective dose and that is very difficult to figure out as thinks work in slow motion, sometimes what we do this week, only shows up next month.
My mother took 9-11 mg of prednisone per day from age 65 to her death at age 91. It worked for her all of those years and at that low dose the side effect were not terrible.
You may need to wait longer, and yes, an alternative medicine like cellcept or imuran may be a better choice long term, but they take even longer than prednisone to work. I took 60 mg of prednisone a day and eventually it did get rid of my mg symptoms. But at that level it had very bothersome side effects. My neuro thought that I would be able to take it at 15mg /day long term. As I tapered down waiting for MG symptoms to return, they didn't and so I got off of it and am in remission right now.
Good Luck Russ

grecogirl 01/23/2018

Thanks Russ. I think I am just going to stay put on the prednisone and Mestinon for now. I am only taking 1 Mestinon, may 2 a day and don't really feel I need more. I am not going to up the prednisone either; try and stay at 40 mg and hopefully in time, taper down. I am not going to fool around with Cellcept or Imuran either at this point. I will give this time, and if it takes 6 months, then so be it. If I stay like I am now, then so be it. I guess acceptance is part of the deal when you encounter life altering problems.

I will go see the neuro guy at the end of the month, and I may still go get a second opinion, but frankly I am tired of dealing with this and all that goes with it. I am functional now, not where I want to be, not to where I was, but it is what it is and I can't change that. Just like getting older, you can't stop time, no matter how hard you try to change it.

I just do what I can, when I can. I think the thing that bothers me, is I am just not that crazy about the doctor I go to and yet, they are all cut from the same cloth it seems. Again, I will give it time and if in 6 months, I am still in the same boat or worse (god forbid), I will go from there. Right now, I would just like to get the prednisone dosage down.

I will give it more time and maybe I should cut the prednisone down a bit and take more Mestinon instead???????

Join the Conversation