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...

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Muscles & Bones
/ Myasthenia Gravis Support Group

Diagnosed last June

Michie
Michie

I was blessed with a PCP who knew what he was seeing when I first went in to see him, after losing my ability to chew, swallow well, use my tongue well, or say much over a weekend. Got blood drawn right away although it took almost 2 weeks to get results back. Was started on prednisone with it increased steadily until reaching 60 mg a day. Started mestinon immediately also with it increased steadily until reaching 90mg four times a day with options for additional dose as needed. Added Cell Cept one month later and in another month it was increased to 1500mg twice a day. A month later started a decrease of prednisone which is now down to 15mg daily with another decrease scheduled in a month. Although not yet in remission, I improved rapidly and am learning to manage symptoms if they appear and to adjust how I do things. I KNOW that I was blessed to get immediately to my doctor and for him to know what was going on. Then he got me to a neurologist with lots of MG experience. I'm looking forward to continuing to do better and believe remission is coming. Although that is a short version of my story, I wanted to introduce myself because I've been looking for an active support group. Hearing other people's experiences really helps.

Nanosecond
Nanosecond
Welcome Michie!
Thank you for sharing your MG story. I am just starting on Prednisone and have been taking Imuran/azathioprine for a month and a half. In addition, I undergo plasmapheresis every 10 days. I also am optimistic, especially since the Prednisone agrees with me so far. Maybe I will be one of the lucky people who become elated and energetic on Prednisone. Here's hoping! ;-)
- Nan
Rhanson
Rhanson
Hi Michie,
Welcome to the group.

Your story is certainly much better than many here! Mine is similar to yours in that with mestinon and prednisone I got my MG symptoms controlled in about 5 months and could begin tapering to find the least amount of prednisone to take.

Hopefully Cellcept will begin to take over the immune suppression so you can gradually get off of prednisone. Cellcept seems to be much less of a problem to take long term than prednisone.

Keep us up-to-date on how you are doing. It is good to hear that your treatment, what neurologists do as the "standard" treatment does work.

Good Luck
Russ
Michie
Michie
With the prednisone, the side effects didn't come quickly or all at once, so I was able to mentally adjust (mostly). The thin skin that easily tears, bruises, and bleeds is a bummer, but I'm learning to be more careful...most of the time. I've noticed that every time there is a prednisone decrease, a new side effect shows up or one already there changes. Often I wonder if I'm dealing with a symptom of MG, or a medication side effect. Before MG, I took two pills a day. I've already had 12.5 pills today, and will have had 7.5 more by evening. That is divided between 7 meds. So glad I can set my phone to give me reminders at the right times!
Rhanson
Rhanson
Prednisone masks many other problems we have including joint aches. As we taper it down, our ardrenal glands that produce our natural prednisone - like hormone, cortisol, have to start working again. I found that many of my symptoms were not MG, but the adrenals not getting started very rapidly. It took about 6 months after stopping prednisone to get past that. However, I could tell the difference as the aches and pains were treatable by pain killers whereas my MG symptoms weren't.
My strategy (neuro suggested) tapering was to go from daily prednisone, to every other day and gradually every 3rd day and 4th etc. When I got to every 7th day I stopped it. This was done over many months. Her idea was that the gaps between prednisone doses would stimulate my adrenal glands to get to work again.
Good Luck'
Russ