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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debbie1973 05/26/2016

I have had MG for over 40 years. So after coming out of 25 years of remission I have been on 2000 mg of cellcept for 2 years. Well it started losing its effect. Doctor upped it to 3000. Still not kicking it. I have refused prednisone all this time, but with breathing getting worst she insisted. 20 mg started Tuesday & I feel even worst. Arms, legs, hands, swallowing, I haven't felt like this since before I had my thymectomy.
So can any one tell me is this normal starting on prednisone? Will it get better or is it maybe prednisone isn't for me? She said she would check by phone in 2 weeks.

jessicadrummond 05/27/2016

Do you take Mestinon? Sounds like you are having quite a few symptoms. The Cellcept and prednisone keep the antibodies from attacking the receptor sites, but the Mestinon helps the muscles to work.

reillyp 05/27/2016

I agree, Mestinon is definitely the answer for symptom relief and wud pose the same question Jessica has. Highly recommend u folo it up with your doc.

debbie1973 05/27/2016

I do take mestinon. I was taking as needed before. When my Doctor upped the cellcept she had me also start taking mestinon on a schedule so I would have I I in my system constantly.

When I was diagnosed at 14 there was just mestinon & thymectomy for treatment. Thymectomy did well for me till a car accident in 2011. I was 19 when I had my thymectomy.

Today is my 4th day on prednisone & within 5 or 10 minutes of taking it my breathing goes bad & I just want to sleep.

Thanks again.

MGOhio 05/27/2016

I know at initial "high doses", prednisone can make you feel worse BEFORE you get better. I'm not sure if your 20mg is considered a "high" dose, BUT we are all different.

I've never taken it (yet), so I only know what I've read, and what I've heard my friends here write about. I recall others writing about 60mg, so I may be off-base.

Do a search of this group's site for "prednisone" ; I know their is a LOT of chatter on the subject.

Praying for you. Chris.

mw40love 05/27/2016

Also, remember that prednisone is being taking for its anti autoimmune benefits. Unlike Mestinon, which kicks in first dose, in 30 minutes, the benefits of prednisone can take a month or more. I had other painful joint issues, so it helped me right away with those, but that is not MG related.

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