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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SeattleWriter 07/11/2016

Hi guys, finally figured out how to post here! What a trial. Phew. Question for the cellcept alumni: how long did you have to be on cellcept before you could begin to reduce prednisone? I've been on it five months now, and am hoping to finally taper soon, though my neuro hasn't given me a clear timeline yet.

Hope everybody's well!

migurl 07/11/2016

I was on Cellcept for about 6 months before I started to taper. The thing about Cellcept is that it can take up to a year (or more) to see a noticeable reduction in symptoms. Every patient is different and it has a lot to do with how bad off you were to begin with and how long you had been at your worst. Your metabolism plays a big role too because everyone metabolizes medication at a different rates.

Another consideration is how long you've been on the steroids and what you daily dose is. The longer you've been on steroids, the slower the taper will be. If you taper too quickly your adrenal glands will not kick in and you could (as I did) go into adrenal crisis which can be deadly.

Follow your doctor's instructions carefully and if at any point you feel like the taper is going too fast let your doctor know immediately. I can't stress that part enough.

Hang in there while you're still on the steroids. We all know how horrible they are but life-saving at the same time. Good luck to you and hugs.

Angie

jessicadrummond 07/14/2016

Thanks for this post! I have been on Cellcept for 4 months and was wondering the same thing. Good to read others' responses.

SeattleWriter 07/22/2016

Thanks Angie! This is helpful. I've started to very slowly taper, and it's going well so far. Fingers crossed that this continues on a good path! Jessica, I hope you have good results, too.

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