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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/ Myasthenia Gravis Support Group

mestinon and cellcept

jmslony
jmslony
I am taking 1000 mg cellcept twice daily. As this begins to work will i need to reduce my mestinon 120mg three times daily. some days i feel as though i am getting to much mestinon. Thanks
annkemp
annkemp
I neede to reduce mestinon. I no longer take any at all.Only in extremely busy times.
deleted_user
deleted_user
I work on the other side of the story. After starting on 60mg mestinon 3 times a day, I was moved to 60mg 4 times and 30mg in evening. I take 20mg predinsone a day, just enough to slow my imune system down and allow the mestinon to control my MG. if I miss a dose I pay by having problems. now I am being moved to cellcept to do away with the predinsone. Will
deleted_user
deleted_user
I take Mestinon as needed. Dose seems very tied to how well treatment is working or where one is in its process, so symptom control is necessary to the degree that one is having symptoms.
cgreens
cgreens
I have always taken the same dosage as you are with cellcept. I have done this now for two years as a monotherapy. Studies show that Cellcept should absolutely at the very least be able to reduce your need for mestinon over time. I have never taken 120mg of mestinon at once, although I have taken A LOT of mestinon over a 24 hr period, including taking mestinon timespan (180mg per) during the day and night.

Before I started Cellcept, my MG progressed taking mestinon only and avoiding treatment with cellcept or anything. I just got worse and injured myself, so I agreed to go on cellcept and do IVIG. I was still taking a lot of mestinon after the affects of my IVIG wore off in order to avoid taking prednisone until cellcept kicked in. I don't advise people to walk the same path as I necessarily, but if people want to avoid prednisone, I understand some of the decisions we can make completely...including thymectomy etc.

It wasn't until I started reducing my mestinon that I knew I was getting better. Now, two years later, I take a total of 120mg a day and of course, I do not take any mestinon timespan. My vision is symptom free and overall strength is probably like 75-80 percent and increasing gradually now to where it was before MG when I am at my mestinon peak. For example, before I could do 30 pushups for one set of reps and now I have been able to do 22. My next goal is 25. Worse part for me is just an unstable feeling.

I believe if I took more mestinon, it might help me a little more, but I know where I am at and I test myself as I go now...

If you feel like you are getting too much mestinon, you should lower your dosage. Try taking 90 mg and 60mg instead of the 120mg...or spread that 120mg out to more than three times daily and see what happens.

You want support for Cellcept? It has made a believer outta me!

Troy
deleted_user
deleted_user
jmslony,

I think you need to play by ear and based on how you are feeling that particular day. If you feel like you need your usual 120mg dose take it, if not take less of it.