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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robt111 12/04/2015

I saw a new Neurologist closer to home. I've been having an IVIG every 4 weeks for over a year along with Prednisone and daily Mestinon. This Neuro wants to wean me from IVIG and onto Cellcept. He says IVIG should only be used for crisis. First time I heard that. Any advice would be appreciated.

cgreens 12/04/2015

Cellcept is the safest treatment we have. It could enable you to get off of all treatments.

Sounds fair to me. Go to Cellcept and believe it will help.

Rankin 12/04/2015

My 17-year-old son has been receiving monthly IVIG treatments for about six months. His MG is only ocular now and the treatments seem to help with his vision. He also takes Prednisone and Cellcept with an occasional dose of Mestinon (sometimes prior to workouts). The IVIG treatments were not prescribed because he was heading for a crisis. When it was thought he was headed for a crisis early on in his MG journey, he had plasmapheresis.

He has diagnosed in February 2014 and has been taking Prednisone since the spring of 2014 and Cellcept since the summer of 2014. He had a thymectomy in July 2014.

Cellcept is taken to eventually take the place of Prednisone. I would go ahead and go on Cellcept in hopes of weaning off Prednisone.

Good luck.

robt111 12/05/2015

Thanks to both of you, Rankin and cgreens, your advice was very helpful.

Bamboolilly 12/11/2015

Still on Ivig after 3 years. Keeps me stable and gives me my needed boost for a month

Bamboolilly 12/11/2015

And Aldo on Cellcept for 3 years. Starting to live a normal life.

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