Thanks, Johanna. I'm doing okay. Manageable stuff. It's just a bit frustrating as I try to get rid of this double vision that has been sticking around a little long. In January the double vision and ptosis went away and it came back in August (the double vision) and it's different from last time so my prism glasses don't work for it so I have to wear a patch on one eyeglass lens. So manageable but frustrating and I am just trying to be hopeful that at some point the prednisone and cellcept combo will do its thing again and the symptoms will recede into the ether. 😀

I was on cellcept too after prednisone- but now off cellcept too. I get monthly infusions now - gamunex-c. I’m feeling good.

Hope infusion helps you!

I have a lot of issues with balance and dizziness It gets so bad some days that I have to pretty much stay in my recliner and not do anything. So I try to watch tv, movies, etc, but my constant double vision makes it difficult. It gets better on prednisone but can’t stay on that for very long. So all this to say “I feel your pain”.

Wow. Thank you, Roberta. I am experiencing all you have experienced. I too thought it had nothing to do with MG. Disconcerting to say the least. And yes, pretty sure I am experiencing some hearing loss along with the fluctuating tinnitus (it does get really loud at times like a wind tunnel). And I feel by balance off more than usual as well. Do you really think this is due to evolving MG or maybe just separate symptoms of something else like hearing deficiencies or inner ear clogging or blood pressure? I am glad to have someone to talk with this about.

Hi Kevin - my 1st infusion on 9/12 it took me almost 3 weeks to feel better. 1st week I was very tired. 2nd week I had issues walking I didn’t feel steady. 3rd week felt better in my walking. Most of my walking issues I believe are in my head scared to walk by myself with my cane outside bc I had some missteps. My 2nd infusion 10/12 I felt fine didn’t even experience tiredness. My 3rd will be 11/12.

I usually take Tylenol and Benadryl just before infusion begins and make sure I drink plenty of water day before day of and day after.

I seem to transition well from meds for ex. prednisone to cellcept etc.