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...
I was diagnosed with MG last Septmeber. Since then I've been taking Mestinon three times a day. My dr started me on plasmapheresis three times a week every three weeks, it seemed to help some but then my insurance stopped paying for it. So she in December I started IVIG, which I have my last one next week. I was doing them one time once a month. But it seems like by the third week I am weak again and my eye starts drooping worse.
I'm not the best at taking my mess but during the week I am better than the weekends. A few months ago my dr put me on Cellcept, 4 a day plus the Mestinon. But I feel like when I take it I feel worse. My breathing is much more labored and my stomach is upset a lot. Has anyone else had this happen? Some days I feel like I'm so confused on all this MG stuff and others I feel like I haven't given the mess long enough to work? It's been three months since I started the Cellcept.
Anyone else had this issue?
Karla
I'm not the best at taking my mess but during the week I am better than the weekends. A few months ago my dr put me on Cellcept, 4 a day plus the Mestinon. But I feel like when I take it I feel worse. My breathing is much more labored and my stomach is upset a lot. Has anyone else had this happen? Some days I feel like I'm so confused on all this MG stuff and others I feel like I haven't given the mess long enough to work? It's been three months since I started the Cellcept.
Anyone else had this issue?
Karla
I have to eat a couple of bites of something when I take Mestinon or my stomach gets upset. I take Imuran so I am not familiar with Cellcept. Good Luck. Barbel
Are you 14 or 24? How much Mestinon are you supposed to be taking? Do you see a neuromuscular specialist, someone who has seen lots of MG patients? Your progression so far as treatment seems rather unusual, although it may be the best for you. Do you have any complicating medical issues like asthma?
In general Cellcept is a very long term medication. Mestinon, PLEX, and IVIG work much faster, but are not long term solutions to to the basic problem, although they may keep many people relatively symptom free, some for many years. I imagine there is some reason prednisone and thymectomy have not been discussed or are not being considered. From your medication list, it would seem that your MG is relatively severe, and right now you are depending on IVIG and Mestinon to keep symptoms in check. It will be a while before the Cellcept kicks in.
Discussing your medication options with your doctor seems in order, but we may have suggestions of questions to ask. There is information in the Links Group about Mestinon and prednisone in particular and overviews of MG that include discussion of medication treatment. Knowing how things work and what is available is always helpful. b.
By accident I found out I could go longer between doses of Mestinon.
My breathing is better. Never realized that it was reduction of Mestinon until now.
I take 90mg twice a day instead of 4 times a day.
Maybe try going one hour longer without it and so on.