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 in 2011, after suffering double vision, difficulty chewing, swallowing and breathing. I was immediately given ivig and started on prednisone. Shortly after, my neuro started me on cellcept and started to discuss the process of weaning me off of prednisone and then having a thymectomy in the future. Three months later, i had an allergic reaction to cellcept and was switched to imuran. I weaned down to 20 mg of prednisone and then had an excerbation. i stayed at the hospital for three weeks, since they upped my prednisone back to 60 during the first couple of days at the hospital and then on the fourth day i became so weak i could not walk, stand up right. so after physical therapy, occupational therapy, swallow tests, I was released. I was able to wean down to 15 mg of prednisone and have been on this dose for about a year. over the last couple of months, I have noticed a lot more mg symptoms breaking through, more difficulty chewing, swallowing, eyelid tremors, difficulty forming words, slowwed speach and trouble breathing. My limbs tremor much quicker, etc. i discussed this with my neuro, and we decided to try Rituxan. I was able to only get one round, as the clinic supposedly got pre approval the first round, which i know wonder if they did, and now is unable to get pre-approval. So.. now what? Of more concern lately is trouble digesting food...I am going through the most awful gastro issues i vomit partially digested food almost every other day, with severe pain and nausea.. I went to see my primary.. she said I have almost no bowel sounds and that this might be mg related??? It also could be diabetes related, which i have developed of course due to prednisone. i will see a gastroenterologist tomorrow. i discussed with my new pcp and she suggested a second neuro opinion with someone from MASS GEN. I went on the website and i get the feeling that thymectomy is going to be suggested. I also heard wonderful things about a doctor at new haven and the success with rituxan. My neuro is currently trying to get me an appt. there. I was hoping for some feedback from some fellow MG'rs as to yr experience, thoughts, suggestions, advice. Thanks, Rebecca!
Let me know if you have any other questions.
Good luck,
Judith
I also had rituxan in December and have had good results. Although my abdominal muscles are much firmer now, I still have these digestive issues. He told me that I would likely always have this problem depending on my level of strength, but suggested I may also have a bacterial overgrowth brought on by slow motility so he put me on an antibiotic just in case. He also recommended I go back on Prilosec and add a fiber supplement to help move things out. He also tested me for celiac just to rule that out.
My experience with prednisone has not been good. I did ok on it for a couple of days, then crashed. I had a recent bronchial infection and tired a dose pak of prednisone but had to stop it on the second day because of alarming weakness.
How many infusions of rituxan did you have? I have only had one round. One infusion on December 2nd and another on December 30th. My neuromuscular specialist had to have a peer to peer review interview with my insurance company to get rituxan approved. I am now on different insurance, so I worry about getting it approved again.
Hope you can find the help you need.
hope you get ome answers.
Chuck