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...
Your concerns are valid. It is possible to be allergic to a medication also. So that could've been your problem. After researching side effects long and short term before considering my treatment plan(Prednisone and Cellcept were really my choices), I decided to go with Cellcept, and as directed. There is plenty of evidence out there to suggest it being successful(if not the most successful) for MG, and it is used by many experts in the field. Not to mention it comes with the least risk I could find in regards to side effects. The composition of Imuran has some components similar to cellcept and yes Azathioprine is Imuran. That being said, they are not the same thing and I have heard cellcept not working for one person, and Imuran working for that same person, and vice-versa. I see the half-life(time in your system) for cellcept is 6X longer than Imuran (18hrs vs 3hrs). Results are different for everyone it seems...I don't blame you for refusing Prednisone. My Neuro doesn't recommend it at all unless cellcept does not work. She did say we could go to imuran if cellcept didn't work. I've done IVIG once and the combination of mestinon, mestinon timespan, and Cellcept is my daily life. It seems pretty evident that the cellcept is working for me at this point and after six months(five after IVIG). As for all the other effects you mentioned: bronchitis, COPD, etc being caused by cellcept as a side effect, it doesn't make sense to me. Unless you fall into the 1% category for coughing? Allergic reaction is something different though...I hope that helps
Here is information to read on cellcept and Imuran, and this is about as factual as you can get, in my opinion:
http://en.wikipedia.org/wiki/Mycophenolic_acid (Cellcept)
http://en.wikipedia.org/wiki/Azathioprine (Imuran)
Best wishes for peace
TJ
Prednisone is generally the first drug of attack if you are having severe symptoms. I"st effect is pretty immediate. With me I was out of a crisis within a few days after I was finally dx and treated with high dose pred. Usually a dr will start you on a prednisone sparing immunsuppresant like imuran or cellcept once your mg is under control and slowly wean you off the pred.. Like CJ said if one doesn't work, the other one might( or there are others you can try) I have only been on imuran for 4 months and I have been much better, but not sure exactly if it is the imuran( because it usually takes up to a year to kick in) or results from my thymectomy. Both cellcept and imuran lower your imune system and can make you more susseptable to illness and infection. My dr. started me on an antibiotic at the same time as imuran. There are side effects to all of these meds. and it is confusing trying to sort thru them and figure out what we need to take or do just to feel better. Lots of good info on www.mgfa
good luck!
Judith
. CJ- It could be an allergy. Not sure. The mestinon does not work very well for me. I had a little better luck with the time span but my neuro took me off due to bad muscle cramps.Is it possible to decrease dosage? I looked for a mg on the bottle but it just says one tablet twice a day. I will have to wait and see what this new nenurologist says in Baltimore. Thank you CJ.
Judith,
I did try prednisone early on. It was actually before they made the diagnosis. At the time, the doctor thought it was polymyositis. She started me on prednisone and I could not hold on to anything. I lost my grip and she immediately took me off. My grip came back and all was well again. Bizarre, I know. My neurologist says to just avoid it. ALong with hydrocon which made it so I could not breathe (to control coughing). The doctor wrote it up as an adverse reaction. I think I may just be sensitive to meds. Ever so frustrating. I think Baltimore will fix me up though....hopefully. Thank you for your response.
Best wishes,
Penelope
Please keep us posted on what you're doing. We are here for you.
Regards,
TJ
I have been off of prednisone for years but it really helped me when I needed it. The best to you!
Thank you all. I did check out the myasthenia gravis of America website and their travel tips. I assumed I did not need a medical alert bracelt as my doctor said it is not needed, yet there is a link for it on the website. Now I am a bit confused about that. My sister says yes I should. She is an RN for the army and has been spending much time researching mg for me. Her hospital in TN is patricipating in the walkathon. So very much appreciated. We (my neuro and myaself) are holding off on the Imuran until I see the doctor in Baltimore but I am back on timespan. I do feel much better as far as weakness goes but I did get all the side effects flooding back (muscle twitching, muscle cramps, as well as upset stomach). I am hoping that the more I take it the more my body will adjust. Maybe it will subside. Thank you again to everyone. I am unfamiliar with the "MDA clinic." Is that in Baltimore?
Penelope