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...
OK, I went to a UCLA MG specialist today. He likes Cellcept over Prednisone. I guess Prednisone is a short-term treatment, but what makes Cellcept better.
Cellcept is for transplant patients while Prednisone is for autoimmune patients. My doctor said the Cellcept will take 6 months to take effect while Prednesone a matter of weeks (maybe even a week).
Maybe cellcept is better if you get an infection /virus? But because it take so long to take effect, wouldn't take for ever to get it out your system?
Anyway, he is keeping my Prednisone at just 40 mg / day and starting me at 500mg of Cellcept. He also ordered some IVIG treatments until the Cellcept kicks in (every two weeks as long as the insurance pays - but with Obamacare my insurance program is likely to change at the end of the year - or maybe the individual policy will be eliminated - we will see).
I bet Cellcept has some long-term side effects too.
Cellcept is for transplant patients while Prednisone is for autoimmune patients. My doctor said the Cellcept will take 6 months to take effect while Prednesone a matter of weeks (maybe even a week).
Maybe cellcept is better if you get an infection /virus? But because it take so long to take effect, wouldn't take for ever to get it out your system?
Anyway, he is keeping my Prednisone at just 40 mg / day and starting me at 500mg of Cellcept. He also ordered some IVIG treatments until the Cellcept kicks in (every two weeks as long as the insurance pays - but with Obamacare my insurance program is likely to change at the end of the year - or maybe the individual policy will be eliminated - we will see).
I bet Cellcept has some long-term side effects too.
I am very excited about the progress being made at the small hospital that I work for. We have never had plasmapharesis before but my doc has pushed so hard to get that started in the 11 months with us. Today we did our very first treatment. It was awesome and I was so happy for the patient that got it. He MG struggles have been insane. I can't wait to see her progress over the next couple of weeks.
I wish you good luck though I know that it is scary making that leap. I started cellcept in February and remained on my prednisone. In April I started lowering my prednisone and I am currently only on 10 mg per day. I have some really rough days with the prednisone being that low but I've stopped gaining so much weight so I guess that's my silver lining. I started on 500 mg cellcept twice per day. About 2 weeks ago we increased it to 500 in the morning and 1000 in the evening. The verdict is still out for me and cellcept but I've felt much worse than I do now so I guess it's doing something.
Please keep us posted on your progress with the cellcept and IVIG.
Aloha,
Angie
Be well,
Angie, did the plasmapheresis patient fail to improve wih ivig? My doctor decided to use ivig over pp to avoid needing a central line. Many hospitals will do pp through a peripheral Iv, but ours will only use a central line. My mother in law is a dialysis tech and assures me the pp do very well during the pharesis.
Do any doctors try to avoid cellcept and other immunosuppressants in patients with cancer history? I haven't had cancer but there is a lot in the family.
Generally, the newer the drug the less side effects --not because that is necessarily true, but because the long term side effects may not yet be discovered. Prednisone and Azathioprine (Imuran) and methotrexate have been around longer than Cellcept (mycophenolate mofetil) and so the problems with them are better known.
Anything that lowers your immune system is going to allow other problems to occur including more susceptibility to cancer. So whatever you choose with your doctor, you will need to be very careful to monitor your ongoing health.
I chose prednisone to knock MG down quickly and had planned to move to Imuran next. My neuro was equally positive and negative about methotrexate, Imuran and cellcept and left low dose prednisone as a reasonable course too.
Good Luck
The doc asked me where I want to be in a year. I would love to be in remission, but realistically I hope to be on as low dose as possible of all of this stuff.
I had some upset stomach this morning. I feel fine now. It says to avoid antacids with aluminum for celecept. I like Tums better anyway.
I am doing fine right now, but still can't wait to eat more than 700 calories per day without worry. Late at night it is hard to swallow still and I get a ton of saliva now.
Also, it could have been a fluke, but I noticed a metalic taste within a second or so of taking the Celecept. I only took two
I feel a lot better since I have started taking it
My General started me on Prednisone to work up to 60mg per day. The new neuro said to top it off right now at 40mg and don't go above it. I think he wants to see if the Cellcept works, but I really want immediate relief.
BTW, I start IVIG on Friday and will also finish it on Saturday. I have mixed feelings about it. I am glad to see some relief, but know it is a short-term thing. It will be at a clinic up - maybe take something to read.
This last season I turned on the humidifier on my CPAP (with C-flex) and woke up with water in my mask, mouth etc. It was horrible, and I wasn't even affected much by MG back then.
We need a better solution that suppressing the whole immune system to go after one antibody. More research needs to be done - and will be some day.
Good luck!
TJ