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...

1,709 Members

7,414 Posts

0 Online

joel123 05/27/2018

Hello,

Please help. I am looking for help in finding another medication for my overall weakness. Of course I will use information to make suggestions to my neurologist. (I have a plasma Xchange scheduled, but have not been able to get my neurologist to make alternative medication recommendations as yet in past 5 months........ :-(

I am taking 25mg of prednisone daily (YUCK!), as well as methotrexate 20mg once a week. I can function throughout the day as far as walking, eating, driving, but that's about it, and physical tasks like yard work wipe me out within 1 or 2 hours. I used to be able to play tennis, 6 months ago, but that is no longer feasable. So, I am wondering what others had had success with, and knowing that everybody is different with regards to effectiveness of medications.

I want to switch out the Methotrexate, and ultimately lower the prednisone. (I have already tried Cellcept) I am thinking that Imuran is the logical next step, but has anyone tried Rituxan or Prograf?.....or could make other suggestions....

Thank You,

Joel

PeterL 05/27/2018

Hi Joel

All sounds very alien to me. The early days of MG are not at all nice even when following what might seem a conventional path to treatment. If I had been able to play tennis after twelve months I would have thought that to be fine. As it is I couldn't play much before. I assume you have a Neurologist with MG experience?

Take care.

fihghter 05/27/2018

hi Joel, as a mg patient for the last 8 years, and lucky to have an exelent neurologist whom work with me, and me being ib control of my life at 79 yrs. and after 3 majors relapses,sarted at 1000mgs. dayly of mestidone, and 200 mgs. of prednisone, also i have use ivg therapy in 2 ocasions, lenght of 1year each, i have discoverede in exersices taht no matter what you do you will loose strengh and tone, the best excersise that i would suggest is walking about 3 to 5 miles dayly as possible due yoga and small weight movements , Hand wheight ect. i know that every body is different and manifest doing the best is possible under the circumstances, swimming is very good, but if you excert your body you will have shorthenness of breath, muscle will feel heavy, and complications, will arise.
as for medications, try pyrystigame which is the generic of mestidone iam taking 30 mgs, dayly, as for predniosne is still the best corticoid dteroid to take, as it compliment the lack of cortisol in ones body as we only produce 5mg, dayly , i am taken 5 mrgs every other day, and i survive ok. also it is inportant that if you want to feel better you have to change complitely your diet, fish, chiken(no antibiontics) pork for theit enzimes, no beef or procesed foods,, as for your neurologist you the only one wjom know how you feel, and it is important to ask questions, if they lack in response after the second trial, i would suggest that you look for another, thry for a change look for a women nwurologist, they are more compassionate they will try to do what is wright for you, ho one more thing, as for ivgi, i use gamunex30. its the best , with out side effects
best of luck,
(fighter)

Join the Conversation