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...
Hi everyone how are you doing today? i hope great. i was actually able to access my computer today & when i do i love to hear how others are coming along. I know i might talk to anyone frequent on here but when i am on i think of my fellow MGs & wish you all Well.
As for me i lowered my Prednisone from 5mgs to 2.5mgs everyday. the first 3 days wasn't well my hand was weak and i wasn't able to grab a hold of things well with my left hand. and the fact that i kept using my hand it felt like i was straining it and it caused me to have discomfort pain. luckily on the 3rd i was scheduled my regular round of ivig & my hand strength came back. so its okay now. but usually before my next round of iv i start to feel weak again & i hope my hand still has strength so i would have to deal with the hand weakness but besides that nothing severe has happened with the lowering of prednisone. Fingers crossed.
-Love Camy from California
As for me i lowered my Prednisone from 5mgs to 2.5mgs everyday. the first 3 days wasn't well my hand was weak and i wasn't able to grab a hold of things well with my left hand. and the fact that i kept using my hand it felt like i was straining it and it caused me to have discomfort pain. luckily on the 3rd i was scheduled my regular round of ivig & my hand strength came back. so its okay now. but usually before my next round of iv i start to feel weak again & i hope my hand still has strength so i would have to deal with the hand weakness but besides that nothing severe has happened with the lowering of prednisone. Fingers crossed.
-Love Camy from California
I wonder sometimes if the treatments we get are for the benefit of the medical institution rather than us the patient.
I have a difficult time understanding why so many doctors prescribe and patients continue on IVIG or PLEX long term. It is only a temporary fix and really does not get at the problem--our immune system churning out bad antibodies. IVIG seems to dilute them and PLEX remove them--but both only on a temporary basis. Unless they are part of a plan that includes getting off of them, I wonder why your doctor is dropping the prednisone level if you still need IVIG? I would think the opposite would be indicated.
The IVIG and PLEX treatments are very inconvenient, very very expensive, and other than for temporary relief of symptoms, do not move us forward on the path to stopping the bad antibody production. Instead they tie us to a machine.
If one can't tolerate prednisone or alternatives at high enough doses to lower the immune system, then I suppose IVIG or PLEX is left. However, we need to be careful not to take it just because it is a great money maker for clinics, hospitals and doctors. There is a lot of money to be made on these treatments and the medical profession is not shy about making money off of us. We need to ask are these treatments moving us forward to MG control or not.
Good Luck
I have friends here who even on these treatments can hardly function. Nothing else works or else is toxic to them.
It's not difficult to understand if your life depends on it.
I hope you keep doing better and better lowering on your prednisone!
Tapering down can be hard but as it evens off for a while,hopefully your strength will too. Glad you had the IVIG to help out .
Good to hear from you.
Be well,