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 am age 74 male and while in hospital in Jan this year was put on 40 MG prednisone and 60 MG of mestinon 3 times a day which is now upped to 4 times a day. I have slowly getting worse since Jan 2017 and mostly my breathing is getting worse and lately at times i just about go to ER I am also o Cellcept for about 5 months . I have Emphysema for years however all test show it is stable and that there is muscle weakness at lung muscles. I understand that with treatment 2/3 people should be expericencing the max severity of the Myasthenis Gravis However i am scared about getting a myasthenia crises . Any one around with similar problems. Thanks and it seems mopst do not take cellcept and just is what my Nuro prescribed.
I took about 6-8 mestinon per day and was on 60 mg of prednisone per day for about 4 months to get MG symptoms under control.
Each of us responds differently to the medicines we take, and so treatment is really each one of us trying to find out what works. As the goal is to function daily (mestinon) and to suppress the immune system to stop making the bad antibodies so our neuromuscular junctions can regenerate as the long term treatment, we usually don't see immediate results from medications, but 7 months should be enough.
When treatments aren't working (or haven't started working), and symptoms are getting worse, we usually get IVIG treatments to keep us functional. They are expensive, but covered by medicare if we they are really needed.
You really need to persist with your neurologist to make sure that the doctor is aware of the problems and that you are not satisfied with the treatment -- especially if you are getting worse. A neurologist who is an expert in MG is needed as most neuro's do not have the expertise required. And you need to find a way to communicate quickly with the neuro. I found that calling the neuro's medical team member (a nurse) worked, as she connected with the neuro directly and was available to call daily.
I was diagnosed with sleep apnea a few months before my MG diagnosis (I had MG, but not yet diagnosed until my eye went shut and I got bad double vision). I found the CPAP (breathing machine) a great aid when I had breathing troubles and used it during the daytime for 30 minutes or so when I was having difficulty. It made breathing easier.
I ended up in the hospital with breathing problems before the treatment worked. They doubled my mestinon prescription and that worked to keep functioning. "It read 1 to 2 pills four times a day as needed. Take as needed." The theory was that prednisone would soon work, and in the meantime mestinon would keep me functioning. That was true.
Everyone has a different path with MG, but if you have been treated since January, you should have had improvement by now. The first year is the roughest, but it may be that your treatment plan is not right for you. Persist in pressing your doctor about this.
Good Luck,
Russ
just got out of Hospital yesterday with 5 days of IVIG and so fat it has not helped breathing in fact i have more weakness in my upper back and lower neck. The hospital neuro said most people see a improvement after the third day of IVIG and it must have worked back in Jan when I first had it . It is sure to figure this MG or for me anyway sure hope that you are doing Ok and glad you improved . how long have you had MG and thanks again for post .