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...
My name is Tim. I was diagnosed with MG two months ago. I've been reading you guys posts for a month now, learning so much from you, and helping me through these difficult times. I had difficulty logging on, but I finally made it. I am really looking forward to being part of the group. I have a lot of questions, and I know there is a lot of knowledge here.
I have been on Mestinon since September 9th (60mg), and I started 10 mg of Prednisone on Sept. 26th. I have to start adding 10 mg's of Prednisone weekly until I hit 40 mg. I'm at 20 now. Does Prednisone cause muscle weakness? My arms and legs are very weak right now. I have difficulty trying to stand up over the last 3 days, and my thigh muscles and triceps are very sore, like I just started at the gym. I've been trying to go to work, but right now, I can't function properly and I'm worried about losing my job. I have to start 30 mg of Prednisone in two days and I'm worried I will get weaker. I've been having difficulty being able to take a deep breath for the past 3 days, but the breathing seems to be getting better. My doctor wants to start me on Imuran very soon. Does these medications initially make MG worse when first taken?
I also had a ct scan for my thymus, and the results came back good for that. No thymoma. How long before meds start to work?
Thanks everyone.
I have been on Mestinon since September 9th (60mg), and I started 10 mg of Prednisone on Sept. 26th. I have to start adding 10 mg's of Prednisone weekly until I hit 40 mg. I'm at 20 now. Does Prednisone cause muscle weakness? My arms and legs are very weak right now. I have difficulty trying to stand up over the last 3 days, and my thigh muscles and triceps are very sore, like I just started at the gym. I've been trying to go to work, but right now, I can't function properly and I'm worried about losing my job. I have to start 30 mg of Prednisone in two days and I'm worried I will get weaker. I've been having difficulty being able to take a deep breath for the past 3 days, but the breathing seems to be getting better. My doctor wants to start me on Imuran very soon. Does these medications initially make MG worse when first taken?
I also had a ct scan for my thymus, and the results came back good for that. No thymoma. How long before meds start to work?
Thanks everyone.
first thing is let your doc know what is going on, he may change some doses for you.
keep an eye on your breathing, if it gets difficult to breathe get to a hospital. If you do go make sure they know you have myasthenia.
sometimes prednisone will increase symptoms when starting on it.
where is your neuro at? I go to Presby to Dr. Lacomis. I am from the Johnstown area, and last Wed. I drove pretty close to Dunbar, I had an ambulance down at J & J in Morgantown for some work on the electronics and ran 119 home.
I have had MG for 10 years or so now, if I can help in anyway just let me know.
Terry
You may be tapering faster than your body can adjust. I started on 60mg and was on it for a little while before we started tapering. I also started on imuran when I tapered. I went a month at a time 60mg to 50mg to 40, 30, 25, 20,15, 12.5,.10, 7.5, 5, 2.5. I did have a thymoma and had a thymectomy in Oct '11. Right now I am only taking mestinon as needed.
If you are having trouble with your breathing, you should be seen. I ended up in crisis back in Nov. 'll, ended up with pneumonia and was lifeflighted to a bigger hospital, etc... fun stuff....anyways, being aware of your body and it's limits is important when dealing with MG.
It can take up to 8 months before the imuran is working in your body. I was taken off it because I had 3 attacks of pancreatitus. Others have faired well on it. I believe the thymectomy has helped me be where I am today.
It can be overwhelming...glad you found the group. Consider us part of your family. We are here if you need us, even to just vent. Hang in there!
CindyC :)
Cindy, I'm starting from the ground up with the Prednisone, icreasing 10 mgs a week, until I hit 40. I went through the same thing, making my symptoms worse when I started 10 mgs. Started to level off after 3 weeks, and it's been 5 days on 20 mgs, and it starts all over, except this time there is little or no slurring in my speech, vision seems to be better, chewing and swallowing is improving. The trade off is terrible weakness in my arms, hands, fingers, and legs. My breathing is getting better today, thankfully.
How much Mestinon do you take? I am taking 90 mgs every 4 to 5 hours. BTW, thanks for letting me be part of the family. I know I'll be alright now. Thank you.
I don't take mestinon every day, like I used to. The dosage I have is 60mg and can take it 3x daily. I only take it when I am really, really tired and feel the slurring and droopy eye happening. This past week I didn't take it at all. The week before I took at least 1 daily because I was feeling run down, but think it was due to a low potassium level. Now that I am back taking my supplements, I am feeling much better.
This group is great. A lot of awesome people who I have learned a lot from. You can usually find someone who can answer your questions and when you are feeling down they pick you up. Sorry you had to join us (having MG), but welcome to the family :)
I too am afraid of having to go out on disability....scary. Welcome....Barb.
I went through almost the exact same thing my first month on prednisone. I saw my facial muscles get extremely better but at the cost of my legs arms wrists and fingers. I ended up staying over night in the hospital during which time they ran some blood tests.
They thought it could be one of three things: 1. that I was having a delayed reaction to the prednisone and once adjusted to my high dose, I would begin to gain this strength back, 2. That I was feeling effects of my anemia due to all my plasma exchanges recently. Or 3. That I had steroid myopathy which is when your hip and shoulder muscles become very weak as a result of a reaction to the steroids in which the steroid starts to eat away at your muscle. Myopathy can be discovered through a blood test and if you had it, you would have to get off the steroids ASAP and start an alternative treatment.
They guessed I just had a delayed reaction to the steroids as nothing was found in my bloodwork but it took over two months to gain the strength I lost in my arms and legs.
It's definitely worth a call to the doctor because if it is steroid myopathy than you should be getting off your prednisone right away.
Best of luck,
Annie
The supplements I take are potassium, magnesium (as instructed by my neuro), vitamin D and calcium.
Glad your breathing is getting easier and hope the IVIG does the trick for you. Just remember, imuran can take up to 8 months before you start to see the benefit of it. Good luck! :)