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've learned a lot from people here about other things that I've been going through - double vision, taking mestinon - that I thought I'd seek advice again. They've put me on 30mg of prednisone, which doesn't seem like a lot, but they said they might lower or raise the dose as time goes on. I've been told to follow up in six weeks. They did not mention tapering just yet, but I guess I'm supposed to check in with them every week over the phone. I do trust them as I went to a myasthenia gravis clinic in Chicago, and was pleased to see people who've seen this disease a lot. They reassured me that as of now, I was not doing bad, and cautioned against reading too much into things that I might think are symptoms (an example is that every now and then I breathe shallow - as I've done in the past when anxious, and I have been anxious - but it goes away when I distract myself and I pass the "breathing test" with a score of 50+ when I check myself, or the fact that I've had little bits of food go above my soft pallate when I'm scarfing food down, but don't have any problem swallowing liquids, there's been a lot of these "oh no" moments that go away quickly), so I've been more positive.
I called to make sure that they want me to take all 30mg at once and the nurse said yes; is this usual?
I also got with my doctor today (my internist group has Saturday hours) and set up to monitor my blood for glucose and what-not as well.
You can tell I'm nervous and re-checking things, but I really want to do well on this. Does anybody else have more advice?
I called to make sure that they want me to take all 30mg at once and the nurse said yes; is this usual?
I also got with my doctor today (my internist group has Saturday hours) and set up to monitor my blood for glucose and what-not as well.
You can tell I'm nervous and re-checking things, but I really want to do well on this. Does anybody else have more advice?
I was told to be careful as when starting prednisone you might get more MG symptoms, I did my, my breathing went and I ended up in emergency. not all do that as I understand but it happens. My nuero gave me her cell phone number and told me to call her if I got worse. I got real bad and she meet me at the emergency. Good luck, but I can truthly say that the Predisone seems to improving my condition.
Will
Be aware that when first starting prednisone, you often will get a little worse before you see improvement. Report to your doctor any symptoms that cause you concern, i.e. shortness of breath.
Of course you will gain weight if you are not careful...so watch your diet.
Wishing you the best.
Bruce
Sounds like a great doctor to give you her phone number.
http://www.dailystrength.org/c/Myasthenia_Gravis/forum/14402384-counting-test-respiratory-function
Copper, I am so glad you go in with a clinic that has experience with MG. Just having mg and hoping you can find someone to help you is enough to cause anxiety. Please let us know how you are doing with the new treatment.
Cathi