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...
Hello group!
I joined this forum recently wanting to learn more about my condition and how to live with it utilizing the minimum medication.
First and foremost, I seem to have a mild dose in comparison to most stories I've read on here. I can still function in every way I ever did, just not so vigorously. I'll keep the drawn out story to my Journal entry for those who like a bit of historical context.
That said, what brings me to write here today is the symptom of poor circulation in my lower body half (legs, ankles & feet). They're freezing ... almost always. The other things I've noticed which are new, is the cramping. My hands, feet and toes ... it's like they have a mind of their own.
I started taking prednisone Feb 6th this year. I tapered up to 20MG (5MG increment each week) and have been at 20MG for 2+ weeks.
At the starting of the 5th week, my eyes returned to normal (no droop, no double vision ... which was my goal), and my formerly lost strength for weightlifting is returning back surprisingly quickly.
Given the mild condition I seem to have and my body's sensitivity to medications, I speculate that I probably could have stopped at 15MG of prednisone to get the benefits I'm getting.
What I also think is that this medication has caused a spike in my blood sugar and I'm seeing the onset of self induced diabetes a symptom of which is poor circulation.
I've got a call in to my new Nero doctor, but his staff will take time to book an appointment to ask a question.
What I want to know (if I decide to drop back down 5mg on my own), has anyone else experienced/read about this type of reaction so soon, and on such a low dose of prednisone?
Thanks, and good to be here.
SH.
I joined this forum recently wanting to learn more about my condition and how to live with it utilizing the minimum medication.
First and foremost, I seem to have a mild dose in comparison to most stories I've read on here. I can still function in every way I ever did, just not so vigorously. I'll keep the drawn out story to my Journal entry for those who like a bit of historical context.
That said, what brings me to write here today is the symptom of poor circulation in my lower body half (legs, ankles & feet). They're freezing ... almost always. The other things I've noticed which are new, is the cramping. My hands, feet and toes ... it's like they have a mind of their own.
I started taking prednisone Feb 6th this year. I tapered up to 20MG (5MG increment each week) and have been at 20MG for 2+ weeks.
At the starting of the 5th week, my eyes returned to normal (no droop, no double vision ... which was my goal), and my formerly lost strength for weightlifting is returning back surprisingly quickly.
Given the mild condition I seem to have and my body's sensitivity to medications, I speculate that I probably could have stopped at 15MG of prednisone to get the benefits I'm getting.
What I also think is that this medication has caused a spike in my blood sugar and I'm seeing the onset of self induced diabetes a symptom of which is poor circulation.
I've got a call in to my new Nero doctor, but his staff will take time to book an appointment to ask a question.
What I want to know (if I decide to drop back down 5mg on my own), has anyone else experienced/read about this type of reaction so soon, and on such a low dose of prednisone?
Thanks, and good to be here.
SH.
Regarding NEGB's comment about not trying to reduce the prednisone too soon, I will be reporting to my Nero today after cutting back to 15MG for 10ish days, that I'll be resuming the 20MG per day. My right eye is starting to drift right again and ... I just don't want to go back there yet ... ever.
I've heard your advice ... no more wine with friends / dinner.
I'm consistently taking my supplements, and am forcing myself to sleep (or lay there) the full sleep quota and not allowing work guilt to get me up 3 hours early.
There are two things I'm still not doing very will ... stress management and diet.
Stress management I don't quite know how to deal with it other than radically changing my lifestyle, responsibilities and retirement projections ... so maybe yoga will have to do?
I've also not really altered my diet. It isn't bad, no deserts ... but haven't went on a strict diet at all. I researched foods that boost your immune system and there are a few I really don't want to give up ... garlic that will hurt. Sodium levels I guess are my first target.
If anyone has found followed a diet that they felt made a difference with the prednisone or MG in general, I will try it/them.
Thanks for the replies ..
SH