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,
I have MG, but not the ocular kind. Male, mid-forties. No thymus issues.
At any rate, Mestinon did zilch for me -- it did not help my shortness of breath or weak shoulders. I had dermatitis last month, and took two rounds of prednisone over the course of about 6 weeks. The highest I got was 40 mg per day. It was one of those 3-week taper packs. I felt best when my dose was between 20-40 mg.
The prednisone improved my quality of life. Muscle and general fatigue gone, energy up, and sleep much, much better. I concluded my second round of prednisone, but after a few weeks, my MG symptoms seemed to come back a little bit.
I had my 6-month followup today with my neurologist and told him my experiences. He gave me a script for 10 mg of prednisone every other day.
It seems most folks taper up to a dose of 30-60 mg of prednisone, then begin a slow taper to a lower, every other day dose. Is starting treatment fresh on a 10 mg EOD maintenance dose a good way to do it, too?
Is it worth my time to try this maintenance dose, or should I be pressing for a more traditional taper up/down before the maintenance dose is initiated?
Thanks!
I have MG, but not the ocular kind. Male, mid-forties. No thymus issues.
At any rate, Mestinon did zilch for me -- it did not help my shortness of breath or weak shoulders. I had dermatitis last month, and took two rounds of prednisone over the course of about 6 weeks. The highest I got was 40 mg per day. It was one of those 3-week taper packs. I felt best when my dose was between 20-40 mg.
The prednisone improved my quality of life. Muscle and general fatigue gone, energy up, and sleep much, much better. I concluded my second round of prednisone, but after a few weeks, my MG symptoms seemed to come back a little bit.
I had my 6-month followup today with my neurologist and told him my experiences. He gave me a script for 10 mg of prednisone every other day.
It seems most folks taper up to a dose of 30-60 mg of prednisone, then begin a slow taper to a lower, every other day dose. Is starting treatment fresh on a 10 mg EOD maintenance dose a good way to do it, too?
Is it worth my time to try this maintenance dose, or should I be pressing for a more traditional taper up/down before the maintenance dose is initiated?
Thanks!
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
Mary.
My doc told me I would likely have to get to 60 mg to get remission and likely have to stay at that a while and then would have to begin the long process of determining the minimum effective dose for me, by tapering back and seeing what happened.
The doctor can't do this for you as well as you can for yourself--but you really need to educate yourself to be on top of your treatment.
Good luck!
-sherry.