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 new to General MG, having had just Ocular MG for 35 years before it went general.
If I feel remission coming (it's slow, but I can feel it) should I begin to taper off Prednison, or stay at my current dose until remission arrives - hoping it does - and then start the taper?
I am on 10 mg Prednison daily.
Thank you.
If I feel remission coming (it's slow, but I can feel it) should I begin to taper off Prednison, or stay at my current dose until remission arrives - hoping it does - and then start the taper?
I am on 10 mg Prednison daily.
Thank you.
You could drop to 9 one day a week for a month and see how that goes. Do you 10 the other 6 days.
That is how I do it.
I have tried for years now to get below 6and I just haven't been able to.I get sick about 2 months after I after I drop from 7 to 6 only one day a week.
crazy but I am due to try gain.
7 every day seems to be my best level.
Now I am just sick of cellcept. My doc says no to going off that till I can get down on prednisone.
oh well
1. Will MG return as I drop lower -- and since prednisone is somewhat delayed in action you stay at each drop several weeks to see if it returns.
2. Will my adrenal glands restart after having been suppressed by prednisone and how do I know if they have or haven't started to produce the sort of natural prednisone (cortisol and various other useful stuff). The adrenal gland suppression is why we just can't stop prednisone after we have been on it more than a week or so. Adrenal insufficiency can be more than just painful, it can be life threatening, so we have to be pretty cautious!
It is somewhat complicated to decide if MG is returning or we have adrenal insufficiency (even if it is mild) happening as we taper. You should read very carefully some reputable website info-- search on the three terms: prednisone taper adrenal to find more of the symptoms. Mayo, WebMD, John Hopkins, and other institutions with decent reputations are good places to read along with the MG foundation.
My doctor suggested switching to alternate day prednisone as a better way of tapering than just dropping on every-day prednisone. She thought that would give the adrenals more stimulus to start up having a gap in the prednisone dose.
My taper was somewhat different than most folks. I went from 30 mg per day to 30 on alternate days for a few weeks until I was sure that I had no MG returning. Then I started every 3 days at 30 for a few weeks and then every 4 days and then every 5 days (yes my doctor thought it could work).
When I finally stopped taking prednisone, I had a few months of aches and pains that went away with aspirin (or regular pain killers) so I knew it was the adrenal glands not quite fully kicking in. Eventually and gradually this all disappeared. However, I was one of those rare 15% who go into remissions of varying lengths. I am 2 years med free right now.
Living at 10 mg prednisone is probably not too bad. My mother did it for 30 years (from her 60s until dying at age 91) for an autoimmune disease.
My doctor wanted me to begin cellcept or Imuran as I tapered prednisone. I had what is called medication induced remission -- meaning prednisone got rid of my MG symptoms fully. I wondered if I might be in the lucky 15% who were in a real remission that would not require any medication. The only way I could find out was to go completely down to zero and, if on the way MG came back I would know I was not. So I took a chance and did not start the alternate medicine and tapered off prednisone and did find I was in med-free remission. I figured I could always quickly go back to high doses of prednisone to get MG back under control and then restart the taper to lowest effective dose.
Good Luck and be careful and read about the adrenals