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 have been home for 2+ weeks after an MG crisis that had me in ICU for a week. Thankfully, I didn't have to go on the respirator, and was kept from getting worse with the Bipap machine, and 5 rounds of IVIG. Since Mestinon was making me really sick, I can no longer take it, so until I can go to see a specialist at the teaching med center in 10 days, I'm on 60mg of prednisone a day.
The question I'm hoping some of you all can weigh in on is how long it's taken you to recover after being in crisis, and/or having your first IVIG treatments? Every day I expect to feel a little stronger, but I'm only staying about the same, which is quite weak, even though I'm not working, I have help at home, and I'm doing my best to rest.
Can the high dose of prednisone be causing the weakness, or am I just expecting to recover more quickly than i should after a crisis?
Thanks for your input as always. The love, care, and good advice you all share sure has helped me feel a little more sane these last several weeks :-)
Tamara
Tamara
The question I'm hoping some of you all can weigh in on is how long it's taken you to recover after being in crisis, and/or having your first IVIG treatments? Every day I expect to feel a little stronger, but I'm only staying about the same, which is quite weak, even though I'm not working, I have help at home, and I'm doing my best to rest.
Can the high dose of prednisone be causing the weakness, or am I just expecting to recover more quickly than i should after a crisis?
Thanks for your input as always. The love, care, and good advice you all share sure has helped me feel a little more sane these last several weeks :-)
Tamara
Tamara
They kept me in hospital after crisis for 5 days to check for negative reaction.
I had negative reaction in 10 and went back into hospital.
It took me a year to feel recovered.
I know 4 months after my crisis i was sleeping all through a family reunion.
This definitely isn't a picnic.
It was really slow recovery.
It helps so much to know that you have both experienced challenging recoveries too.
I keep thinking I should bounce back faster, but that's probably because I've never gotten quite as sick as I've been this time around....I just need to be a little more patient I guess, and trust that healing will come as I rest and get a good treatment program
Here's to better days ahead for us all :-)
Tamara
Hope you have a better day
Wellness,
Some thoughts about going through a MG crisis. Sorry if I ramble a bit. You and I have a lot in common, so there is a lot to share, and I am afraid I will miss something important.
One of the more important matters, right up front. Anyone like yourself, who has been through a MG crisis? You sound like a good candidate, for the IV-Therapy of Rituxan (or Rituximab, the generic I receive). It is being used in "refractory" cases of MG, more and more often. Talk with your Neuro, as there are very encouraging medical journal reports on its use in hard cases of MG, both in the US and in other countries.
Also like you, I could not take Mestinon, as it aggravated other neurological problems. And also like you, I was on Prednisone 60mg.
Other meds, such as Imuran, Cellcept: I could not take. They caused my blood counts to quickly crash.
After my intubation, intensive Plasmapheresis pulled me back from the brink. This was followed by a lot of IVIG. Yet just like you described? These therapies only seemed to kept me barely afloat.
Then: my Neuro decided it was time for Rituxan. And it has worked well for me. It is also working well for others on this forum.
Recovery-time, after a MG crisis: on the down side, it's something to slog through, recovery won't come quickly. Just try to do a little more, every week, being careful not to make matters worse. You want to preserve some strength, for the breathing & swallowing muscles.
On the plus-side: wow you are in good control of your mental faculties. That's a very good sign.
Even with therapy, it will be months yet, before you can get a feeling of solid recovery. Even with Rituxan, I was 3 months before I realized: okay I'm not getting worse. So the doctor ordered a slow taper, on the Prednisone. At 6-months, I began to feel better, even before I received a 2nd round of Rituxan. At 9 months, I was definitely better, continuing to taper Prednisone. Now with the 3rd round of Rituxan, I continue to improve, down to 3 mg of Prednisone.
So hang in there, Tamara - hoping & praying for your continued recovery! - Ross
Ross, I really appreciate you taking the time to describe your recovery process. It helped give me a much better idea what I might be looking at in terms of a time frame. I haven't really seen much improvement from the IVIG, so I'm hoping that when I go to see the specialist in a week, that we can discuss the option of Rituximab or Rituxan.
Unfortunately, because I'm seronegative on both the AChR and MuSK, my regular neurologist is sending me to the specialist to be sure that he agrees with the MG diagnosis......ugh! I've spent years getting a diagnosis, so I just hope treatment doesn't get halted while the specialist starts looking for something other than MG. Hopefully, he'll be quick to figure it out and help work out a treatment plan that doesn't consist solely of prednisone.
No matter what happens, I think I'm finally getting it through my sometimes stubborn brain that this recovery process might take a while.....and there's not much I can do about it other than to rest and follow the doc's orders.
Blessings to all of you for the advice and support!
Tamara