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...

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breathing

drakeford1968
drakeford1968
my doctor told me i look like a million bucks right . he also told me if i wanted to stop taking my Pyridostigmine it's up to me and i tried it .now my breathing short again.i'm on albuterlor , prednisone and fish oil .oook guys .WHAT SHOULD I DO?
txkiki53
txkiki53
well, logic tells me that you need to NOT stop the Pyridostigmine if you are having the breathing issues again. Call you doctor.. good luck to you
Annette
deleted_user
deleted_user
If you are having breathing issues, you need more than Mestinon. You need to stay close to your phone, your doc and an ER and you need to be taking enough steroids to put this symptom down. How many mg of prednisone are you on and how much do you weigh? Are you going on CellCept or Imuran? If not, why not? Have you done PLEX or IVIG?

This symptom needs more than fish oil...

Curt
drakeford1968
drakeford1968
im on 55 mg of prednisone .i had ivig twice and all that other stuff dont work r it take up to a years to work .i think its time for a ivig treatment. breathing get shorter by the days . im 218 lb .this is y dr want me of prednisone
newmugg
newmugg
So sorry drakeford. It is amazing to me the difference in treatments we receive by each of our doctors. Unless you are in remission, I would not stop taking mestinon. It's funny that some of you are on albuterol and some have been diagnosed with COPD (just an observation). I wonder if it's because those docs are not familiar with MG and think the breathing problems are lung related, not diaphragm related.
Is there a teaching medical center somewhat close with an MG clinic? I would contact MGFA and find a doctor that takes your symptoms seriously. One of the hardest things about this disease is finding the right doctor to treat you.
Good luck,
~sherry
deleted_user
deleted_user
Yes, I would go with IVIG. At least it's a place to start and a treatment that can be effective. While it does take Imuran and CellCept a year to work, it takes a year from the day you start, so there's no time like the present. You don't want to stay on 55mg of prednisone forever and, as you can clearly see, it isn't even eliminating your symptoms completely at that dosage level. You might need 80 or 100 mg to do that. Imuran and CellCept are "prednisone sparing" drugs. This mean that as they start working, you can start tapering off the prednisone. While I used to take 80mg of prednisone, Ive been at 5mg for about 2 years now, thanks to Imuran.

Curt