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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englishbutterfly 04/27/2013

My husband was diagnosed with MG on March 11th - about 6.5 weeks ago. It is bulbar right now - his chewing & swallowing & speaking are effected.
At the moment, he is taking 2 doses of mestinon a day- sometimes it works, but sometimes later in the day it doesn't. He has been on 25 MG og Imuran for the last 10 days.
We are a bit alarmed because of his swallowing ability, he has lost 21.5 pounds in a short amount of time & couldn't afford to lose any weight.
His doctor has said it would be fine if he took IVIG treatments& also up his dose of Imuran to 50 MG.
We are a bit frightened & wondering is this the right course of action so soon in the game. Can it make the long term effects worse when it wears off? Is it something to be used as a last resort, or is it a good idea early on.
We were thinking it might give him relief from symptoms & he could have normal functioning & try to regain weight, but we know also, that it can't be a cake walk. Any thoughts?

DebbieF777 04/27/2013

I have been on IVIG for more than a year. I do not tolerate the immunosuppressants well. I'm not aware of any reason to delay the start of it. It has greatly improved swallowing and breathing for me along with the use of Mestinon 4- 5 times a day.

Bamboolilly 04/27/2013

Welcome. I can identify with your husband. My 1st two neuro's delayed ivig, waiting as an experiment, to see if I got better after my thymectomy and on Mestinon only. My chewing and swallowing got worse. Ivig gave me back my life. Most recently, I went from bi-weekly to monthly ivig. My chewing has worsened so now I back to bi-weekly. I would STRESS that the benefits of ivig made all the difference for me. I'm also on Cellcept. Mestinon-4-5 x's per day plus timespan at night. I wouldn't delay treatment.
Good luck and be well,

vieve 04/27/2013

Imuran generally takes several months to kick in after you start taking it, so many doctors prescribe something else that works better in the short term, either prednisone or IVIG. If he has already lost as much weight as he can stand, it sounds like it's a good idea to do something to make sure he doesn't feel any worse. And if he can gain weight and get stronger, then he'll be able to deal with everything better.

I know many doctors prescribe IVIG in more emergency situations only, my doctor is like yours, it sounds like. I had pretty bad generalized weakness in my whole body about six months ago, then I started getting IVIG every month. I also was at a very low weight due to not being able to chew, and now I'm doing a lot better.

IVIG wouldn't make his symptoms worse when it wears off, but it (like Mestinon) treats the symptom and not the disease. I'm sorry your husband is sick, and I hope he's feeling better soon!

adamrach 04/27/2013

I get ivig every 3-4 weeks to keep me stable I also take the mestinon every 4 hours and then a timespan at night. I wonder if the neuro could also up his mestinon dosage and see if that helps. The ivig works really well for me. I am also on cellcept and prednisone.

englishbutterfly 04/28/2013

Thank you all to have responded. My husband & I have been very impressed with the great support on this site, & everyone's willing to help & share their experiences.
It was pretty scary when he was first diagnosed, & you all have been a wealth of comfort & knowledge.
Thanks, again

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