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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jen0517 07/26/2014

Hi, I'm Jen and I've had MG for almost 30 years. I was diagnosed when I was 19. The first 10-12 years with the disease were not too bad, but the past 15 years have been more difficult.

I'm MUSK positive and had been fairly well controlled on weekly plasma exchange. But I've been experiencing shortness of breath more and more often. I was recently hospitalized for a little over a week due to severe shortness of breath. After 6 plasma exchange treatments in 12 days, I'm still weak. My neuro has decided that plasma exchange isn't working well for me anymore and wants to move to Rituxan.

I'm a pharmacist and have researched Rituxan and I agree with his choice and I'm familiar with the drug. I'm looking for support and insight from other patients who can relate to my struggles.

It's been tough dealing with this for so many years and I get so tired of fighting sometimes. I'm married and have a wonderful, supportive husband and a 13 yr old sonand 2 crazy golden retrievers. I like to think of myself as fiercely independent and it's hard to admit that I need help. Thanks for listening.

Jen

limpnoodle 07/26/2014

Hi, Jen. Sorry you are struggling. I have refractory Lems and am currently getting a round of plasmapheresis, which will be completed on Monday. It really helps me a lot, but does not last long. I had Rituxan in December, but B cells are still not showing up, so my doctor started me on Cellcept and the plasmapheresis, so I can hang on till I can get Rituxan again. Make sure if you do get rituxan that you get premeds. I had solumedrol, Tylenol and Benadryl. I had a slight allergic reaction when they raised the speed halfway through the first treatment. They had to stop the infusion for thirty minutes and give me a bolus of Benadryl, but I quickly got better and continued the infusion at the previous rate with no symptoms.
Improvement started almost immediately but only lasted a very few months. This was the only treatment that has corrected my swallowing problems.
I understand about the fierce independence. That is me, too. I have had to come to grips with asking for help, which goes against my very being, but at his point, my survival depends in it.
Hope you get your rituxan and that it works miracles for you.

deleted_user 07/26/2014

Hey jen! Well first off if your looking for support and someone to listen and give advice you have definately come to the right place!! This group is the best thing that has happened to me in quite some time..Its people that actually understand what you are going thru...MG is a tough disease for sure..Just when you think things are going pretty good, bam, something else hits ya..Its our roller coaster ride Im afraid many ups and to many downs!! It sounds as though you have a wonderful supportive family...You are very lucky there! Hey also having a pharmacist in our midst will be so helpful to us all and bet it helps you to at least know what the heck you are taking and side affects etc..! Good luck with the Rituxin, I have never taken that so dunno how well it works but many have here so Im sure they will be giving you their take on it...I have had MG for almost 7 years now and basically started with ocular and fatigue of course....Started with taking mestinon and prednisone, then got thymectomy and things went pretty well after that for a long time....HAD to stop mestinon, caused way to many stomache problems, ended up getting gall bladder out etc etc..So now just taking prednisone...But side affect not fun with that so my anxiety and fogginess etc is bad...Especially after so many years of taking..But must take what works..Now I do notice though some pains and aches in leg and neck past few months so concerned about that so will be telling neuro...But guess the jest of of this is we never know from day to day really what will be with this disease..And I too get tired of fighting it and tying to be normal per say!! So you are not alone my friend! We are all here...Hope your Rituxan helps for you and keep us posted....Welcome and we are here to listen always!!

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