Thread: plasmapheresis
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Old 07-18-2011, 09:58 AM
Tracy9 Tracy9 is offline
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Join Date: Dec 2010
Posts: 166
10 yr Member
Tracy9 Tracy9 is offline
Member
 
Join Date: Dec 2010
Posts: 166
10 yr Member
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I've been wondering when plasmapheresis is indicated. I was in the hospital for a week about two weeks ago with an exacerbation. I can see my MG has definitely gotten worse over the last few months. I'm having great difficulty being in any position other than lying down. I can't hold up any parts of my body for long. I can't ride in the car, or sit up at all for long without pain and strain, and paying for it later.

I'm having much more trouble eating, chewing and swallowing takes forever. Just for the heck of it, I counted how many times I have to chew a bite of a soft turkey sandwich before I can swallow it and it was 65 times. This was because I noticed my family can pretty much eat the whole sandwich in the time it takes me to eat two or three bites. Things just aren't working right anymore.

My hands are so weak most of the time I can't even pull the microwave door open or hold a plate of food. I can't squeeze toothpaste out, or shampoo. My hands and arms get fatigued from typing. I can't hold my head up so I'm always in bed.

I get IVIG every other week for two days. I am on Mestinon but can't tolerate much of it or I get side effects; twitching, my tongue stops working, and I can't talk right. I can only take 60 mg 2-3 times a day.

I don't want to try Prednisone or chemo drugs if I don't have to, nor does my neuro want to give them to me. I was thinking maybe plasmapheresis might be a next step?

I'd also consider getting my thymus out but my neuro wants to wait for the results of this current 5 year study before he refers anyone for a thymectomy. I was thinking of going for another opinion on that one.

What do you think about plasmapheresis/thymectomy? I want to avoid more drugs at all costs. I already take a TON of meds for many other things.
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