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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MG Update

blinkngone
blinkngone

Hi Everbody,


 I was diagnosed with MG back in December and had been taking Mestinon 5X's per day. It worked well until March but I had been losing strength, eye control etc.. I went to my Nuerologist and discussed trying plsmapherisis because I might also need kidney stone surgery in a couple of weeks. I had a permacath installed last Wednesday and Thursday my first treatment using Albumin was attempted. About 1 hour into the treatment I stopped breathing, some kind of rare allergic reaction. There were 20 very kind people from the hospital crash team and they were able to save  me. Saturday we tried another treatment substituting Plasma for Albumin and again about 1 hour into the treatment I started having breathing problems but it wasn't bad enough for me to stop. After another rest day we tried another treatment Monday and again about 1 hour I had trouble breathing again, worse than Saturday, but after about 15 minutes of difficulty I was able to breathe easier. I had my thumb on the red abort switch and almost pressed it. The team had loaded me up with Benadryl and Prednisone to try and stop the adverse reactions but what concerns me is each modified treatment even with precautions seems to increase the duration of breathing difficulty. My Doctor says it's a mystery. I have to get with my Nuerologist and come up with a plan but I am really confused right now, any ideas would be appreciated.

xmas25
xmas25
I'm soo sorry you went through such an ordeal!!i had phersis for 6 yrs with no issues. Glad they were so alert to reation. No advice,never heard of severe reactions from my nurse. Take care!!!
limpnoodle
limpnoodle
What type of breathing difficulty did you have? I have plasmapheresis regularly and the thing that causes me to stop breathing is lack of calcium infusion throughout the entire treatment.
I have Lems, which means the antibodies block the calcium channels. The citrate they use to keep blood from clotting while outside the body does so by binding calcium, so I have a calcium shortage during treatment. I get 2 grams per treatment because the original one gram is not enough to compensate.
This causes tetany or rigidity in my muscles and my diaphragm stops moving.
Could this be your problem?
I have no other issues with plasmapheresis, but tend to obsess over watching to make sure the calcium is up and running and hasn't run out.
blinkngone
blinkngone
Thanks. They are using calcium on me, it was supplied in a drip through my IV. It seems to be similar to your experience limpnoodle but my Dr's don't seem to understand the problem. I have an appointment today to discuss options.
limpnoodle
limpnoodle
Calcium is what allows acetylcholine to be released.
Some people have very little problem with this, but I happen to be one who does, and it is quite dramatic.
The amount and rate of calcium infusion are very important. When I first started getting treated, the blood speeds were much higher through an external tunneled catheter, so the calcium rate had to be quite high. Now that I have an implanted dual vortex port, the blood speeds are slower, thus, the calcium drip rate can be slower to match this.
Anytime they let the calcium rate drop too low, or let in run out, I was in trouble.

You may only need some tweaking of amounts and rates to fix this. Best wishes for a good and effective treatment.
blinkngone
blinkngone
I have had 4 plasmapheresis treatments. The first one failed with albumin. I had 2 treatments with ffp and made it through both with just a little difficulty. Yesterday they attempted another treatment with ffp but substituted heparin with a diiferent blood thinner.. I made it most of the way through but with 2 bags of ffp to go I again had a severe allergic reaction with breathing difficulty and head to toe rash. I was wheeled to the er and treated with more prednisone and Benadryl and other stuff and after 3 hours the rash finally subsided and the breathing treatment they gave me helped ease the pressure on my lungs. I have another treatment scheduled for tomorrow but with 2 failures out of 4 it is somewhat disconcerting. I feel bad for my wife who has witnessed these events especially when she hears the staff saying they thought they lost me. I will talk to my neurologist but I am feeling like a guinea pig, I didn't want to switch from the heparin but was overruled by the nurse and Dr. in charge of the infusion center so I am not sure I can go through another treatment.