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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newmugg 02/19/2011

I am starting plasmapheresis treatments on Monday. 3 x week on first week, 2 x week on 2nd week then 1 x week for a month, slowly working toward 1 x month. (I have previously been receiving IVIG every 2 weeks but it was beginning to be ineffective and also take 90mg mestinon 4xday)
Any advice for plasmapheresis? How do you dose your mestinon during initial treatments? Do I continue my current dose and times of mestinon? or start out at a lower dose? For some reason, I am more nervous about this procedure than IVIG.
My neuro and I have been reluctant to begin immunosuppressants due to invasive thymoma but if the plasma exchange does not work, she wants to put me on prograft.
Thanks,
sherry

catnap2 02/19/2011

Hi Sherry,
I had the same initial course of PLEX that you describe before my thymectomy. My neuro had me half my dose of mestinon the day of PLEX. He wanted me to take the normal dose (60mg) on off days but I found I only needed 30mg every 4 hours after the first day of PLEX. That lasted for about two months before my symptoms returned. Ask your neuro what the best plan would be for you. It worked really well for me, I hope it does for you too. The only side effect I had was nausea for a week. If you have this you should ask for anti-nausea meds. The worst part for me was the quinton catheter in my neck. I know some here have had PLEX with peripheral lines. Do you know how they plan to do it for you?
Cathi

newmugg 02/19/2011

Thank you for you advice Cathi. My neuro just said to take my mestinon based on symptoms but you know we all worry almost as much of an overdose as a crisis. They are going to try peripheral lines and am hoping it will work. I'll keep you posted.
~Sherry

catnap2 02/20/2011

Sherry,
I hope the peripheral lines work well for you too. I don't like it when the neuro doesn't recommend a plan but now you have an idea of how much I decreased my dose. I have noticed if my mestinon dose is too high I'll have muscle twitching within 20-30 min of taking it. Then I know to decrease the next dose. I really loved the results from PLEX and have considered asking my neuro to go back to PLEX instead of IVIG. Then this last week IVIG worked so very well that I have renewed hope. Please keep updating how you are doing.
Cathi

deleted_user 02/20/2011

Not to worry, newmugg. Just take your normal dose of Mestinon. Mestinon metabolizes so quickly and the PLEX takes days before becoming effective that the two therapies will never cross paths to conspire to cause an overdose. Do not be anious about this. PLEX has a marvelous effect on MG symptoms.

Three years ago I inadvertantly took about 20 Mestinon pills (I confused the vial of pills for my normal morning vial). I went to the ER on the advice of a buddy I was staying with at a wilderness lodge (he is an internist). I got to the er just in time for the fireworks! Wow, does that stuff do a number on you when you REALLY overdose. But it was sort of fun, titrating it with atropine. Every time a shck wave hit, we'd inject a little more atropine IV. While I would never OD intentionally, the experience did teach me how manageable Mestinon is in an overdose situation. And 1200mg of Mestinon is way more than the 90 or so you're talking about. You will have NO problems at all.

Just calm down. You're going to be just fine. After the PLEX, you;ll be like your old self. Been there, done that.

Curt

deleted_user 02/20/2011

Hi I have just finished plasma exchange x3. I did not change my mestinon and mestinon timespan regimen during the treatment and everything was fine. It worked very fast for me, after the first exchange I was able to swallow and eat. But I have now come off this and gone with the immuno suppressants as the plasma exchange has a varied time span. Good luck, its an easy process no problems.

Colin - Chicago

newmugg 02/20/2011

Thanks to all of you. I feel much more confident going in....just did not want to be surprised.
Hope everyone has a great and easy MG week,
~Sherry

AshBash001 01/06/2019

I know this post is fairly old, but I wanted to post the link to my recent experience with plasma exchange,

https://youtu.be/cD8SlrlnJB4

I hope this helps anyone looking through older feeds. (:

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