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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dktloans 07/24/2015

I have been diagnosed for 2years. Biggest problems are weakness in legs double vision and fatigue. Mestinon does nothing. I'm on 20mg prednisone and 150 mg inmuran Take ivig monthly. It does not work. Dr. Says next is plasma exchange. Anyone with a similar situation. I'm a 67 yo male.

ray2me 07/25/2015

I have not had a plasma exchange but I know some who have and say it works well . Good luck to you and sorry mestinin isn't working , Charlie

Steve0716 07/25/2015

Weekly IVIG works great for me, but I have heard from others that plasma exchange has done wonders for them. Hope you do well.

Steve

DebbieF777 07/25/2015

I get weekly IVIG as well. Plasma exchange works great for me, but in my case requires hospitalization because my blood pressure needs support even with preload of albumin and my doc only allows temporary access, so I go in and get my line put in and I have three treatments (one every other day.) She has now told me that I must have 5 treatments with my next stay, so I'm holding off for full blown crisis. 10 days in hospital when you're feeling well after 1st treatment is tough to take.

desertwindartist 08/02/2015

While other people have had good results with plasma exchange it did nothing for me. I had 5 treatments and declined the 6th. I hope you get results like most people, but we all respond differently and you will not know how it works for you until you try it.
Good Luck with it! Blessings!

limpnoodle 08/02/2015

Plasmapheresis is what works for me. Steroids made me worse and Ivig did nothing. I now have a permanent dual vortex port so I can get it outpatient. I had five treatments over ten days, and now on a maintenance regimen of one every other week. Seems to be helping.

Dktloans, have they checked for Lems?
It is commonly worse in the legs and doesn't always respond to Mestinon.

tediii 08/02/2015

I am 73 years old, and have been through similar symptoms. I have had the plasma exchange, and infusions. Mestinon does work for me, but it is only a temporary fix anyway like the plasma exchange and the IVIG. Ask your doctor (I presume he is a neurologist that specializes in MG) why he has you on such relatively low doses of Prednisone. If I was experiencing the symptoms you describe, my doctor would have me on 40MG of Prednisone a day. I am on 30MG right now and I am at 80% of baseline. Imuran did not agree with me, so I take 2500MG of CellCept daily.

Rhanson 08/02/2015

Sorry to hear about the problems you are having. Have you been tested for LEMS and for MuSK? Some types of MG require different treatments.

Good Luck

lilianwalkergolston 08/03/2015

I began plasma exchange when ivig stopped working. I've had one each week for nine months and it does work, but doesn't always last. The only problems I've had are exhaustion that day, and after a few months I started getting sensitive to the anticoagulant used to keep your blood from clotting in the machine. They fix that by adding even more calcium to the albumin they put back in you.

nanegg 08/04/2015

I agree with limp noodle and tedi. Ask them to check for LEMS. I have both LEMS and MG. the LEMS med works great on the legs. And, I'm surprised you're on such a low dose of Prednisone. I was on 60'mg/day for a year, and then 40mg!! Helped a lot, but get off it as soon as you can because of side effects!

Hope this helps and you're better soon!!!

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