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Old 04-22-2007, 08:11 PM #4
Gabe Gabe is offline
Junior Member
 
Join Date: Sep 2006
Location: Minnesota
Posts: 94
15 yr Member
Gabe Gabe is offline
Junior Member
 
Join Date: Sep 2006
Location: Minnesota
Posts: 94
15 yr Member
Default Ivig

Hi Lois...
I have been diagnosed with Myasthenia Gravis officially for about 1 1/2 years but had been diagnosed and undiagnosed for a few years before that. I had my thymus gland removed last March and had IVIg for about two months before my surgery. I continue yo get IVIG every 2-3 weeks now. IVIg has been wonderful as far as giving me back my strength. I feel almost "normal" a few days after I get it. I have had a few issues with insurance and had to take a 6 week break mid winter and that was not fun.

The process takes me about 6 hours. I go to an infusion center at one of the hospitals and once I get there they order the mixture from the pharmacy - that takes about an hour and then they start the IV. I used to get it over 4 hours but now get it over 5 hours. The slower it goes the less side effects I get. They always give me Benadryl and Tylenol so that there is a lower likelihood of having a reaction. I have had at least 30 treatments and had one bad reaction...had a headache that lasted about a week. I have learned to be very well hydrated when I go in - I start drinking tons of water several days beforehand and drink lots of water in the days right after.

I recently had a port put in because it is difficult on your veins and it looks like I will be getting it for a while because it works. I take 150mg of Imuran daily and Mestinon. The combination of the three have given me the ability to plug through each day a little stronger. If your friend has any specific questions I would be happy to talk with them. If you want my number send me a private message and I can give it to you.
Gabrielle
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