I attempted to do the IVIG for my MG one week ago. After the third day had a very negative reaction and they stopped the procudure. The doctor said I was having anaphalatic reaction put me on steriods and I think predisone. What I still have is one or two times a day very intense feelings in my upper chest, almost like fluttering or like I have had 5 monster drinks. Anyone else ever had this and in general what were your post procedure results or experience. Thanks

Hi. I'm sorry you had a reaction to IVIG. I'm glad they were able to figure that out right away.

Do you have a good internist? You might need a chest x-ray and an ECG just to make sure either the reaction or the pred didn't do something to cause yet another reaction! Some people can get fluid or inflammation in the lungs or get arrhythmias of the heart from drugs. I think a call to your internist/primary doctor is warranted. If things get worse, go to urgent care or the ER.

Sometimes it's the batch or brand of IVIG that can cause anaphylaxis. Since they can't know for sure, it would be a huge risk to try it again. Do they have other options for you? I've never had IVIG but others have and I'm sure they'll have suggestions for you.

I hope you feel better.

Annie

I have been on Mestinon for about 4 years but recently began having breathing issues so that was why the move to try IVIG.

I am hoping that by going on these boards I will also get the more practical side to dealing with MG.

It took forever to get a diagnosis and while I think I have had some good Dr's the language they speak is just frustrating and always clinical.

So thanks and hello and looking forward to good advice!

I have never had a bad reaction, but am given benadryl and tylenol before they start.......were you given any of those things?

Unfortunately some people just don't do well on IV IG, but they do respond to the plasma exchange....you may want to ask about that....

Hope you feel better really really soon!
Big hugs!
Erin

Immidiate sleepiness!!! Wish that would happen at night! Did not seem to help with the reaction but I will ask about the plasma exchange on next appointment!

Thanks

So sorry you had a bad reaction, I've only ever got one migrane(I've had 4 IVIG sessions), and I think that was from the chair I was sitting in for 8 hours.
take care
Kate