Hi All, Well it has been 23 days since I was released from the Hospital after my 5 day loading dose of IVIG. the treatment worked well for me with very little side effects other than headache. I still take 60 mg of Mestinon every 3 hours and 40 mg of Prednisone daily and I have been able to return to work part time. Two days ago I began with a sore throat and now have a horrible cough and My MG symptoms are the way they were before my IVIG. I am beginning to feel the weakness returning including vision issues. I am not sure if the effectivness of my IVIG stopped or if the virus just caused me to feel weaker? Does IVIG make you more open to infection? I work as a counselor in a very rural area with individuals that do not have great access to medical care?

IVIG actually helps with immunity as it contains the antibodies of hundreds of people who donated their blood to make it. It, however, isn't foolproof and infections do occur, especially since you have pred on board.

As you are learning, or already know, infections can make MG unhappy. The IVIG is still there, but would naturally be starting to "run out" of activity since it's been over 3 weeks since you received it.

I would suggest you give your doctor a call so this can be documented. I suspect you will be looking at adding another immune suppressing drug, such as imuran or cellcept eventually, as most with moderate-severe symptoms need that if any chance of work oriented life is desired.

Sorry you are feeling badly. Hang in there!

Thanks so much for your advice. I will be seeing my Neuro today for the first time since I was released from the hospital. I was in remission for 16 years before my relapse with MG. So this is all new again for me. thanks so much for this board!!!!!!

My guess is the virus. When I get sick my MG really goes down hill.
Mike

lisa;

Did your neuro schedule more infusions?

If your virus is better, do you feel better overall?

I always have worse MG symptoms when I'm ill from something else. Even a cold sore.

Hope that's the case with you.

scrubbs

Lisa
When you said 2 infusions is that 2 bags, over 2 days? Do you know what actually you received (details?) same brand each time?

(I took pictures of the bag and labels to have to refer to later) Mine was Baxter brand 10% 35,000 mg (350 ML) daily for four days. I am so far responding well to IVIG and will be going to my neuro on the 15th, expecting to get setup for monthly treatments. My impression is best to try to keep with same manufacturer, is that your understanding?

If you are up to and can/will, please post update how your follow-up goes. I will try to do likewise as I think the information is helpful for not just you and I but for others to follow...thanks!

Stephanie

Hi Scrubbs,

Yes Dr. Ginsberg has scheduled two more one day rounds of IVIG and the visiting nurse will come to my home. my insurance has approved it but have not yet scheduled the infusion. Hopefully I will hear something before the weekend. I am feeling slightly better since I finished my med for an upper respiratory infection, but still having weakness.

Lisa

Hi Stephanie,

I will be having two bags in two days. I didn't find out what brand they used in the hospital, I wish I had. I will try to find out the brand before my next infusions. Insurance has approved but waiting for the visiting nurse to schedule my home infusion.
Lisa