CIDP diagnose confirmed

February 14, 2007 at 8:10 pm

I was able to go to UCI and see Dr. Taseen Mozaffar, the Director of the ALS and Neuomuscular disorders. I feel very blessed for that. I had all the tests of emg, ncv,lumbar puncture and blood tests for minerals and heavy metals. The lp had elevated protein levels which helped to confirm CIDP. I had my second IVig yesterday and was once again wiped out. The IV’s are administered at the patient’s home once insurance is approved. We had to speed up that approval process a little bit as well thanks to my negotiating husband.;)
I am getting Gamunex and the 2nd time the R.N. questioned the use of Sodium Chloride with it for hydration as the literature says it is not recommended due to a “binding factor” (whatever that means) and treatment may not be as effective (I also don’t know if the first treatment therefore was less effective).

Two Questions:
1.Has anyone heard of this Ganunex should not be infused with Sodium Chloride but Dextros?

The next treatment next week the pharmacy will be sending Dextrose with the Gamunex.

Also, I had the side-effects of chills, headache after the 3 hours of infusion and a terrible back ache. The first time and the same after 4 hours infusion rate the 2nd time.The nurse said it could be infusion rate or toleration of the brand suggesting Gammaguard for the other option.

2. How does one decide (with the physician of course) to switch brands? Does one develop a tolerance after more infusions? I’ve also put my questions into my drs. e-mail.

I am scheduled 2 x’s a week for six weeks and 1 time a week for six weeks thereafter.

Thanks for your thoughts,