Thank you so much for your replies! I’m learning a lot but mostly to be patient! So difficult when you want so much to be well!
I wanted to go back to work and get off disability because it’s so hard to live on the pittance they give you on disability! I can’t though because I would miss five days of work for my infusions then another 2-3 days from being sick from the infusions! Geeze! Who the heck will hire me with that record? So frustrating!
DocMac, do you live in the United States? If so I may try to get mine done in the hospital. When they set the flow at. 7-8 hours I do okay but now they have it going in at 4.5 hours and I know that’s why I get sick. They give me IV benedryl and Zofran but neither helps at all! Nothing helped my vomiting. I had Zofran, Reglan and Phenergan and I STILL threw up every time I moved at all ! Even if I just moved my leg or arm I threw up. So miserable. On the positive side I get three weeks of feeling pretty good where before I felt awful all the time. I even get energy! I have been diagnosed with RA, Lupus, Vadculitis , osteoporosis and CIDP. The IVIG helps it all thank God!
Anyway, thanks for all your input!