Current question

July 10, 2008 at 11:43 am

Hi Dawn, Saw my doc’s PA yesterday instead of him as I request, anyway his office called back 4 minutes before close what my doc wanted and didn’t want to do. Changed my home ivig to 45gm X 2 days every 2 weeks and he said no to slowing the infusion even though I was symptomatic, reason being that he likes to go with protocol! I was upset and immed. hung up and called my infusion co. They said they would call today after they were faxed the orders. I was prepared to change co. if I had to and write Jirimy for a list of neuro docs closer to me than U of M, and I may still do that. The co. did call me this morning and made arrangements for the ivig and she said they would infuse it at the rate I requested over 4 hours instead of the 2 hour protocol. So one hurdle jumped. Wondered if this seems like a continued loading dose for me? The PA was vague on that issue when I asked her. She said I was a combination of relapse/remit and progressive when I asked her. Vague when I asked her about premeds, so in summary I left there frustrated but hopeful she could check with doc and she said she would call me back. She didn’t, the office receptionist did!! So I’ll ask for your help and anyone’s at this point. Will try the every two week schedule and see if that makes for no down time, but how many days do you premed Kevie before the ivig, during, and after? And you use Tylenol, Bedadryl, and Aleve? I was using the Motrin during, but will try anything that helps me avoid those headaches! And do you hydrate with water, or anything else? Thanks so much. Emma