Ivig

General General CIDP Discussion
1

hello,i'm suppose to see my neuro tomorrow for a follow uo on my last 2 mri i have cidp.my problem is i just got a call fromthe hospital telling me they are trying to get approved for ivig treatments for for 6 hours a day for 5 days in a row WTF......that was a shock to me cause from all the things i have read i do not like what i'm reading,and isn't that too much to start out on for the first time ? i still have not gotten approved yet for ssdi, which has been well over a year,just confused and would appreciate it if i could get some feed back on this........thanks,DAVE

2

Hi Dave,
If this is your first ivig infusion, it’s typically a 5 day loading dose the first time around. They’ll start at a slow drip and should increase the speed if you can tolerate it.
Drink lots of water too. Headaches seem to be the most common side effect. Hope this helps! Good luck!

3

thanks

Jmlz said:

Hi Dave,
If this is your first ivig infusion, it's typically a 5 day loading dose the first time around. They'll start at a slow drip and should increase the speed if you can tolerate it.
Drink lots of water too. Headaches seem to be the most common side effect. Hope this helps! Good luck!
4

Has anyone here ever hear of www.rareshare.org Gary

5

I started my IVIG treatment 3 months ago. I had it 5 days in a row every month for 3 months. I now go back to the doctor to see if there is improvement before I continue. Just an FYI, the hours it takes to infuse really doesn't tell you how much medication you are getting. Like Jmlz said, they start out really slow on the rate and then increase it if you can tolerate it. My dose is 0.4 gm/Kg given over 3 to 5 hours per day for 5 days. I also have SSDI but I was approved in a matter of days so I'm confused as to why it's taken you so long.

Good luck and keep us posted on how your doing. Laurie