Change in IVIG amounts
October 29, 2007 at 4:13 pm
Hello All! I’ve been gone off the boards for a while but I’m playing catch up. Since the boy was born last September, I began having more and more problems with my hands. It started during the pregnancy and continued to get worse. I did PT and OT and they both helped but did not get me back to where I want to be.
I finally saw another specialist to help me with my treatments. Previously, I was going every four weeks and getting 50 g of IVIG. I would have a week of headaches and flu-like feelings after each treatment.
Now, she has me going every 3 weeks with only 25 g of IVIG. Wow!!! What a difference! I still have that odd feeling as my body decides what to do with all this foreign IV the first day. But I have more normalcy in my everyday life which is what I was desperately needing.
I was really doing well and then my father-in-law’s passing last month took a toll on me. I thought I was doing everything right but I ended up dropping down to 92 lbs. This started to really affect my health. Luckily, I’ve gained back 8 and started feeling normal.
I don’t cry anymore when I know I have to go for treatment (knowing I was going to have a week of side-effects used to really get me down). I’ve just finished the costumes for the season and our family is ready for Halloween!
I would never have thought changing the dosage would make all the difference but I’m just thrilled that it did.
Glad to see the familar blue board and that the family is still here:D
October 30, 2007 at 10:27 am
I wish we could still post links…the kids’ costumes really turned out great this year. Even the youngest has a costume this year!
AnonymousOctober 31, 2007 at 10:44 pm
I have just gotten my IVIG and have a suggestion for you. When I start the flow rate is at 30 for the first 15 min, then 71 for the next 15 min then 120 for 30 min and 212 for the rest of the time(about an hour and a half or two maybe.) We worked this formula out over time, and it seemed to help by slowing it down. I used to go every 4 weeks for 3 days, now I go 3weeks for 2 days. and receive 25 g . Some other patients get premeditated in order to prevent the problems you are experiencing. I hope this helps.
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