Is there research that says how many days ivig should be given?
AnonymousJune 17, 2006 at 10:06 pm
Is there data (research) that supports how many days the infusion shoud be given?
It seems like everyone is getting ivig treatments for a different number of days. The dr. we first saw in Birminham does 5 days but our dr. now does all in one day, lasts about 6 hours from the time the ivig is attached to the arm. Our course our child weighs 21 lbs and gets 200 ml.
There are so many things you have to guess with when a person has CIDP, ie which treatment to do, how often, which brand and how many days it takes for the infusion. It’s all driving me crazy.
AnonymousJune 17, 2006 at 11:16 pm
How long the infusion takes depends on the number of grams infused, the rate of infusion, if their are any issues during the infusion etc but it really I think it depends on the person. The only time mine has ever been more then one day was the very first set of infusions after onset of CIDP, they were over several days. Since then the only thing that has ever changed has been the time between them, usually every 4 weeks but this can be different for everyone, also the number of grams varies depending on weight.
Perhaps there is a different protocol for different brands but I have had most all of them Panglobulin, Carimmune,Gammaguard, Gamimmune, Gammunex and maybe others since I also recieved IVIG for something different in my late teens and early twenties. But even with all those different brands it was always one day and the number of hours varied depending on the grams I was getting and the infusion rate. I hope that helps.
AnonymousJune 18, 2006 at 10:27 am
I don’t think that there is any research on this subject. Most people get either 2 or 5 consecutive days after 1st being diagnosed. Then they are put on a maintenance plan.
My daughter is unique, I think, in that she needs to have 2 infusions a week just to keep her eye normal & not paralyzed. We are hoping that once we can get her eye strong again that we can decrease the frequency of her treatments and eventually get the CIDP to go into remisssion.
With CIDP the treatment plans vary from person to person & dr to dr. There is no 1 way to treat CIDP. You just have to find out what works for each individual. It’s a very frustrating guessing game.
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