70 gr IVIG in one day
In response to your posting of 10/30. I just wanted to respond that i get 70 gram in one day. The brand I use and find works better for me is GammaGuard. I go into the hospital as an out patient (as long as your in and out within 23 hours). I get there late afternoon, I am admitted into a room and by the time they order and get the IVIG up to the floor and get me set up with the infusion an hour passes. They check my vitals and they start with zolfran (?not sure of spelling), this is to help with nausea. They start the pump at a rate of 50 ml/hr. After a half hour, they check my vitals again. If I feel ok and vitals are good we increase the dose (increase depends on how I feel) usually 75 for another 1/2 hour, vitals again and increase to 100, 125, 150. I don’t usually like going over 150 but sometimes I went to 160 for a short while. The whole process the infusion lasts about 8-10 hours, depending how we do the increase. The infusion is finally done sometime during the early morning between 3:00 or 5:00 a.m. I then try to sleep a little and the morning I eat, shower and leave (sometimes I go right to work). I have no side effects at all.
Come December it will be a year since I was first diagnoses. My first treatment w/IVIG was mid december admitted into hospital (6 hr infusion each day for 5 days). Then in January I needed another round. (same 5 days). then every 2-3 weeks, I go back into the hospital for IVIG treat as I described above.
During one of my treatments in June, I had a heavyness in my chest and didn’t feel right. I called the nurse to lower rate, andcardiologist was called in and some blood, EKG and echo, they found I had blood clots in my heart. Next day after having an TEE (scope down throat to see heart) they discovered I had a hole in my heart and said that what they thought was clots was actually a mass. Following day I have open heart surgery to repair heart and remove masses. Surgery was success and I was up and about immediately. CIDP is worst then heart surgery. I am now on a blood thinner and continue with treatments.
Good luck and please keep me posted on your treatment. I would like to hear about your experience.
I am looking for information to find if anyone else who has had or having this course of treatment and if they have gone into remission. If so how long before they got that far. My doctor is against predisone so right now IVIG is the only thing I am doing. I just want to add that it does work for me. Usually on the 5th day after treatment I am recovered and feel perfect for about 1-1/2 weeks and the I start all over again.
Thanks for listening.