Many thanks to all of you; this forum is a great support. I have an appointment with my neuro tomorrow and I am preparing for a detailed discussion with him. I must say that I have good faith in him. His decision to prolong the gap between infusions was a judgment call but he is willing to experiment with the protocol to calibrate it to my needs and med insurance is not an issue. From your notes, I have learned that:
1. Although loading IVIG dosage (2 gm/kg) is pretty much a standard but it can be infused in a shorter period. In my case, it was infused over 5 successive days. But some of you have taken it over just 2 or 3 days.
2. The maintenance dose (quantity and duration) would vary depending on the patient’s condition. In my 1st protocol, two loadings 6 weeks apart worked well. I will now take three loadings 4-5 weeks apart and also work out a monthly maintenance dose.
I am otherwise a healthy person; with no other medical condition or history. I take no other medication. I have no allergies or reactions. In Jan/Feb, I had started feeling pain in finger joints and around the wrists. There was also a little twitch on the right side of my neck. With the infusions in the 2nd protocol, at least, these pains and twitches have subsided. But the main weakness in the legs, slow motor functions in the arms (cannot swing golf club with full control), and tingling under the feet remain. I have the following questions:
Q1. What infusion rates are used? In my case, they start at 40 ml/hr for the first 30 min, 80 ml/hr for the next 30 min and then at 120 ml/hr for the remainder dose. So it takes about 5-6 hrs to infuse 30 gm (or little over 600 ml). My infusions go smoothly. I feel fine during or after the infusion. Can the infusion rate be any faster?
Q2. IVIG they give me is prepared by Baxter. Any difference in brands?
Thanks for your advice.