I am starting IVIG infusions next Tuesday. I have had a couple in the past, but it was a long time ago and when I found out my insurance at the time didn't cover it, I had to stop.
I was wondering if anyone could tell me if it has helped them--back when I did receive a couple it was too brief to see any difference.
I also would like to know what to expect, as all I really remember is that I was extremely tired during the treatment, and for a couple of days after.
But, like all of us, I am always extremely tired!!
I guess I'd just like some thoughts and any encouragement as I am starting to get a little nervous, too.
Thanks in advance.
I was on IVIG for a little over 2 years and have now moved to SubQ. I went through 4 different brands of the stuff before I found one that I had NO side effects with. One one of my support boards it seems to be pretty common that we all do better if we follow these recommendations: Hydrate and keep the infusion speed slow. There are people out there we call "speed demons" who can do the infusion at top speed with ZERO side effects, but there are not many of them. I would recommend going slow the first time and then see how you feel. If you have mild side effects then speed it up the next time. If you get a spinal tap migraine you know to keep it slow. Most common side effects are headaches and feeling like you have the flu. Gatorade after saved my life lol.
As far as how I feel now? It was like a miracle drug for me. I stopped getting sick. After 5 years of being deathly ill, I stopped getting sick almost completely. I am sick now lol but it is relatively mild sinus infection. It should reduce the number and severity of your illnesses but could take up to 6 months to see any changes. Good luck! I'm sure it will be a great experience
Thank you so much for the reply!!! I am happy to hear it worked for you. I will definitely make sure to hydrate well and tell the nurses to keep the infusion speed slow.
When you were getting the IVIG, how often did you get it?
I got it every 4 weeks. 3 probably would have been better. After 2 years my levels never got above 700. After one month of scig the were at almost 1000! I was shocked honestly. I was getting...omg how much was I getting? lol 27 I think of Gamunex when I stopped. I could not go over 100 ml/hour. Made for a VERY long day. I would take snacks. Don't be afraid to speak up if you feel anything during. They can slow the speed or stop for a few minutes.