I have been taking IVIg for five years and just started having bad reactions. The last time ,about two months ago, I ended up in the ER and now afraid to go back. Has anyone stopped their IVIg treatments and what has happened?
I just stopped I had an insurance change and with that can no longer afford it. 2000.00 co pay. So we may find out together. I am a tall guy so 70 grams every two weeks just became 4000.00 for the month.
I would not stop treatment without consulting with your doctor.
Can be accepting the final treatment differently .... speed, etc.
Perhaps there was a problem with the stuff you accepting
I stopped IVIG, but not suddenly. My doctor had me transition to Imuran over a period of several months. I started taking the Imuran at the same time I was taking IVIG. He told me that it would take at least six months to see an effect, which was about right. Eventually, I noticed that I was feeling better between IVIG infusions. So I stretched out the interval between infusions from 3 weeks to 4 weeks, then 5, then 6, and eventually stopped altogether. I have not had an infusion for over two years now, and am doing fine. Don't know how helpful that is for you, but if you can tolerate IVIG for several more months while you try the transition, it might be worth discussing with your doctor.
Another alternative, if your insurance will cover it, is to switch to plasmapheresis. I had this one time, and it was not very pleasant. But, it seems to work well for some people.
Finally, you could consider taking high doses of prednisone. Prednisone did nothing at all for me, but apparently it does work great for some folks.
Good luck in whatever you do.
Hi robert juat wanting to. ask.a question im in australia and my husband has the cidp .do.you have to.pay for ivig in america .we get it for free from the blood bank and it is given in outpatients at the hospital.he gets his transfusion every 3 weeks.no insurance is needed the specialist just writes a script
Another alternative is taking the IVIG in subQ form. It is the same medication given underneath the skin. One brand is Hizentra. It has many benefits- you can infuse at home, choosing your time and day, but the biggest benefit is greatly lessened side effects. Most side effects such as headache, fatigue, and problems with vein puncture are eliminated. The only down side is sticking yourself usually in stomach in multiple sites every week. To me, that was fine. I developed aseptic meningitis with IVIG even with trying all ways counteract side effects but tolerated subQ form very well.
I stopped my IVIG b/c my SED rate was getting too high. I've just been taking prednisone here and there as I get flare ups. I am supposed to be taking cellcept, but that stuff scares me so I never started it. If my CIDP comes back in full force, I will definitely go back to the IVIG again as it was the only thing that would take away the majority of my symptoms and the severity.
I started having mild reactions to Gammaguard, so I got switch to Gamunex. Now, I am having moderate reactions to that... not sure what direction to go. IVIG has been a miracle drug for the past two years, now I'm not sure where it's heading.
You could try subq form. The side effects are not as nearly the same as intravenous.