ivig- how many are needed

[bulldog24]

Well is one ivig infusion considered the cure? Or do some docs suggest multiple infusions? If they do why?

[Dedee]

That is a very complex question. Since there is no common "standard of care" yet for this disease, most physicians are doing what they see works best in their practice. Most practice very similiar protocols, but much of it is individualized to each patients presentation. I believe there is one specialist who does one round of IVIG and then has a wait and see approach as to what sort of results you get. If there are good results after a certain time (not sure what the time is), that is it, if not you do another round. When we got ours done our physician did two rounds of IVIG about 4-6 weeks apart. I have recently learned that she now recommends the IVIG every month until results are where you want it. Also, I think that much of the decision for IVIG is based on how the family is getting it paid for. For some families, insurance will pay and for others they are paying 100% out of pocket. So for us, it came down to finances. We did two IVIG's and because we had to pay it all out of pocket we had to stop at that. I would like to do a third, and her doctor is agreable, but we just don't have that kind of money right now.

 

So I think there are many variables involved. I think it is becoming more common to do multible IVIG's as needed for results, but again, not everyone is able to do that. Also, fortunately there are some who are lucky enough to only need one. That would be awesome.....

 

Dedee

Edited January 4, 2012 by Dedee