Hi, can someone explain me this:
The first time IVIG you have to get the treatment every day for one/two weeks. After that, you'll only need it once every few weeks.
What is the reason behind this? Is there a medical reason?

Or is it possible for someone who has never had it, has severe MG symptomes but isn't in a crisis, can just try and have it once?
Or does it always have to start with this kind of "attack" therapy? If so, why?

When I asked my Neuro about another course of IVIG last month he said normally only provided if you are having a crisis I think its more to do with cost than any particular medical reason.

Yeah, but if it's about the cost alone, why not try IVIG every month for 10 months to take care of the weakness so there will be no crisis, instead of waiting for an inevitable moment you have to give 10 days IVIG in two weeks and even more costs (stay overnight, ventilation, etc)?

Maybe there's some medical reasoning behind it. Like most patients start with prednisone attackwise: hospitalization and start high, after few weeks start tapering down.

As for why you need repeated courses of IVIG or infusions.

When I was first diagnosed I eventually had a course of IVIG but prior to that for some reason I had never been given Prednisolone only mestinon.

On the last day and the last bottle I had a severe reaction and have had no further infusions and as I said on inquiring of my neuro if it was possible now after such a long interval to have it again was told it was policy to give IVIG only if in crisis I don't agree with it but it is what I was told. So I can only assume it's about cost not clinical need because I spend most of the time hovering on the edge of a crisis and I hate it.

My neuro uses IVIG on a regular basis to try and prevent a crisis. Having said that, my first treatment was due to a crisis. However, I have received it routinely since that original crisis in 2005. He also kinda lets me set my own schedule. I call and discuss it with him and make changes as I feel are necessary. Right now, I am doing a low weekly dose in an attempt to keep it in my system over time.

In all that time, I have only had 1 time where the insurance company questioned the cost (even though it is expensive!) and after reviewing everything, they approved it.

I'm on Medicare and a supplement now and it is accepted as a standard treatment for mg,

Good luck and I hope you find what works for you!

Juanita

Hi Ravenclaw,
My neuro must come from the same school as Juanitadīs...
I have one Plex every 2 months as I have a refractory MG although the regular scheme is about the same as for IVIG: crisis or in preparation for surgery, but itīs the only treatment that works...
Donīt forget to drink a lot before and during IVIG and insist on a slow infusion rate!
Maurice.