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.

Maurice,

I was infused in the hospital for 5 days. The first day at 100 mL/hour, the next three days at 200 mL/hour, and the last day at 580 mL/hour.

The ICU supervisor was visiting the Neuro Unit and told the RN that this higher rate was not a problem. Another RN came to change a bottle later, and she did not like the higher rate, returning it to 200 mL/hour.

I did not have any issues this first time around with IVIG. I am scheduled for two days next week as an outpatient. I have read where others had no problem with the first infusion, but did have some issues with later infusions.

-Mark-

P.S.: Your assessment that my Prednisone taper was too aggressive appears to have been spot-on. Annie, too, made the same judgment. I thought of both of you, and your advice, while in the hospital.

My new taper goes down (from 60 mg) 6 mg each two week period. I also started taking 1500 mg of Cellcept each day. `

BTW, how do you say "I told you so" in French.

I just wanted to make a comment on the rate. I used to have a max rate of 200/hr. However, the infusion center recently changed the brand of IVIG they use for most patients to a 5% solution. Their old brand was a 10% solution. With the 5% solution, there is a lot more fluid overall, but they can give it at a much higher rate. They start me at 120 for the first bottle (6 bottles overall of 10 ml each), 420 for the next 2 and 720 for the last 3 bottles. The 720 rate means the last 3 bottles take about 12 minutes each. Of course, the first time we started the new brand, they gave it at lower rates to make sure I didn't have any side affects. Overall, it takes about 3.25 hours for all 6 bottles.

I guess my point is to be aware there are different brands that run at different rates. If I was just getting started with IVIG, I would want to know what the usual rates are for the brand I am taking and whether it was 5% or 10%,

Juanita