IVIG comments

January 8, 2011 at 1:54 am

Thank you MarkEns for your input. My neurologist tested the strength in my quads & arms and indeed I was weaker (could walk okay but walking upstairs and walking up a hill was difficult). I was on 25 gms IVIG every 2 weeks for 2 months. Therefore my MD changed the frequency back to every 10 days 25 gms IVIG. That’ll be 75 gms/month. He was trying to wean me to every 2 weeks because I was clinically “strong”. But I guess my body didn’t like it. What is the half-life of IVIG? How long is it suppose to stay in your body to help prevent weakness?

I still get a lot of moderately painful electric shocks in my different parts of my body; which I am not taking any meds for. What does this mean? I was dx with CIDP 1 year ago and still wonder how I got this chronic disease. I refuse to take steroids due to side effects. Does IVIG ever lose its effectiveness? Does any know?

I would appreciate anyone’s input.

IVIg Comments

January 6, 2011 at 2:52 am


[COLOR=black]There are differences among all the brands of IVIg in how they are processed. These differences can lead to differences in side effect profiles and perhaps efficacy, although there is no scientific data to support the efficacy difference. Anecdotally, some people seem to do better with one brand than another. It might be worth trying, but dose might be more important. [/COLOR]

[COLOR=black][COLOR=black]Part of your decline could be that you are not getting enough IVIg. You are getting 50 g a month. Under typical guidelines, that suggests you weigh 110 pounds. If you weigh more, then you might ask your neurologist to increase the IVIg so that you get 1 g IVIg per kilogram of body weight every month. You might even need to go up to 2 g/kg every couple of weeks for a while, to see if you improve.[/COLOR]
[COLOR=black]If your doctor specifies a brand on the prescription and writes “dispense as written” (or something similar), then the infusion center can either refuse to fill the order or must use the brand of IVIg prescribed. Your state’s law might still allow a substitution, but it would be unusual.[/COLOR]

[COLOR=black]As far as Gammunex being targeted for CIDP, I think that is a misunderstanding. Talecris, the manufacturer of Gammunex, obtained FDA certification that treating CIDP with Gammunex is a “labeled” usage. No other manufacturer currently has this approval. That means it should be harder for an insurance company to deny usage of Gammunex in treating CIDP. It is not that the others don’t work as well as Gammunex; it is just that only Gammunex is labeled for use in CIDP.[/COLOR]

[COLOR=black]How an infusion center picks the brand of IVIg is up for debate. I know that my health care organization uses the cheapest brand it can get. I also know, because my neurologist and I discussed it, that if I had improvement with IVIg, but intolerable side effects, we would switch to another brand.[/COLOR]

[COLOR=black]Godspeed in finding a completely effective treatment,[/COLOR]