anyone on IVIG???

[simone]

I have not been able to figure out how to post except for this, please excuse me if this is not ok.
Diagnosed 2-97
The main medication I have been on the last 5 years is IVIG. It has been a life saver . Is anyone else familiar with it?
I am extreemly interested in CCSVI as it seems to me a genuine missing piece.
PS Hope I can find any comments and learn to navigate here, not sure where this will end up ... Please help!
The people on this site are astonishing!

[lmacalus]

took it for yrs, LOVED it - felt like super woman
came off when I learned how risky it was - doing FINE w/o it
L

[LR1234]

Thinking of starting IVIg.....found this post.
Is it that risky?

[simone]

Thinking of starting IVIg.....found this post.
Is it that risky?

Gave up on this post as there was no reply and now for some reason got an email.

I don't know what risks Imacalus is referring to . It is a pooled blood product . They say the risks of viral infection are extremely rare given the processing. I would chose that over any "MS" meds any day. I was on it for a total of 5 years as well , with interruption by my health insurance. It helped me dramatically till i was switched brands. Actually was able to exercise and rebuild muscle.

Had procedure for CCSVI July 2010 and stopped IVIG. Had great results !

[LR1234]

Cool, maybe its worth a shot then????

Slightly worried about the CJD risk though...apparantly the screening isn't so great with CJD as its a protein or something.
Also worried about my reaction to it.

Did you have any relapses when on it? Did any of your symptoms improve?

I have heard they have changed the solutions. My dr was telling me they lowered the sodium and have added other stuff to it. I hope its still as good.

[TeresaL]

I took IVIG for many yrs, it helped. Then insurance stopped covering it. Husband had to go to his work HR and got IVIG covered again. So I have been back on it for 5 mos now. Recently started high dose vitamin D3. It is helping a lot.
Look into it. I can send you some info on it. I stay away from milk products and calcium. Ck kidney/blood every 6 Wks

[Scott1]

Hi,

I think what they are targeting are your NMDA receptors. The IVIG (Intravenous immunoglobulin ) is a product made from many donors that aims to modulate your response to antibody production. Effectively normalize it. There is some evidence it works across a range of autoimmune diseases. It is an infusion of IgG antibodies. If you are IgA deficient it can create problems.
Good luck with it.

Regards

[Vivianne766]

My neuro was on vacation. Heard about IVIG from the nurse for the first time. Wonder if it works for progressive MS.