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anyone on IVIG???

Posted: Thu Dec 24, 2009 8:34 pm
by 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!
:?: :roll:

IVIH

Posted: Tue Mar 16, 2010 7:18 pm
by 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

Posted: Tue Jul 05, 2011 6:06 am
by LR1234
Thinking of starting IVIg.....found this post.
Is it that risky?

Posted: Tue Jul 05, 2011 1:54 pm
by simone
LR1234 wrote: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 !

Posted: Fri Jul 08, 2011 1:12 pm
by 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.

Re: anyone on IVIG???

Posted: Sun Jun 28, 2015 5:57 pm
by 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

Re: anyone on IVIG???

Posted: Sun Jun 28, 2015 9:51 pm
by 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

Re: anyone on IVIG???

Posted: Mon Sep 21, 2015 12:15 pm
by Vivianne766
My neuro was on vacation. Heard about IVIG from the nurse for the first time. Wonder if it works for progressive MS.