anyone on IVIG???

Tell us what you are using to treat your MS-- and how you are doing.

anyone on IVIG???

Postby simone » Thu Dec 24, 2009 9:34 pm

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:
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IVIH

Postby lmacalus » Tue Mar 16, 2010 8:18 pm

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
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Postby LR1234 » Tue Jul 05, 2011 7:06 am

Thinking of starting IVIg.....found this post.
Is it that risky?
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Postby simone » Tue Jul 05, 2011 2:54 pm

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 !
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Postby LR1234 » Fri Jul 08, 2011 2:12 pm

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.
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Re: anyone on IVIG???

Postby TeresaL » Sun Jun 28, 2015 6:57 pm

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
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Re: anyone on IVIG???

Postby Scott1 » Sun Jun 28, 2015 10:51 pm

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
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