IVIg

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

IVIg

Postby javaneen » Fri Sep 25, 2009 6:03 pm

Hello everyone. Because I am highly allergic to copaxone and my body blocks the effects of the interferons my doctor has me on an "off-label" treatment for MS which is a once a month infusion of intravenous immunoglobulin (IVIg). I have been trying to figure out how this fits in with the CCSVI model for MS and have been having difficulty figuring it out. From what I can understand IVIg is antibodies extracted from plasma of doners. Treatment is given every 3-4 weeks and in extremely high doses when being used to treat autoimmune diseases. I can't seem to figure out how this therapy works for MS except that it has the ability to reduce the severity of inflamation. I am wondering if any brainiacs (Cheer, Marie etc) could help me figure out how this therapy fits into the CCSVI model.
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Postby guitarguy » Fri Sep 25, 2009 6:10 pm

I would like to know as well. I was on it a few times and it did nothing for me. Trying to figure out why they put me on it.
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Postby bluesky63 » Fri Sep 25, 2009 7:06 pm

Good luck with it!
Last edited by bluesky63 on Sun Mar 13, 2011 9:31 am, edited 1 time in total.
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Postby javaneen » Sat Sep 26, 2009 6:16 am

Thanks for the encouragement Bluesky. My sister-in-law is a pharmacist and she looked into the brand of IVIg that I recieve and its one of the better more expensive one. My doctor specifically asked for that one because of my history of severe allergic reactions to medication. I have had 3 infusions without any reactions so far. I am fighting my insurance company right now to continue to provide me the therapy.
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Postby bestadmom » Sat Sep 26, 2009 7:46 am

I can't see were Ivig fits into the CCSVI model. I think it fits into the autoimmunity model. My past neuro tried to get me on it when the cytoxan treeatments failed to halt progression. My insurance company denied it. I know others who get infusions monthly and swear by how great they feel.
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Postby mrhodes40 » Sat Sep 26, 2009 8:25 am

Well IVIG does not stop MS altogether. It does seem to help some people, but it is not a approved therapy as you mention.

If you go with the idea that CCSVI causes MS theoretically, ANYTHING that prevents inflammation is going to make MS seem better even if it is caused by CCSVI.

The reason is that as the leaking endothelium allows iron and other blood components in, the immune system reacts to clean this up. There is an over reaction and some of the damage that is caused to the brain is a direct result of this immune system effort to clean up the lesion and repair.

It is known that in stroke a good portion of the damage is caused by immune system reaction to the stroke and the effort to clean up. They are now testing on mice to see if drugs they use to suppress immunity, some used in MS too, will help if given to stroke survivors temporarily.

Spinal cord injury same thing, a good portion of the damage comes from the immune effort to repair and clean up.

This answer goes for every kind of immune alteration there is: ASCT, hicy etc etc, although there may be some real differences in mechanism of action for individual drugs, Campath comes to mind there, ......and it is highly speculative of course as CCSVI is not at all proven and someone will need to look at those angles. I have confidence that the drug manufacturers will make a real effort to see how their drugs work with CCSVI should it become understood as the cause of MS.

But just to bolster the argument CVI, insufficiency in the legs is absolutely positively proven and they KNOW that inflammation causes a good part of the damage in that problem. CCSVI is the same thing but in the brain instead of the foot.

ALternatively, if CCSVI happens and then autoimmunity happens after the fact and THIS is a large part of damage in CCSVI, then all of these MS drugs "work" the way they are purported to work in the autoimmune model, it is just that ongoing damage by the venous problems keep the area damaged so it can't ever actually heal.

that is all hypothetical of course
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Postby javaneen » Sat Sep 26, 2009 12:18 pm

Thanks Marie! That is what I thought about IVIg but wasn't sure if maybe there was more to it. It currently is working ok for me and right now that is the only option I got. I agree that most manufacturers will try to explain how their drug fits CCSVI but I think its a while befroe we will see that.
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