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Old 04-29-2011, 07:18 PM
 
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When I was a small child I had these treatments for an immunological issue but now I am being told I may want to consider Gammaglobulin infusions for the treatment of Remitting/relapsing Multiple Sclerosis. Has anyone else on here tried this treatment for MS? There isn't too much information on it being used for Remitting/Relapsing but there are a few studies citing the benefits in cases of Progressive Ms...
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Old 04-30-2011, 04:26 PM
 
Location: Greenwood Village, Colorado
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IVIG, aka liquid gold. Very expensive and sometimes difficult to have insurance companies cover it unless you have failed with other treatments or unable to use any other meds. Also you need a good doctor to fight for you.

The infusions take hours, you can have kidney failure or contract a disease, while it is rare it does happen and you have to sign off on that. Also the side effects are horrible,. terrible headaches and body aches. They do premedicate you with 2 benedryls and a pain killer, but the pain killer doesn't do much good.

I was on IVIG for awhile and hated it, I took it for chronic lyme disease. I didn't notice much of a difference, but some people claimed it made them well again. You might want to try it, but my infusions were approx 10k a month and I was on it for over a year. If you choose to go on treatment, you need it every 3-4 weeks. Your body will let you know when you need more.
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Old 04-30-2011, 05:36 PM
 
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Thank you for your response! Since I had the treatments as a small child, I don't remember the side effects but I have heard they are pretty nasty.

My neurologist said the treatments have a high success rate so I suppose I will try them. My insurance has agreed to pay for them but you know how insurance companies can be.
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Old 04-30-2011, 06:31 PM
 
Location: Greenwood Village, Colorado
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Your first infusion they have to do at the hospital or infusion center, just in case you have serious side effects. After that you can have a nurse come to your house if you want.
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Old 05-02-2011, 11:19 PM
 
Location: ATL suburb
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I don't know if your insurance will cover it, but there is an IVIG product that you can actually infuse by yourself at home, with no nurse required, other than the initial visit. Essentially, it's 2 small needles (like the butterfly needles) that you can stick into your thigh or other fleshy part of the body, and carry around a very small bag/purse-like bag that contains the product. It takes something like 2-4 hours, but you can still do normal activities, rather than being confined to bed with a huge bottle on a stand attached to your. The first treatment, a home nurse will show you how to infuse yourself and make sure there are no side effects.

It did not require Benadryl or any fever medication prior to infusion.

Last edited by anadyr21; 05-02-2011 at 11:20 PM.. Reason: additional info
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Old 05-03-2011, 07:03 PM
 
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Quote:
Originally Posted by anadyr21 View Post
I don't know if your insurance will cover it, but there is an IVIG product that you can actually infuse by yourself at home, with no nurse required, other than the initial visit. Essentially, it's 2 small needles (like the butterfly needles) that you can stick into your thigh or other fleshy part of the body, and carry around a very small bag/purse-like bag that contains the product. It takes something like 2-4 hours, but you can still do normal activities, rather than being confined to bed with a huge bottle on a stand attached to your. The first treatment, a home nurse will show you how to infuse yourself and make sure there are no side effects.

It did not require Benadryl or any fever medication prior to infusion.
Hmmm, I didn't hear about this product! There is no infusion pump or is it similar to an insulin pump? No port is needed? Do you know the product name?
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Old 05-03-2011, 09:02 PM
 
Location: Greenwood Village, Colorado
2,185 posts, read 3,888,771 times
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Quote:
Originally Posted by anadyr21 View Post
I don't know if your insurance will cover it, but there is an IVIG product that you can actually infuse by yourself at home, with no nurse required, other than the initial visit. Essentially, it's 2 small needles (like the butterfly needles) that you can stick into your thigh or other fleshy part of the body, and carry around a very small bag/purse-like bag that contains the product. It takes something like 2-4 hours, but you can still do normal activities, rather than being confined to bed with a huge bottle on a stand attached to your. The first treatment, a home nurse will show you how to infuse yourself and make sure there are no side effects.

It did not require Benadryl or any fever medication prior to infusion.

I never heard of it, not sure if it exactly the same thing. IVIG infusions require a nurse each time. They take your BP every 30 minutes and they need to be there to watch to make sure you're ok. if it is the same product, they do have to premedicate.

Also IVIG solution is heavy and thick, that's why there is a pump to push it through the line and to time it correctly so it doesn't over work the kidneys. Even with the pump the IVIG solution still clogs up in the line. So I can't see IVIG going through 2 little needles. I'll ask my infusion nurse when I see her. I do know of different types of IVIG but I never heard of that one.
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Old 05-03-2011, 09:02 PM
 
Location: ATL suburb
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Originally Posted by mrstewart View Post
Hmmm, I didn't hear about this product! There is no infusion pump or is it similar to an insulin pump? No port is needed? Do you know the product name?
I used to have a bag, pen, and notepad, when I first got the product. I can't find any of them, but looking online, it may have been vivaglobin subq. This was a few years ago. However, they are apparently discontinuing it. I'm not familiar with insulin pumps, so I can't answer that part, and no, no port was needed. It was like a pin prick that I stuck into my thigh or abdomen, put the vial in the little bag, and went about the rest of my day. I even let my child do it once for me! I didn't have any side effects, though, my need for the product was temporary.

Believe me, if I ever have to use IG again, I'll do it subQ well before I do IVIG, regardless of the cost difference.
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Old 09-12-2011, 11:15 AM
 
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No side effects...if anything very bad effect after skipping the normal monthly treatment when a close relative passed away and I didn't have the heart to stop everything to get infused. IVIG is liquid gold and I have been dx over 10 years. I probably started IVIG 8 years ago and haven't ever stopped accept the 1x mentioned above...which resulted a 5-day stint of IV steroids. So to keep from "having an event or episode", I keep to my monthly appointments. I get infused at home over a 3 hour period (based on my weight). The drug itself is named Privigen. I get 3 vials and the nurse constitutes it while I get hydrated. I used to be on Gammagard - but not sure why that stopped...perhaps it had to do with a change in insurance carriers. On a daily basis, I subcu. inject Copaxone. I hope this helped. Keep your chin up - its not that bad of a disease...I am sure others afflicted by other disorcers are alot worse off so personally I thank God that this is my cross to bare. Good luck to you.
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