CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Has anyone tried this? My PCP mentioned it today as possibly therapy for people who have PI--primary immunodeficiency. It's less costly than IVIG and not as troublesome to administer.
Has anyone here tried it?
Posts: 3528 | From US | Registered: Apr 2007
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posted
I have. Just be careful...blood byproducts can produce allergic reactions and anaphylactic response. I had allergic reactions to them and had to stop because I obviously couldn't have steroids before I took them. They also seemed to dig up neuropathy in my left arm which hasn't gone away since.
Posts: 710 | From West Coast | Registered: May 2008
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My doctor did a blood test on me, I think call the IGA Antibodies test or something similar to that (sorry can't remember exact name) that I think was supposed to help determine if I would have an allergic response, as I'm about to start this stuff.
LittleLymie that is disturbing about the reaction/neuropathy. Did you have the test I had before doing the shots? Because I wonder if it actually is useful or not.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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My son has been on Vivaglobin for about 7 weeks with no side effects other than swelling and redness at the injection site.
We are starting to see some improvement in his fatigue, he is better able to follow a conversation and answer questions.
There is also slight improvement in the severity of his seizures and myoclonic jerks. He has "isolated IgG deficiency".
I administer it to him once a week, and it total it takes about 2 hours. You could probably administer it to yourself with a little practice. The first dose was done at a hospital with a nurse monioring him the whole time.
The second dose was done at our home with me doing it, but with a nurse in attendance. The 3rd time, I was comfortable enough to do it on my own, but a nurse would have been available for as long as we needed her.
Dan is on medicare/medicaid so the whole thing is covered. From the bills I have seen, it would cose about $5,500 a week.
It was a very difficult decision to make, because as noted in an above post, it is a blood product with all the inherent problems. But, we felt we had to give it a try as Dan has been on IV Rocephin twice, levaquin, rifampin as well as all the usual abx.
The seizures, myoclonic jerks and fatigue were the only symptoms still lingering with no improvement over a two year period.
I hope this helps in some way, with your decision and that you start to see some improvement soon.
Take Care, Karen
Posts: 89 | From Long Island, New York | Registered: Mar 2007
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