Are there different IgG formulations for IVIG ? - CLL Support

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Are there different IgG formulations for IVIG ?

markjeep51 profile image
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I thought I read a year or so ago that there may be different formulations of IgG; some better and some not as good. Would someone confirm whether this thought is correct or not and if true, what manufactures are involved. I also understand that there are regional shortages of IgG for transfusions. Could someone tell me what world wide regions where this situation exists. FYI: I live in Tennessee, USA and on Medicare and Veterans Administration Health Care. Thanks.

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Panz profile image
Panz

This is by my experience only...no info on it.

I have been a “snowbird” until September of this past year. There have been shortage issues in both MI and FL for the past two or so years. However, I have always been able to get my IVIG every 4 weeks. There were a couple of rationing periods but they gave it to those of us who depend on it so strongly. Once they hooked me up with a half dose but the other half arrived before the fist dose was finished.

There are different brands and I have my favorite but will be happy for what they have. Gammagard is my favorite as I have absolutely no reaction. Some of the others I might have flu like symptoms or often a want to be headache. With the Gammagard I need np prep at all....it is great stuff and keeps me in a very good place.

Panz 🙏☘️💕😍

markjeep51 profile image
markjeep51 in reply toPanz

Thank you very much ! Mark

AussieNeil profile image
AussieNeilPartnerAdministrator

I don't know that it's a matter of good and not so preparations rather than some of us who experience reactions might find switching to a different supplier can eliminate that problem.

Neil

Mark,

For a list of different formulations for IgG infusions

see

primaryimmune.org/publicati...

For shortage info

see

fda.gov/vaccines-blood-biol...

pptaglobal.org/safety-quali...

I have been on IVIG and SubQ infusions since 2016 and not had any problems with shortages. The U.S. is one of the few countries that pay immunoglobulin donors, who can donate every 28 days

. We have lots of IgG but we have a rapidly increasing number of uses for it.

Medicare Part B covers in hospital administered IgG infusions as follows: the hospital bills roughly $12,000, Medicare Part B plan allowance is approximately $3,000, Medicare pays $2,400, and in my case Blue Cross picked up the rest.

I assume the VA covers IVIGs, but you may have to push them to act promptly. My CLL is a 100% service connected disability, but when I asked if I could get my SubQ med through the VA I was told it would take 2 ½ months to process the request. I did not want to wait so I let the VA request slide.

Another concern is the VA’s vulnerability to IgG shortages. The VA is the only U.S. government health insurer allowed to negotiate drug prices and there were reports on this web site several months ago that the VA was experiencing an IVIG shortage and it was suggested that perhaps the shortage was due to VA being the low bidder for available IVIG.

I had nine IVIGs using Privigen and it worked wonderfully well to control a fifteen month long series of lung infections that did not respond to antibiotics. Privigen is usually well tolerated, but I had a serious adverse reaction to the tenth Privigen infusion and lesser adverse reactions to two other types of IVIG. Looking back at this period, I do not think IVIG meds were the sole problem, I had similar reactions to several other drugs.

For what it is worth my mildest IVIG adverse reaction was to Flebogamma IgG; just a full body sunburn & peel.

The best advice I can give anyone starting on IVIG therapy is to start with an Immunologist rather than your local Hem/Onc. The Immunologists seem to know more about IVIG, adverse reactions, and how to customize the administration to your needs.

Good luck,

Owen

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

17 years of getting IVIG. I overheard a nurse, in my early days, telling a patient that if they reacted to just switch brands. It wasn't a matter of one brand being better than another, just what worked best for each patient. When I asked my hematologist about brands she said that any were OK except those with _____? It was a long time ago.

Interesting that Panz likes Gammagard. It is the only brand that I have had a reaction to (very minor and controlled immediately), but that was after several years with no problems.

IG Magazine (available on line) has had some good information about different IVIG formulations.

Panz profile image
Panz in reply toMsLockYourPosts

Yes, the Ig Living magazine is very informative. I love the Gammagard...we are all different. What brand is your favored one?

Panz 🙏☘️💕😍

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer in reply toPanz

I really don't have a favorite. One center used Privigen. The current one uses Gamunex C. I haven't had problems of any kind with either. I used Gammagard for several years before my minor reaction to it.

wmay13241 profile image
wmay13241

Every 3-4 months (when her IgG drops below 400) my wife has been getting Gamunex-C from either NIH or a military hospital. She has not had any problems.

Placidlp profile image
Placidlp

I have been on ivig for almost two years and sometimes experiencing a shortage (Florida). Usually get Gammagard with no problems. They changed to Gamunex and I broke out with hives even though I had taken Benadryl prophylactic. I had to take steroids for five days to clear it up. So again, we are all similar ..but different in the way we react. Best of luck

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