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Rare side effects from IVIG

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7 years 4 months ago #63676 by ewtcomish
Rare side effects from IVIG was created by ewtcomish
About 15 years ago I was given IVIG and got aseptic meningitis almost immediately. For years after that I used prednisone until I developed an eye disorder CSCR for short. In January of this year we tried IVIG again. My Hemo said the formulations were very different today. I got the meningitis within 24 hours but about 8 days after infusion I developed a rash all over my body and lesions on the palms of my hands and bottom of my feet. This condition lasted for about 8 weeks and my hands peeled 3 times and my palms are still sluffing off skin but not as bad as at onset. I also developed what I believe a Glomus tumor growing out of the base of my thumb nail. Even the rash on my body left scars. This rash would remind you of the measles or chicken pox. My question is has anybody else had this type of reaction to IVIG?
Stuart
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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7 years 4 months ago #63677 by Sandi
Replied by Sandi on topic Rare side effects from IVIG
Stuart - I have never heard anyone report rash like that after IVIG, but I did find this:

www.aaaai.org/ask-the-expert/rash-intravenous-immunoglobulin

jamanetwork.com/journals/jamadermatology/fullarticle/402868
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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7 years 4 months ago #63687 by Hal9000
Replied by Hal9000 on topic Rare side effects from IVIG
FYI...
Apparently there is yet another new way to manufacture IVIG. There are others here on PDSA forum who are in the clinical trial for it.
pdsa.org/discussion-group/6-general-itp-discussion/30080-long-remissions-after-ivig.html#63649
ITP Types and Treatments by HAL
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7 years 3 months ago #63694 by ewtcomish
Replied by ewtcomish on topic Rare side effects from IVIG
Sandi:
There is a 2006 NIH report that describes my symptoms but it noted that there were only 33 known cases at that time. If it's rare I get it. It's not my first time to this rodeo.
FYI: www.ncbi.nlm.nih.gov/pubmed/16490849
Thanks
Stuart
Stuart
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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7 years 3 months ago #63696 by Sandi
Replied by Sandi on topic Rare side effects from IVIG
Stuart - I believe that it's rare, but I'm sure many doctors don't report it. Did yours?

I get rare side effects too which is why I've decided to stop taking any new meds. I had a nasty, rare side effect from Rituxan and had to report it to the FDA myself because my doctor didn't. That goes on all the time and side effects are vastly under-reported. It's one of my biggest pet peeves.
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