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Tab4025
@tab4025

Posts: 2
Joined: Jul 10, 2017

CIDP having IVIG reactions

Posted by @tab4025, Jul 10, 2017

Hi, I was diagnosed with CIPD as a complication from an unspecified autoimmune disorder. my Neurologist started me on gamma garb IVig last September. Was really working. Then, I started having hives and then angiodema after the 6th month of treatment. I had 3 Angiodema attacks but it was not until the third one that actually caused my voice box to swell and my whole face and hands swelled, that they determined it was the IVIG. They did not happen until sometime after my treatment. I was Ok during. And the first two did not occur until after after my last treatment for the month. The third one occurred Two hours after the first treatment of the month. I was on gammagard, this was the only treatment to work for my CIDP. They are cautiously going to try a different brand, flebogamma. Has anyone experienced this? Should I try this other one? thank you in advance for any information you can provide.

REPLY

Hi Tab, welcome to Connect.
I’d like to introduce you to a few other members who are talking about CIDP (chronic inflammatory demylenating polyneuropathy). Please meet @bburleson1 @dlcutler @gratefulone @jazzy27 @lindy1956 and @suziep. You can read more about them in this discussion

– Anyone been diagnosed with CIDP? http://mayocl.in/2m6rsMw

@dlcutler mentions that he has also tried glebogamma and may be able to share his experiences with the infusion. I can imagine you’re nervous to start another drug. What measures will the care team take to monitor you after treatment in case you have a reaction again?

@colleenyoung

Hi Tab, welcome to Connect.
I’d like to introduce you to a few other members who are talking about CIDP (chronic inflammatory demylenating polyneuropathy). Please meet @bburleson1 @dlcutler @gratefulone @jazzy27 @lindy1956 and @suziep. You can read more about them in this discussion

– Anyone been diagnosed with CIDP? http://mayocl.in/2m6rsMw

@dlcutler mentions that he has also tried glebogamma and may be able to share his experiences with the infusion. I can imagine you’re nervous to start another drug. What measures will the care team take to monitor you after treatment in case you have a reaction again?

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Hi Colleen,
Thank you for you reply! No one has talked about any measures for monitoring my infusion. My rheumatologist gave me an epi pen. I am calling the neurologist to talk in more detail about having orders in place in case i have a reaction.

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