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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Starting IVIG

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dsdmom

Senior Member
Messages
397
It looks like I will be starting ivig - possibly next week. The first time I have it done I need to go 5 days in a row. I am a bit nervous and am wondering what to expect. For those of you who have gotten ivig, were you pretty miserable and if so, for how long? Should I expect to be out of commission for a week or 2? I'm most worried about a headache I guess.

It was approved based on neuropathy, so it is not for CFS per se.
 
ukxmrv

ukxmrv

Senior Member
Messages
4,413
Location
London
I was fine with IVIG, took Benadryl which my doctor recommended. Sadly, no effect on my ME symptoms.

Hope that it goes well for you!

XMRV+
 
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dsdmom

Senior Member
Messages
397
Thanks for your input!
What were you taking it for? Do you remember your dose? And how often?
 
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