Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
I found out I had CVID about a year and a half ago; I started out on Octagam and they have been fine tuning my 'cocktail' ever since.
I ended up premedicated with Aleve, Zantac, Zyrtec three days before and three days after, as well as steroids immediately preceding and following my Miracle Potion; however, my side effects of fatique, aches and other flu-like symptoms were so extreme and lasted so long they decided to change products.
For the past two Infusions, I've received Gammaguard with the same pre-meds, and my reactions haven't been as severe, but I'm still down for at least two days, totally unable to function. I get my Infusions on Wednesdays and the ailments don't hit until the weekend, and then I crunch.
Anyone else have an experience of such delayed reactions, and what are your experiences with Gammaguard?
Thanks!
I'm tired of feeling so crappy ☹️
You can call 1-855-250-5111 to speak to a Gammagard Nurse Advocate who may be able to answer your questions. I just signed up for their patient help program called MyIgSource that promises to provide "answers and advocates."
I was told that a Registered Nurse will be calling me back today.