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.

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Marilyn-Doss-Wright 09/08/2010

Thanks to everyone for the support lately. I had my IVIG yesterday and it went pretty well. They started VERY slow. So slow the nurse was worried it might clot. We did increase the rate every 20 mins or so. I had a total of 600 ml and the last 200 ml bottle took only 25 mins. That was when I started to have some negative reactions. I got chilled and started to get a headache. Afterward, I had a headache and started running a low grade fever and my back hurt. After I got home my heart rate went to about 120 bpm for about 5 minutes but then returned to normal. I still have a splitting headache today, neck hurts and a barely detectable fever. On tylenol and that is helping but still in some pain. The bad thing was it was in the doctors office so it was not very comfortable and my IV line got bent. Still not too bad. The Dr. had a nurse stay with me the entire time and he stopped in every 30 mins or so. I think if I don't go to the fastest rate that may lessen the problems next time. I have no IgA but I did not have an allergic reaction. I was on Zyrtec, but that is a staple in my life so I should be on it everytime.

Marilyn

PrincessButtercup 09/12/2010

For my first infusion I was given Benadryl, told to take advil in advance, and I think that was it. As I started noticing side effects, they would stop the infusion, call my doctor, and administer IV meds to counteract the side effects. Once the side-effects were gone, they would restart the IVIG. If you are really worried about side-effects, you might want to reconsider sub-q it's not so much a last resort as that people are a little nervous about putting needles in themselves. I didn't seriously consider it until I found out that patients tend to be happier with it if they can get over the needle issue. It is my understanding that doctors prefer to start children on sub-q rather than IVIG, and insurance companies prefer it too because they pay less (but your share of cost will be a little more).

I'm eagerly awaiting my transition to Hizentra because it's become so hard for me to hold down my job with the infusions and side-effects. I think Hizentra (sub-q) will fit into my life better, and hopefully help me have more energy too.

Good luck! :)

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