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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Hizentra & Excessive Gas - Survival Strategies

LightLines
LightLines
Hi everyone

Ok...after injection #3 (they are gradually increasing my dose so this week I got 15 mL, and I do them in my stomach) I have to admit that I am seeing a trend. Pardon the TMI...but I have to suspect I am not the only one with this issue. I find that on injection day, about 3-4 hours after finishing, I get sidelined by severe bloating, gas and diarrhea. The next day is better, but it getting back to "normal" is a gradual process over several days. And by then, it's time to get the next one.

Does anyone have any tips for avoiding this? e.g. using legs as injection site, medication, other?

Thanks and have a great day everyone!
deleted_user
deleted_user
I get this too. My doctor has been cutting the dose, and that has helped some, but of course it can't get too low. I have been using my leg, but haven't changed spots (to my belly, I do use opposite legs) so I'm not sure if that would help. I have started taking benadryl the night I take my infusion, and that seems to be helping. I take the infusion during the day, so don't want to take the benadryl until I am home for the night, but maybe you would want to take it with the infusion. For the past couple of weeks I seem to be better if I take it, those side effects and the headaches aren't as bad.
PrincessButtercup
PrincessButtercup
A few of us have had that problem. I believe it's not so much an issue with Hizentra as it is doing the infusion in your belly. I switched to doing my infusions in my thighs and the problem stopped. Also, the knots would dissipate by the next day whereas when I infused in my belly I'd have the knots for at least 3 -4 days.
LightLines
LightLines
Hi, thanks for the tips!

I will try switching to my thigh once I am doing them myself at home and see if that helps. I have the issue of several days of knots too, would be nice to get rid of those also.

What good fun this all is...NOT! :-)

Have a great day!