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'm fairly newly diagnosed and have been on weekly subQ infusions of (8g) Gamunex C since December. We're traveling this coming week and will be in route for 6-8 hours and the Gamunex C requires being on ice. We will be gone for almost 2 weeks and I don't want to have to take all of the supplies to do the one week's treatment that I'll miss nor do I want to have to do the treatment around my grandchildren. I'm contemplating skipping one weekly treatment and the infusion nurse at my doctor's office said it's OK to skip but be prepared that I will be more susceptible to an infection. Has anyone else skipped a dose of Gamunex C (or another product)? Thanks for any information or help!
GMRC
I don't do subcu, but I get the infusions. Last year, I had to skip a month due to insurance issues. They felt since I was doing well- I must be cured and not need infusions anymore-- I got a cold at the end, but was ok. If you skip, don't make it a habit and BE CAREFUL. I avoided anyone ill and was pretty germophobic until I was allowed to receive an infusion. I wouldn't skip on purpose- but necessity.
kelli1b
I've been on infusions since 2009. I've also been a peer support volunteer for IDF as well as a patient advocate and I can tell you I have never advocated for skipping. We are susceptible to deadly infections not just the common cold. If it was that easy and not dangerous to just skip trust me when I say we ALL would be skipping lol I'm on Gammagard and mine do not require refrigeration so I feel your pain here. I would recommend taking them with you. I have to say as a single mom who has done all my infusions in front of my kiddo, it has never scared her. Now if its YOUR comfort you are worried about, you can simply wait until the kiddo's go to bed before infusing. Mine only take 1 hour (12 grams) so that's not a big deal for me. Good luck and enjoy your travels
deleted_user
Unfortunately, I must admit that I have skipped twice in the last few months. In over 10 years I have never missed an infusion of either IVIG or SubQ. I seemed to have gotten away with it the first time, but the second time it is not clear to me. I did not approach either of these instances with a frivolous attitude by any means. The second time I skipped, this past week, was because I was simply too ill to handle it by myself. I live alone and did not have anyone to call on for help this week to get to me in time. The meds had already been drawn and the pump was set up and ready to go, but I just couldn't do it. Once 48 hours had passed I was afraid to infuse for fear that the med might be contaminated or gone bad. Not only do I feel incredibly guilty about the waste of money but I feel desperately ashamed of myself. And now, it appears that it has made a difference in my health as well. Without going into anymore detail, I am pretty damn sick. I was already on thin ice, possibly the result of the last missed infusion, but now I am over the edge and have been in and out of ER several times with another undetermined infection. I'm back home now, still ill, and likely headed back tomorrow. My advice is never skip unless the choice is out of your control. Never.
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