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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stefann 09/05/2017

Hi everyone. Just had second infusion last Thursday, this time around it seemed to go better no headaches. Only things I've noticed this time is bouts of dizziness and no appetite at times a few days after. Anyone else experience side effects like this? Wondering if after each infusion I may have different effects. Thanks!

sonnycamehome 09/05/2017

You may experience a variety of side effects for quite some time as your body adjusts to treatment. It can take 6-12 months for your body to adjust and to get the full benefits of treatment. I might suggest keeping a notebook with your side effects and their severity so you can discuss them with your immunologist.

stefann 09/05/2017

Thanks sonnycamehome! Keeping a notebook is a great idea, thanks for the suggestion.

RubyWitch 09/06/2017

I am really having trouble figuring out how to post on here!!! I'm not at all sure how I managed to get to this point! LOL
(Not very technologically advanced, I'm afraid!)
My username is "shoeshine," I think, but I tried several times yesterday to join and think I changed names a couple times.
I was diagnosed last December but have been fighting Medicare for treatment........my team of doctors are writing appeals for me. They think they will win as they have in the past. Right now I am terrified of the side effects I've just started reading about. I'm kind of a mess and definitely stressed to the max. I'm 66 and have always thought of myself as emotionally strong, but I've been depressed and scared and feeling very alone lately. Even crying sometimes. My family is trying to be supportive, but I barely understand this disease and don't think they realize how horrible I feel almost every day. Sorry.......I sound like a real whiner. It's obvious I need some help from people who understand and know way more than I do. If anybody responds, I hope I can figure out how to find you! Thank you all so much in advance. Greenlydia (or possibly RubyWitch)

stefann 09/06/2017

RubyWitch totally understandable the emotions you are going through. I definitely cried and felt alone as well. At times I still have moments of what ifs and work myself up. This group has been supportive and a good resource. Everyone's side effects may be different. I try to tell myself things could be much worse and with treatment cvid is manageable

Pattiana 09/09/2017

My specialty pharmacy was really good about letting me know you have to drink a lot of water to avoid side effects. I do subcu at home, which also has less side effects. Although everyone told me it wouldn't hurt--it does. I'm new to this group, looking for some support in how this has ripped my life apart.

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