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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/ Common Variable Immunodeficiency Support Group

It's official -- CVID

nicholeu
nicholeu

I got my vaccine challenge results today. No response at all to any of the subtypes of the pneumovax. With the low A, G, and M we have the diagnosis. I'm relieved to know and a little nervous about what's next. The immunologist said the next call I'll receive will be to set up infusions. She said likely Gammagard IV. She said because of my low A I will need specific products. I'm worried about side effects. Worried of having a reaction. Worried it'll make me feel worse. I don't feel bad now. Sigh. Hoping to switch to SQ once I'm stabilized. She made it seem she preferred not to start SQ right off the bat because she feels like I need to be monitored more closely for reactions starting out. 

Qweengoober
Qweengoober
I was diagnosed with selective IgA deficiency at 10 when my mom was diagnosed with CVID. My IgG Nathan to decline at 27 with my first pregnancy but I didn't need treatment until 37. So I have never had IgA and my mom has had a few reactions over the 28 years she's been getting IVIG. Her reactions, while a scary at the time, have always been easily contained and she is on a low IgA product. I started with IVIG and got the migraine and fever the day after. So my doctor switched me immediately to hizentra subq. I have had no adverse reactions to it after 7 weeks. My doctor said that they start with IVIG because it is easier to get you up to appropriate IgG levels that way and then you maintain them with subq.

Every one is different. It sounds like your doctor is being very conscientious of your situation. Know that it may take some tweaking and changing as the years go on but there are optionss and things you can do to make things go smoothly. Be sure to hydrate and take premeds as prescribed. Be open with your doctor about how you are feeling. Best of luck!
Fezzywig
Fezzywig
Congratulations!! I know that when I finally received my diagnosis I was so thrilled. Finally, there was validation and I could begin to do some healing. I hope that you may share some of those same feelings. Enjoy this gift for as long as you can, but just keep in mind that this is the beginning of your lifelong journey and is not always an easy one. As soon as you feel up to it you might want to start gathering all the information you possibly can and be prepared to wring your doctors for all that they know as well. Within a year or even months, it is very possible, even likely, that you will know more than most of your doctors. Hopefully, this will change in the future but for now, it will be up to you to learn as much as you can and work on becoming a CVID detective. In the meantime however, best wishes to you and congrats on finally getting your diagnosis.
nicholeu
nicholeu
Yes I have received a ton of information from IDF, they mailed me a whole folder full of stuff and a book. I have also been doing a lot of research for the past several months so I've already learned so much about it. The only thing I have to think of is if I want to go through any genetic testing. There's still an autoimmune disorder I have that can't be diagnosed bc I test negative for everything bc I have no antibodies so I'll have to think about that. Sounds expensive. Lol.
nicholeu
nicholeu
I will also be having my scans soon including HRCT to check for any signs of lung issues.

I mostly worry about infusion reactions. Like today I'm tired and fatigued which has been my new normal. But I feel ok. I really hope I respond well and don't get the side effects a lot have gotten like migraines, worse fatigue etc. Made me even wonder if it's worth treating since technically I am doing alright. I don't get sick. I function. But also work in pulmonary office and hospital so I'm exposed to a lot. I guess I need the infusions to protect myself.