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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  • im 38 yo female. 4 years ago after a year of severe emotional stress and constant fighting with my bf (now husband) regarding his abusive kids, xwife who stole my credit, threatened me, continuous court, thousands of dollars... And literally crying daily. I was burnt out, tired, constant pain. I was diagnosed with fibromyalgia- for the next two years my body was physically breaking down at an...
  • Hi,I hope this question isn't off topic, but I was diagnosed with CVID about a month or so ago. As like most of us I've been very sick for almost 10 years with sinus, lung, anemia, on and on...I've had two sinus surgeries, iron iv infusion.Finally, a new immunologist , did the tests and put two and two together. I am waiting for insurance approval to start subQ. I also found out I have a small...
  • My 21 year old son has been diagnosed with CVID. His IgG is 480, IgA is 66 and IgM is 30. His problems started in Oct of 2015 when he started having daily headaches which still persist today. He has been all numerous medications from muscle relaxants to migraine medicine. We recently found out he has inflammed polyps so chronic sinusitis and lots of muscularsketal issues around his neck which is...
  • nicholeu

    It's official -- CVID

    4
    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...
  • I find I'm terribly confused and upset by a lot of the things people are saying to me since the CVID diagnosis and IVIg treatments starting. I wondered if you could share your experiences and thoughts. I understand this isn't a well know disorder/disease but I keep explaining over and over and I don't think anyone is getting it fully and many are creating their own version of cvid that makes...
  • Over the last 2 years my son has had 8 diagnosed cases of pnuemonia and 12 in his whole life. He is now 7 years old. He has asthma, a lot of sinitus, ear infections and even got the flu with the vaccine. Blood tests inititally showed no protective response to the pneumonccal vaccine, but a good response to the pneumovax vaccine even though now he is getting viral pneumonias. He is followed by a...
  • I've been using 8G SubQ Gamunex-C weekly for over a year now with good results, a nice relief compared to the A.M. (aseptic meningitis-in the hospital for 3 days) I had from the first IVIG Gamunex-C in October '14. Recently my regular dr. (not immunologist) changed my premed to Claritin rather than the Benadryl about a month ago and within two days I had the same type of symptoms I'd had with the...
  • Supposed to get the results of my blood work (vaccine challenge) tomorrow. Last I checked the post vaccine results weren't back. I had the drawn last Friday. Not sure what's taking so long. I hope I don't go to this appt and not get any results. Assuming I get results and get the dx of CVID, any advice on what questions I should ask or what I should expect bring the next step?? I also should be...
  • I was diagnosed about 7 months ago with CVID and live in Denver. I am not pleased with my doctor and was hoping someone might have a recommendation for one in the Denver area.Thanks
  • Hi,My husband has an immunodeficiency and has been infusing weekly Hizentra (after IVIG was successful but had extreme side effects); he's currently having his 5th infusion. I'm now doing it by myself (preparing it, injecting it, etc.) but I have a question that is stumping me.The infusion nurse walked me through the process, which involves using the vented spikes: attach 1 vented spike to...
  • Hi, My husband has an immunodeficiency and has been infusing weekly Hizentra (after IVIG was successful but had extreme side effects); he's currently having his 5th infusion. I'm now doing it by myself (preparing it, injecting it, etc.) but I have a question that is stumping me. The infusion nurse walked me through the process, which involves using the vented spikes: attach 1 vented spike to...
  • i went off infusions in Feb after 6 months of lousy exp. and a mayo doc suggesting we try to go off and see how i would do.I began having crazy infections: viral, bacterial, fungal. In fact, I have a fungal infection now so rare that the recorded patient cases are only 17 worldwide. This fungus comes mixed in with a product Monsanto makes to kill nemotodes on plants. so for you gardeners out...
  • nicholeu

    New to the board

    Hi everyone. I'm nichole and I'm pretty sure I am in right place. I think I likely have CVID. A little about me---Im 32, nurse practitioner, wife, mother of 3. Been fairly healthy my whole life (which I am learning is quite rare with this disorder). I had chronic infections as a kid---improved after tonsils, adnoids, and tubes. I was good until age 13 when I had ITP (platelet count less than 10)....
  • I wrote under the topic "Possible Gammagard side effects" about the symptoms I've been experiencing since beginning subq infusions in late January, 2016, an itchy raised rash on my forearm that does not go away, andmore life-disruptinga bad recurring headache that has been waking me during the night.But someone generously replying to my post raised an interesting subject that I think affects many...
  • My internist (not immunologist) told me to begin substituting Claritin for the Benadryl I was using as a premed to my weekly subQ infusion of Gamunex C. The Benadryl in combination with Lunesta (for sleep) was too much and had made me woozy all of the next day, and there is recent news regarding Benadryl and it's possible connection with brain shrinkage. So 2 weeks ago I did substitute it but...