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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  • shrink

    The disease itself

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    Can anyone please answer a question I don't understand please? I figured that the IVig would help me to fight off illnesses. Is it possible to get a flare up of symptoms (fatigue, pain all over, etc. just all by itself even if you are on Ivig? I mean being sick without it being from sinusitis or bronchitis. Just there by itself? Thank you
  • Suri

    Cvid since birth

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    Hey everyone! I am new and I was actually referred to this site because I am really starting to be physically and emotionally overwhelm with CVID. I was diagnose at 2 years old and have been receiving Ivig (Privigen) monthly since. I am now 26. I have been through sooo much with CVID. I don't know anyone who has it because it's so rare and at this point I'm happy to find this site and to know I'm...
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    Caregivers

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    Where is site for care givers? Thanks
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    Caregiver support group

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    How do we get to caregivers support group? Thank you Nina
  • nicholeu

    Is hizentra low IgA?

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    Hi I was wondering what you all know about the IgA content of Hizentra. I got a phone call from the company today. My order is for hizentra SQ. I thought I was going to need IV but apparently my doctor changed her mind. From what I've read seems SQ had less risk of systemic reactions.... But I'm wondering about the IgA content as my IgA is low and I'm told I need a low IgA product. Anyone on this...
  • Hi everyone,Im so glad I found this support group...there aren't very many people to talk to about cvid.my son was dagnosed 7 years ago and had received monthly IVIG until we recently switched to weekly sub-q. He receives 25ml for each treatment and our pharmacy recommended that we use 6 sites. That seemed like a lot of sticks each week so we decided to go with 5. Our immunologist though that...
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    changed

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    Does anyone know why this format changed? It was so much more person and warm the old way. I miss what was.
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    concern

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    One of my biggest concerns is that it has been suggested that Lamictal and other seizure drugs can be a cause of CVID and that the disease went away when they stopped the Lamictal. This would have great impact for people with CVID and to epileptics or bi-polar individuals. I think it may have been only one study but please tell me what you have heard about this and I will hopefully let it go....
  • Hi all,I am in Australia and been under my hematologist now for about 8 years. I have just started researching Mild CVID as I had a copy of his letter to my new doctor. I dont understand why he has offered no treatments to me. I have listed on his letter CD4 T-cell Lymphocytosis of Uncertain Significance. I have found out I have Ehlers Danlos, MTHFR, and a Thrombophilia mutation in this last...
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    Fatigue

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    I find that after I am active physically for a few days, I then have to pay for it for several days more. Is this the course of the disease? I have been on IV for i year, although the type, strength and frequency have been changed. Any insights or thoughts?
  • nicholeu

    Frustrated

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    My repeat scans for my lymphadenopathy was denied. I went to get the scan today and found out. It's now pending peer to peer from my doctor. What do u all do about work??? I work 5 days a week. I work regular business hours and am out of vacation time. I've had one week that was actually spent on vacation the rest has been used up with doctors visits, scans, tests, biopsies etc. (I get 3 weeks)...
  • I tested positive for mono and I have CVID. Does this mean I have mono too?
  • http://www.news-medical.net/news/20150423/Scientists-identify-missing-genetic-link-in-common-variable-immunodeficiency-disorder.aspx
  • There are new stundies that say lamictal can cause cvid. When the lamictal was removedoing the patients cvid dissaped.
  • 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...