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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  • I'm a lot discouraged; It's been just over three months and four treatments and I'm actually feeling worse!  I've met with the doc and he's all rah rah because my IgG levels are rising from 766 to 1423, but I don't feel good.  The only good news is that I am sleeping better...will the rest come?
  • Serenamoon

    CVID Emotional struggles

    Hi, I am new to this site and am hoping this will help more on the emotional side. I was diagnosed with CVID a month ago and have had a hard time with it. We struggled to find a diagnosis for six months so it is some relief to finally have an answer. I was apprehensive at first to tell close friends and family about CVID. Family has been better than expected, while friends have been an amazing...
  • barb4j

    CVID and Short of Breath

    Hello,Haven't been on here in a little while, I see they've changed things.
  • nicholeu


    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)...
  • Serenamoon

    CVID and the friends who walk away

    Hi all, today has been fairly emotional. For weeks now I have basically watched 99% of my friends walk out of my life after telling them of my CVID. They don't want to slow down and stay in for their friend who is always sick. They are busy out there living with out a care in the world while I was a depressing reminder that sick people exist. I have been in tears almost all day.
  • talaric4

    Elevated Liver Enzymes

    Hi Herd,I was wondering who all has struggled with elevated liver enzymes? I know I have posted about this before, but can't seem to find my oriignal post and more has happened since anyhow. Long story short. I was on Imuran for GLILD related to CVID and went into liver failure as a result three weeks later. I was obviously taken off Imuran and told me enzymes would/should normalized in 4-8...
  • Suri

    Cvid since birth

    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...
  • shrink

    The disease itself

    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
  • Guningya280

    Long term CVID (but new member)

    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...
  • Actually the most common symptoms of pelvic inflammatory disease patients is lower abdominal belly, lower abdominal pain and lumbar ache, often intensify after intercourse and menstrual period. The main treatment methods of pelvic inflammatory disease are drug therapy, physical therapy and surgical therapy. Drug treatment includes in taking medicine such as Fuyan pill, intravenous drips, enema,...
  • kelli1b

    I'm Baaack

    I know, it looks like all new people on here. I  was locked out of my account since they relaunched :(  I am trying to find all my old posts to share the links with all the newbies on here.  Soon!Kelli
  • megdombroski

    HyQvia Questions

    Hi All! I hope everyone is doing well today!I'm currently taking Gammagaurd SubQ and I'm thinking of making the change to HyQvia. I'm hoping that those of you who are on it could talk a little about your experience with it so far. How was your ramp up period? Did it take long for your body to adjust to the newer medication? Do you have any tips? Any advice/help would be so appreciated! 
  • Today I came from the doctor. Like I stated in a previous post I'm 26 and was diagnose with CVID at 2 years old. I'm still seeing a pediatrics doctor and this doctor seems to be the only one in this particular hospital that understand CVID. My health has worsen and today I found out that a Bone Marrow Transplant is an option for a "cure". This is some big news but scary at the same time. I don't...
  • susanhas3

    Sub-Q. How many sites? Bump size?

    Hi everyone,Im so glad I found this support group...there aren't very many people to talk to about 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...
  • nicholeu

    Is hizentra low IgA?

    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...