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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  • MissSophie

    Hizentra & infections

    0
    Have been on Hizentra for a couple months & have several side effects.  But I am also having lots of infections.  Had a c-diff infection break through in Jan. when doctor tried to wean me off the Vanco.  Also a couple UTI's, and now my second sinus infection.  All within two months.  This is awful.  Doctor is looking into another form of IVIG.  Hope insurance co approves it soon.  
  • Sheriann

    Need Resources for Teen Daughters

    0
    I have two daughters who I'm 99% sure have CVID like me...makes me really sad; they should be enjoying the prime of their lives.  The oldest is in Nursing School and the youngest is a Junior in High School.  Both are super fit and ultra responsible.  It breaks my heart of think of them having this life-long disability.They've watched me struggle not only with headaches and not feeling well,...
  • sandea1

    Dust allergy - help me please

    0
    A few months back we moved into a new house. I was very excited with the carpeting on the floors. In our previous house, we had hardwood floors and it was very difficult to clean the floors. So when we moved into this house we were really happy since we had carpets and not hardwood floors. The problem is that my daughter has developed an allergy due to the dust mites in the carpet. She also has...
  • MissSophie

    Intolerance to IVIG?

    2
    Hello everyone.  Haven't posted for quite awhile, my body has been busy fighting IVIG.  Started out on Gammunex a couple years ago & had the normal headache then after about one year I started getting full blown rigors & nothing would stop them, so we had to stop went on to Octagam all was great for about 5 months then had such joint pain & headache felt like every bone in my body was broken &...
  • overstreet22

    Cuvitru

    6
    Anyone start Cuvitru yet? I'm in the process of switching over from Hizentra...interested in the lower osmolarity (since I infuse 80mL biweekly) and the higher IgA content. Just curious.
  • shrink

    periodic incontinence

    3
    Prior to and throughout my CVID disease, I get incontinence. This is different from stress incontinence. I start feeling sick (even on IVIG) and then urinate all over myself, the floor, whatever. I get no warning. Urine runs down my legs at times. Then I get better for awhile. Dip sticks show nothing and cultures rarely find anything. Anyone else? I need to know for my regular doctor how this is...
  • thesauce

    IgG4 Deficient

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    I'm 50 and was finally diagnosed with igg4 deficient. It was confirmed through the pneumonia vaccine. I have been sick for 2 years with daily (sometimes severe) nausea, can only eat bland food, stomach cramping, chronic sinus infections, asthma, I've lost 18 pounds, alopecia, extremely fatigued and hospitalized 2 times in the last year with pneumonia(in ICU). Is this common for an igg4...
  • SeamusB

    I need some help

    2
    hey people I've had CVID my whole life and I'm 17 now. The last couple of weeks have been real tough have been very sick and just feeling lifeless and restless. I'm scared and don't know what to do. I just wanna talk to somebody who understands.
  • SaoirseRed

    New to the board

    6
    Hello, I'm new here and haven't been officially diagnosed with CVID, but am currently seeing immunologists to figure out what's going on. I have a few questions but first, I'll tell you a bit about myself (and my wonderfully bright medical history, ha). Bare with me;) I'm a 32 year old female and I take pretty good care of myself and my body. Despite this, however, I get sick incredibly often...
  • Sheriann

    Liver Enzymes are Elevated

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    My Liver Enzymes have been elevated for my last few transfusions...like triple what they should be. I'm unclear as to what this means.  I feel fine.  I'm going in a week before my next Infusion for a blood draw to see what my levels are.  Anyone else have this issue?
  • ninagalpeerdanielson

    How does ANA apply to CVID?

    4
    I have been diagnosed with CVID but got a positive ANA. The doctor said that it didn't mean I had lupus because she didn't see other indicators. Right?
  • deleted_user

    Insurance company denied me...

    I was diagnosed 4 years ago with CVID and have been on treatments for 3 1/2 years. Out of no where my insurance company (evil Blue Cross Blue Shield) decided to cancel my coverage on my subq and has denied me any coverage at all!! They said that I have no proof that I need this treatment!! HELLO 3 1/2 year later! My levels were non-existent when I was diagnosed! Sorry i have to vent to people who...
  • ktscat

    Medical ID bracelet and company?

    1
    Now that I am starting infusions do I need a medical alert bracelet?  Do I go through a specific company for that and if so who do you reccomend?
  • Diane-M

    Recommendations

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    Hi all. For the first  time ever I have developed winter allergies. I'm being treated, but my eyes are sore, swollen and itchy. I've heard that air purifiers could help. Has anyone tried one? Had it helped?
  • I just started hyqvia 30 g and lost quite a bit of the med because it would not flow out of the vial into the poolong bag. I had to use a syringe to draw it out and made a mess. Does anyone have this issue? It is very frustrating. I tapped the bag, tube and vial to move air around. Opened and closed vents and clamps. Nothing would make it flow out.Feeling like a failure.Any advice would be...