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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  • agnesb13

    Hopefully close to some answers

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     Hello all, I am a 42 year old woman that has been sick consistently since November 2016.  I have had multiple bouts of bronchitis, upper respiratory infections and having fatigue, chest aches (Chest pain has been a constant nagging pain) etc.   I was on and off steroids and antibiotics at least 5 times between Novemeber and February.  Finally a dr ran tests for my immunoglobulin levels and...
  • blynn5

    leg and feet cramping

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    Hi All,I wa diagnosed about three years ago with CVID.  I have been doing sub-q Hizentra since then and really have had no problems.  The last few times, I have had my legs and/or feet want to start cramping.  I just did my infusion this last Tuesday and Thursday night I woke up with the worst leg cramps/charlie horse.  Has anyone else experienced anything like this?  Is it related to the...
  • AmyLouLoe

    SubQ begins tomorrow

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    I am so nervous. I begin subcutaneous treatment tomorrow. I was diagnosed with CVID a bit over a month ago. I am skipping IVIG based on how many major side effects most people report. I have to go to the doctors office tomorrow to be taught how to admister the transfusions and to have the doctor watch for side effects. I am really looking forward to doing treatments at home moving forward, versus...
  • CChris

    How long do flus last for you?

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    Hi all, I got a cold last week starting on Tuesday, then on Friday it turned into a sinus thing with a temperature around 99F, and since Sunday, my temperature has been fluctuating between 100-103F (37.5-39.5C). I am in bed and have ordered sinus meds-- but I am curious to know how long flus last for you? These are my symptoms: aching especially in the back of my head, sweaty, sinus headache...
  • stephisme

    Sinus Infection- Negative CT Scan

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    Hey everyone, About two months ago I had a pretty bad cold. Once the cold went away, I was left with what I thought was a sinus infection. Horrible sinus pressure, clicking/ringing in the ears, and some minor congestion. The headaches were so bad that I had to stop taking my RA meds so I could take prescription strength Advil twice a day. Urgent care gave me Biaxin for 10 days... no...
  • WriterWithoutWords

    Help, please, I need advice

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    Hi, so...I'm not good with people. Never have been really. Kids and older people, like my doctors, I'm great with them, but anyone else... I have a friend. I considered him a really close friend, he was practically my brother. He had to move away this year, far too. I get to visit in july, but I need him now. He used to make me feel better just by talking with me. Talking about anything, nothing,...
  • Zebrafan

    Depression with Vyvanse or Ambien?

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    I am one of the many people with a combination of issues on top of CVID.  Along with CFS, Epstein Barr flares, and in remission with Non-Hodkins lymphona.  The IVIG infusions have helped quite a bit, but I find lately my  biggest issue is fatigue.  My doctor wants to assure that I get a full nights sleep, so he prescribed me Ambien.  He also wanted me to try Vyvanse to help with focus and...
  • WriterWithoutWords

    Alone

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    Hello...so this is my first post on any kind of support site for CVID. I've never been super popular, never had a lot of friendss, or really more than a handful. I find myself without anyone to talk to. I can't figure out why I'm not sleeping. If it's my meds, fear of dreams, fear of nightmares, suppressed feelings, diet or what. I just can't. My mind or body on't let me. I just really don't know...
  • thesauce

    Dental work question for fellow CVID's

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    Hi. I have CVID and just found out I need either a tooth pulled or a root canal. Is there any precautions I should take before hand??Susan
  • raleanne

    Question

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    Is it normal to be sufferng from side effects 5 days after infusuions ?  I am feeling like this is enough already . I am on gammunex and I have cvid as well as IGA defieciency . I was premedicated with tylenol . For 5 days now I have not been able to function even with normal activities. I have had extreme fatigue and flu like symptoms , fever , headche , chills and rigors . Now my joints are...
  • WorriedWife

    My husband refuses to believe he has CVID

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    My husband was diagnosed with CVID in 2013. He received 4 IVIG treatment and we lost our insurance and he hasn't received any treatments since. Now here we are, 4 years later and although he hasn't had any infections (pneumonia, bronchitis or sinus infection) things are starting to change. When he was diagnosed in 2013 he weighed 147lbs. 2 months prior to official diagnosis he was 220lbs. After...
  • Northernelf1

    Peripheral Neuropathy

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    Mine is getting worse. I currently take amitriptyline at night – started to take it for mild neuropathy and my doc upped it to 25 mg and that has helped for awhile. It also helps me get back to sleep since I wake up a lot.Anyway, I seem to be getting what I would call “break through” neuropathy – I guess I am just getting more, it’s not as controlled as it was. I’m getting a little...
  • DomDom1984

    CVID & Retuximab

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    Hi, I am writing on behalf of my husband. He was diagnosed with CVID 5 years ago after getting pneumonia regularly. Despite regular infusions, he's been getting infections very frequently. Doctors in the UK have very little knowledge and experience of CVID. My husband is very ill at the moment and doctors suspect that his lungs are inflamed as a result of his condition. They are treating him...
  • laceyloo2

    Switching to Sub-Q

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    hello everyone, I'm reaching out in hope that maybe some of you can help me feel more comforted about this. I have been using IVIG for over five years, I have a port my sister is my infusion nurse, and we do it in my home every three weeks. I've become very comfortable with this routine. Recently the specialty pharmacy that I have always used, had continuously let us down and had either not...
  • SaoirseRed

    New to the board

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    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...