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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  • sscs123

    igg levels

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    I have been doing monthly subq hyquia since late 2015. At that time I was diagnosed with CVIG  by my current doctor I am seeing,  my igg levels were 440, my recent test was 660 igg. I am so frustrated with having to do the monthly subq's.   The first immunoglist that I went to said that  440 was considered boarder line CVID.  So I wonder if I should keep doing the monthly subq, or see...
  • Gregp136

    Insurance sucks!

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    Am struggling to get my Infusion approved again.  Get it every 28 days, but every 6 months the insurance company drags their feet and I have to call and call and call and call them.  It is never a case of questioning if I need it, because my blood work clearly shows I do.  Instead it is just delay tactics like asking for more documentation, or saying they didn't receive something.  And of...
  • Bear2beme

    Cvid

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    I was diagnosed with CVID about 6 months ago. There is little known about it other than very vague information.  I go to Rochester monthly for infusions and my doctor is trying to do a study on why some of us are getting this later in life.  I'm 47 and I find a lot of people do not understand what I go through with this. A friend found this group so I thought I would try it out.  I'm really...
  • 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...
  • PrincessButtercup

    Is CVID New?

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    It seems odd that so many people are getting diagnosed with CVID late in life. Does anyone know whether it's a relatively new discovery? I know it's older than AIDS, but I don't know much more than that. Just curious.
  • 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...
  • deleted_user

    Chronic Fatigue Syndrome and CVID

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    I am wondering if any of you have this diagnosis with your CVID? I am beginning to think this exhaustion I am feeling may have something to do with this. It is something I plan to bring up with the counselor I see this week but was curious if anyone else has experienced this. Thanks!
  • nicole2280

    Hyqvia and Exhaustion

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    I just started hyqvia three weeks ago. First dose I was okay and second I had headaches and I cannot get rid of the fatigue.  The fatigue is overwhelming. Does anybody else experience or has experienced this?  Thank you so much. I am a little worried.  
  • Just did my first dose 2 days ago.  I did it in my stomach (4 needles). I got sooo sleepy after and slept most of the day. I did get nausea and still getting it. Each day the tiredness is getting better. I suffer from chronic migraines, but didn't even get a headache. I did drink a lot of smart water before during and after.  The nausea has decreased my appetite a lot. (not complaining!)  I...
  • Gregp136

    Greeting all!

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    Hello everyone.  I will quickly tell my story since this is my first post. I was diagnosed with CVID in 1980, when I was 23.  I was giving blood, and I am A+.  They discovered I had no Anti B, which I should.  This led to the diagnosis.  It wasn't until later I started to get pneumonia, in the later 1980s.  Got it every few years, then every year.  Every doctor I went to get all excited...
  • 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...
  • 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...