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

     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...
  • raleanne

    How was your week ?

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    Thought  I might start a thread that we can just sign in and whatever our day is , share it with others. Life with any chronic illness can have its ups and downs ... not all days good nor all days bad . How is your day ? How was your week ? I will try and post how was your week every Friday . Please join in . I received my 3rd treatment Ivig about a week ago on a new brand . I had a few ug...
  • raleanne

    Where is everybody ?

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    I haven't checked in in a while , but seems this forum is quite inactive ? Is there another forum for cvid members ? I would love to see that people have somewhere to come or go to for support. It is so helpful talking to other people going through this . Is anyone aware of other Cvid or Iga deficiency support groups ? Thanks .  
  • Northernelf1

    Ulcers ?

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    Ok - I'll start a new thread.Anyone have issues with duodenal/peptic ulcers ?That's my latest, at first docs thought it was kidney stones but turns out it ulcers. I actually think I've been dealing with this for some time, it just got quite worse (painful !). Waiting for a scope in the next day or so. Ugh.
  • 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...
  • tstrong824

    Hyzentra issues

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    Hello my fellow zebras. I just recently had to go to the emergency room for anaphylaxis(swollen everything and couldn't breathe) after my weekly Hyzentra dose. Now I have a high dose of 75 ml every week but I have been using hyzentra for about 6 months now and Igg products for around 3 years. I never reacted well with my Ivig, always had severe headaches and stomach issues. I believed the...
  • Khemalizer

    Surviving the monster

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    Hi everyone. I'm 34years. I was diagnosed with civd in 2004 after being sick my entire life. I started monthly iv treatment mid 2004 till 2009. Afterwards I lost my medical insurance and relied on exercise, supplements and immediate antibiotics whenever I got sick. My next iv was mid 2012. In 2014 I started getting iv once every 6 months till today. I take supplements, exercise and wear a...
  • hereformymom

    Hizentra- bone issues

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    hello! My mom started Hizentra a year ago for CVID and not only has severe bone issues and pain now but broke her hip just when walking! Has anyone else had similar issues with this medication???thanks!
  • megan801

    Getting help

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    Hello. I was diagnosed with CVID in April of 2016. I have low igg levels and low iga levels. My doctor did the pneumovax vaccine test and my body had no response to the vaccine at all. I have problems with IBS such as diarrhea and nausea. I also have bad reflux on a regular basis. Don't know if this is related though. I feel that I get sick more than the regular person but it hasn't put me in the...
  • QueenMA

    New to group

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    Hello to allI was diagnosed with CVID this summer. I went in for my annual appointment with the Rheumatologist that I've seen for about 4 years (for undifferentiated poly arthritis...or they just don't know!) and since the Plaquenil I have used for that time seemed to not be working any longer he decided to do some additional testing and found my IGG and IGM levels subnormal and my IGA level low...
  • Keepsmilling

    New group member CVID

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    hi everyone. Just want to say hi. I'm 40 years old and I was diagnosed with CVID back in 2008. It's been over 9 years now. I get IVIG treatment infusions every 3 weeks for almost 10 years now. I hope to get a chance to share information, stories, support with everyone and I hope to get support as well. I have to admit that its a frustrating condition but it's definitely maneagable over time. I'm...
  • saowensRN

    CVID

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    Hello everyone!! I have such a broad array of feelings at this to have finally found a group of people who also suffer from CVID.  I was diagnosed with PID 4 years ago and specifically CVID a year ago. I had a successful run with sub q Ig, then changed insurance companies and have been denied tratments for almost 3 months.  I am really beginning to feel alone in a way I never have before.  I'm...
  • shrink

    Daily Igg injections

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    I read somewhere that there is a way to give yourself an injection infusion every day. Has anyone heard of this?
  • Sheriann

    Getting Fevers

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    I missed an Infusion and am already having side effects; I'm not sleeping, I'm getting fevers every afternoon despite taking Aleve, Advil or Tylenol.  The Octagam has made me sick for the past three times...within a few days I'm in bed with flu-like sypmtoms for two days.  Despite giving me steriods, Aleve and a plethora of other meds, I still become ill.So they are changing up what they give...
  • pathoma

    Does this sound like CVID ?

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     I have another diagnosed AI disease, but not on meds that supress the immune system and can cuase low Ig's.   I have been getting lots of infections that last a long time and require lots of meds to treat but no pneumona or bronchitis.  I had labs done that showed an IgA of 53 (87-397) and my IgG of 660 (700-1600).  Im constantly very fatigued and I feel like something the cat dragged in...