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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  • ktscat

    Medical ID bracelet and company?

    3
    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?
  • SeamusB

    I need some help

    3
    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.
  • sscs123

    igg levels

    4
    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...
  • sscs123

    so tired of during my monthly sub q

    2
    I figured I could vent a bit on this site. I feel so tired and I know that I am already overdue for my next infusion, but I have been getting burned out, I have only been doing the subq for 1/1/2, and I sitting here actually trying to convience myself that maybe the sub
  • astocking

    Just diagnosed

    Good morning! I was just diagnosed CVID. I have extreme fatigue and nausea on a regular basis. My joint hurt occassionaly but mainly at night. I am going to see my specialist in the next few weeks for options on treatment. What treatment or meds have worked bet for you? Thannk you in advance for any advice.
  • Morgansmom

    Tachycardia and cvid

    0
    My daughter is 18, she has CVID. The only one in both our families. We have done all the testing with the cardiologist and theres no explanation on their end why her heart rate ranges 120-160. Said to check back with her Immunologist and PCM. She's on meds to slow her heart rate, just wondering if this is a CVID thing? 
  • Bear2beme

    Cvid

    9
    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...
  • CVMA

    Is this normal?

    0
    I have had 7 monthly IVIG treatments. My IgG was up to 580 from a low of 243. I was having a lot of good days with fatigue being manageable. I have hit a brick wall: a day or two of sleeping 16 hours then more frequent fatigue and recently overwhelming exhaustion after mowing or cleaning the grill. I'm looking for anyone who has experienced this. I don't know if this is disease or depression or...
  • stefann

    Weight loss

    1
    Hello,Just wanted to know if anyone else had this issue. I've only had two infusions and have noticed I've lost about 3-4lbs. My diet hasn't changed much except not drinking alcohol as much and eliminating dairy. Will my weight go back up after a few months once the ivig treatment starts working? Thanks for listening
  • sewer

    sewer

    0
    Is anyone taking Cuvitru for CVID?  I am taking 22 grams every two weeks.  Looking for someone to compare experiences with.  I am 70 years old and started treatment in July 2017.
  • Hi, Im 100% new to this or any site.  I just need info I can't get from Dr's.  Yes they study it but they don't live it,  big difference. My story is I've always gotten sick easy.  At one point I started throwing up every day for a year and a half.  One Dr went down my throat and said he didn't see any thing.  Gave a list of meds that didn't help. Problem was only getting worse so was...
  • stefann

    Had 2nd infusion

    5
    Hi everyone.  Just had second infusion last Thursday, this time around it seemed to go better no headaches.  Only things I've noticed this time is bouts of dizziness and no appetite at times a few days after.  Anyone else experience side effects like this? Wondering if after each infusion I may have different effects. Thanks!
  • 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...
  • deleted_user

    Chronic Fatigue Syndrome and CVID

    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!
  • kelli1b

    whats the difference between...

    hypogammaglobulenemia and CVID? I have no idea if I spelled it right lol. The stuff I read says that it is just another name for cvid...anyone wanna take a stab at it?