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Hypogammaglobulinemia

Autoimmune Diseases | Last Active: Apr 2 2:16pm | Replies (77)

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@ldestella

Hello- I have this...it’s also known as CVID or common variable immune deficiency with predominant B cell damage. I had to advocate for myself also until an infection hospitalized me! U need to see a IMMUNOLOGIST/allergy doc!!! They will, to ck ur immunity, give u either a pneumonia shot or even tetanus shot (very little) to see how ur immune system reacts. Mine barely did so I was put on human gamma globulins every four weeks...this is a lifetime process. In 4 yrs I have been on 103 antibiotics, as they r the tx for this dz! Now, I know how I got mine n would love to pick ur brain on s/s that u have if ok. I am disabled now but am a RN n have a MPH
Lisa

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Replies to "Hello- I have this...it’s also known as CVID or common variable immune deficiency with predominant B..."

I have been diagnosed with CVID also, after they diagnosed me with MAC. MAC often occurs in people with compromised immune system, so they check your immunity as part of MAC workup-- turns out I had low gamma globulins so they they looked at my vaccine reactions. Now, I do scig (gamma globulin from pooled plasma, that I infuse myself with) every week-- which brings my gamma globulin levels ups to the middle of normal reference range, I highly recommend SCIG instead of IVIG because you do it more often and put a lot less in your body at one time so there fewer side effects. I was very worried I would not react to the Covid moderna vaccine--but I had my titer tested and I did. I made a ton of IgG antibodies to the Moderna vax. Yay.

Hi Lisa, thanks for the response. It’s really helpful to hear how this disease impacts ur life. I don’t know what s/s means exactly? If you could explain a little that’d be great. Your welcome to pick my brain. I’m so happy I found this group considering I’ve gotten more answer here verses any doctors yet. I don’t even really understand why I needed to be checked for multiple melanoma to be honest. I wonder if this is a generic disorder & if I need to have my kids checked too. I had a terrible bout of pneumonia about 5 yrs ago when I went to see my mother in another state. It landed me in the hospital there for 6days on oxygen. I currently have asthma & have since age 13. I struggle with breathing problems already so getting that shot would not be on top of my list. I’ve had the tetanus shot & never had a reaction in the past that I can remember. I suppose I need to find me an immunologist.
Autumn