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.
ATOWifeofJason
I've had an immunoglobulin panel test a few years ago and was diagnosed with hypogammaglobulinemia. I have low IGg-across all sub-categories. I had years of battling bronchitis and finally got my tonsils out at 21. I am now 36. I had to get my immunity for Hep B checked for school and showed no immunity so they did a booster and still no immunity so my doctor had to write a letter explaining that I would probably not ever have immunity. Recently in the past year I have suffered from numerous sinus infections and a MRSA skin infection that lasted 4 months and required 4 antibiotics and Zyvox twice over a two month period to get it under control. I have recently over the past several months been sleeping and exhausted a lot. I come home from work and sleep 1-2 hours wake up and eat dinner and then take my nightly meds and go back to sleep between 8:30-10pm. I sleep until after 7am and I'm still tired. I am going to see my Hemotologist/Oncologist next week because I've had a productive cough and lots of congestion and green mucous from my nose over the past couple/few weeks. I want to have my immunoglobulins checked again (I think the overall level was 526 2-3 years ago). I've read that numerous respiratory, skin, bacterial infections can be problems associated with Hypogammaglobulinemia. What I am wondering is do our levels continue to decrease over time and with these recurring infection should I push for IVIG? My Infectious Disease doctor who handled the MRSA infection was concerned that I had not had any follow-up in years for the low IGg. A few years ago I had a hysterectomy and had a standing order from the Hem/Onc for IVIG if there was any indication of infection, but they did not give it to me because luckely I had no problems. Is there a certain level that is needed to warrant IVIG or is symptoms and low IGg enough? I am in the medical field but wanted to find out what you guys think. Would the IVIG help the fatigue as well as the infections or do you seem to notice a difference in energy levels after infusion?
Thanks for all of your replies and support. I have learned a tremendous amount from this group in the past few months.
Thanks for all of your replies and support. I have learned a tremendous amount from this group in the past few months.
kelli1b
I think, based on the numerous infections and the fatigue, its worth considering. At the very least have your levels checked again. IVIG - its tricky...it may or may not help: fatigue, gut issues and arthritis. My arthritis stuck around, luckily no gut issues and my fatigue...well, this was a bad week. BUT i am very blessed, I still work 9 hours a day. I have a lot of good days but I also lead a pretty strict life so that I don't wear myself down. I only sleep 7 hrs at a time...if your exhaustion feels out of the norm YES follow up. If your infections are out of the norm, taking multiple rounds of antibiotics, yes follow up....treatment could really improve your quality of life....LOL I just realized I could have said just that last sentence instead of rambling...sorry - hope its helpful :)
ATOWifeofJason
Thanks Kelli. I am definetly going to get re checked. Something has to give. Even if there is a chance of it helping I'm willing to give it a try.
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