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.
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 a doctor office or hospital. It's hard to believe that the day is already here. I have been anticipating this day for months. I am preparing for the worst, but hoping for the best. I am so very glad I have my mom going to my appointment with me to help ease my mind and give me reassurance. I am uncertain on how best to prepare other than be hydrated and take advil in advance. I really really hope I do not get any major side effects. I commonly get allergic reactions, so I am anticipating my body fighting this treatment. I feel like I will be okay with whatever happens, and I will be under good care.
I fully support sub-q... very few side effects in general! I had a bad side effect with IVIG-- so I too was nervous. However, things went and have been going fine-- and are supposed to go smoothly according to empirical research as well.
So, I think that if you drink water and manage your stress, then honestly, i think you will be fine :)
Small note: sometimes, I get a bump or redness/ itchiness around the infusion site. This is normal in my opinion because mine almost always goes away within an hour or so or eased with a bit of ice or a slower pump rate.
Also, although sometimes this site has been active in the past, most of the cvid support groups have moved to closed Facebook groups at the moment. I posted the post below and got a bunch of responses. Happy to support, good luck!