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.
Hello everyone,
My name is Taylor and I was diagnosed with CVID in March of 2015. I am currently in graduate school to become a school psychologist, I'm 24 years old. I have recently been using Hyzentra sub q for my immunoglobulin replacement and I must say it has its pros and cons. My doctor took me off of IVIG due to vein issues as well as side effects from the heavy dose. Sub q definitly doesn't make me feel as crumby as IVIG but the fact that I have to do it once a week is discouraging and so difficult. I have really been struggling with needle anxiety, which is strange because I have been poked my entire life..but for some reason I have extreme anxiety when I need to put the needles in myself. I have a pretty high dose of hyzentra(15 grams) which requires 4 sites so it literally takes me an hour to talk myself into inserting the needles sometimes. I just started icing the sites before hand which help with the pinch but does anyone have any other tricks or ideas? I use my legs, stomach, and back for sites. I am just in need of some encouragement I guess, I am frustrated and still a bit angry with my diagnosis. My levels without immunoglobulin replacement are low, IgG-200 IgA-19 IgM-45 so basically I will never be coming off the therapy, how did you guys really accept your fate? I still have a hope for a cure so deeply but I know it is far away. If you read this thank you for your time and I hope your strength is up and immunity is up even more!
Having CVID can be challenging but it sounds like you're doing a great job of balancing the disease and your life. It's wonderful that you're in graduate school and it sounds like you have a bright future ahead of you :)
I still do IVIG, but I have a friend that does SubQ and she gets a numbing cream prescribed by her Dr that she uses about one hour before she is going to insert her needles so there is no pain. Perhaps you can talk to your immunologist or specialty pharmacy about having a numbing cream prescribed so that the anxiety/pain associated with the needles is lessened?
I don't know if that helped, but I wish you all the best...