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 was diagnosed with CVID approx 8 years ago. I was very sick with respiratory infections and could not get well. When I was first diagnosed by my immunologist I also got a second opinion by a dept head for Immunology at UAB medical and I also joined his clinical trial. he confirmed my diagnosis, said it was likely hereditary, gave me some good advice. Thus my CVID journey began, first with antibiotics every day for a year and IVG and then went to home infusions of Hizentra. I hate the infusions, i will be the first to admit that, I had difficulty getting over the diagnosis in the beginning but I started a program at the gym and started felling better, all the while still hating every single time i have to infuse. it's just really hard. that brings us to know. 4 months ago i told my my doctor i wanted to switch back to IVG instead of home sub-cutaneous infusions and all of the sudden after 8 years she decides to give me the summer off?? I was excited and grateful but I was Gob-smacked. I just did not understand after everything I was told in the beginning of this process. i.e. maintain the treatments for the rest of my life to boost my own immune system so i could stay well. now she is saying that i am off of the infusions indefintely becuase i havent been sick since last year and I dont like the infusions anyway so shes giving me a break and wants to see how it goes..WHAT??? i don't get it, what has changed between now and eight years ago. what is going to happen to my body now. i am so torn between being super excited but I also just don't understand her thought process. Is this dangerous or should I just go with it??
It really comes down to you - you know your body better than your doctor. It sounds like you have a pretty good routine. Stick to that routine for sure. It doesn’t hurt to get a second opinion. And, it may not hurt to wait and see what happens. But, cvid doesn’t gave a cure.
If you don’t mind me asking, what gym program do you follow? I was always an athlete and going to the gym but got away from it the last few years bc of the germs - I kept getting sick bc of the gym germs - no matter what I did to clean the equipment. Fatigue has been a huge issue for me and it’s all I can do to get through the work week. But, I miss working out. What do you do??
However, after going through a stressful divorce, my levels are dropping and I’m getting sick again so it’s time to get back on the meds.
My doctor explained that it’s more about how I feel and the number of infections rather than just simply the blood work. Why take something you don’t need? Even if it’s just for a few months, enjoy the break but keep an eye on you body and how you feel. If you have worrying symptoms, let your doc know.