CVID- Seeking Advice and Allies

[jillian93]

Hello to the Forum-

My name is Jillian, 24 years old. I was diagnosed with CVID in May 2015 and have been doing weekly subQ injections of 50 mL (10 g) since July 2015. The infections have subsided for the most part, but I still feel like a bus hit me. I’ve tried talking to my patient advocate for infusions and also my doctor, but neither have answers. My IGG levels are where they should be; so all three of us are somewhat bewildered.

I’m overweight and I know that nutrition is such a large part of this, but I just can’t seem to find the motivation to eat better, which I know probably, sounds ridiculous. Any suggestions, tips or tricks?

I struggle to get out of bed in the morning because I am just so tired, I mean so tired that it’s making me exhausted thinking about it. Because of the fatigue, I quit school and my job in January. I’m trying to get another job, but it makes my eyes burn just thinking about it. I’m on vitamin B-100 complex and vitamin D3, so it’s not anything like that. Has anyone had similar symptoms and found a solution? Or are you just in the same boat?

I’m just looking for someone, or some people, who are having or have had the same experience. I have not yet met anyone who has this disease and my family struggles to understand what I’m going through.

Would just really love some feedback or someone to talk to at this point.

[floopyjim]

Hi Jillian,

Welcome to the forum. It is very common for people with a PID to have chronic fatigue symptoms and have an increase of fatigue after infusion. Like you, when I started on SCIG - infusing Subcuvia - I had awful fatigue, headaches and almost constant swelling at the infusion site. The only thing that helped me is changing my immunoglobulin product to a different one - Gammanorm. Since I changed, I still get tired before and after infusing but nowhere near as bad. I would talk to your immunologist about potentially changing the product to one that gives you less symptoms. Not all products are good for all people so changing them can be a common occurrence.

James.

[kane18]

Hi Jillian,

I can commiserate with you. I was diagnosed with CVID at 27 and have been receiving antibody replacement therapy for 3 years nearly. At first I felt great, as I was no longer getting frequently ill and my chronic cough disappeared however have noticed in the recent year I've been getting very tired too however it comes and goes, one day I'm exhausted and the next I am fine.
Unfortunately extreme tiredness and fatigue can be a common symptom of CVID you just have listen to your body and rest on the days you feel like this. One thing which has been beneficial for me personally is exercising, not only does it help with my breathing (as I also have bronchietisis) it makes me less tired in the long run (ironic I know!). As you have said nutrition does play a huge role but even small changes may help you notice a difference.

Hannah