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.

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thesauce 10/01/2018

I just switched from Sub-q to IVIG. I did Sub-q (Hizentra) for a year. I never felt good and had bad side effects all year. I had to see a new doctor because my doctor wouldn't switch me. He said he didn't like dealing with my insurance. He said I need to suck it up and not rock the boat. So I went to a new doctor at U of M. She got it approved in a week. I had my first IVIG (Gamunex-c) last thursday. OMG it was heaven compaired to sub-q. I did get super sleepy and flu like for 3 days after, but there is no pain, no huge lumps that never go away, or total stomach swelling! I never want to go back to sub-q.

How long until I start to get energy?? My family keeps asking me if I am feeling great yet. Does it take several infusions before you really start to get energy??

sonnycamehome 10/01/2018

Hey there! So glad to hear that IVIG was successful for you! I've been on IVIG for several years and much prefer it to SubQ as well. I don't know how long you've been receiving treatments, including your Hizentra, but generally, it can take a good 6 months to a year to get the full benefits of treatment. That doesn't mean you won't feel better along the way, it just means you may not feel the full effects of treatment for about a year.

Be open with your Dr about how your feeling so that s/he can make dose adjustments as necessary, and also let your Dr know that you were feeling poorly for 3 days after your infusion. Your Dr may be able to adjust your pre-meds and rate of infusion so some of those side effects are lessened. I'm sure you already know this, but make sure to drink TONS of fluids during your infusions as well.

Wishing you all the best :)

thesauce 10/01/2018

Thanks for replying. I had been doing sub-q Hizentra for 15 months. Never had energy for felt good (nausea, food intolerance) the whole time. My numbers onlu went up slightly.

Thank you so much for your input.

ash101881 10/03/2018

Yes!! I think it’s 1-3 months before you start feeling AMAZING. However it will get better and better each time you do it. I had horrible side effects and no energy until I went to Ivig, slowed the rate way down and divided my monthly dose into 4 doses. I get ivig once a week(wayyyy better!!!) and over 9 hours. I look forward to my infusion day every week bc by the 5th or 6th day I can tell it’s time for my infusion

ash101881 10/03/2018

Oh and I use kroger specialty infusion company that comes to my house. Iv Benadryl is awesome too!!! Helps with my nausea so I’m able to eat on those days. Because of my history of side effects and reactions I get iv Benadryl twice during the infusion

thesauce 10/03/2018

Thanks for replying. I am frustrated because everybody is constantly watching me and asking if I feel good. When I say no, they act annoyed and say IVIG isn't working either. I'm not getting upset, but everyone else is! IVIG was heaven compared to Sub-q. With Sub-q, my stomach was huge with lumps and pain all the time. I keep touching my stomach and enjoying it being flat and no pain!

Is it cheaper to have a nurse come to your house???

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