In June of 2011 I had an appointment with my immunologist. After much discussion, we decided to stop my IVIG infusions (at least temporarily) due to the fact that they were so negatively impacting my quality of life. Even after switching to Gammagard S/D as a weekly sub-Q treatment, I would still lose 2 days every week recuperating from my infusions. I was working full-time and switched my schedule to 10-hr days so I could have every Friday off to accommodate my 8-hr infusions. Every Saturday was spent in bed recuperating, and by Sunday I'd be able to walk around and have a less-intense headache than Saturday...basically every weekend sucked. To make matters worse, in order to keep the side effects minimal, I was on oral steroids the day of my infusion and the day after, and those steroids significantly impacted my mood and many aspects of my life. All-in-all, I was pretty miserable and often thought that I couldn't face a lifetime of infusions every week.
So we stopped the infusions and my Dr put me on daily prophylactic antibiotics. I now take 250 mg of Ceftin every day. It seems to work as well as the infusions at preventing infections. I'm getting sick at the same rate (about once a month), and when I'm not sick I feel pretty darn good (comparatively). I was afraid that my energy would drop off, but instead it's increased significantly. The combination being off of the Trileptal (which may have caused the CVID) and being off of my infusions also accommodates that nearly-impossible goal that will allow me to find out whether I was born with CVID or whether I had the right genetic makeup for Trileptal to trigger it in me. It will be good to know.
