Thank you for your comments!

Somehow I failed to set up notification so I didn't see that some people had actually been posting comments. I have no idea how I overlooked that!


Thank you for the comments about IDF. I've been hanging out at primaryimmune.org since I started treatment and we're hoping to attend their conference next year. I also started subscribing to IG Living Magazine, I quite liked the first issue that I received a couple of weeks ago. I hadn't heard the 5% number for people who have problems with IVIG, we hadn't come across that in the information we had found. We were pretty paranoid when we first started learning what I probably had and thought SCIG was the best way to go.

We're not entirely happy with my immunologist. He's perfectly competent, but his main line is allergies, not immunology. There's not a lot in this area in that line, and we're probably going to be looking at finding another. I'd like to go to Mayo, I'm just disappointed that they don't have any immunologists in Phoenix as that's where I'm from and where my parents are, so free lodging! I'm also checking in to a couple of research programs through NIH though we seem to be having some communications problems.

One of our points of unhappiness is the diagnosis. It's obvious that I have CVID, but we don't think he's done enough to try to determine the cause. I'm particularly not happy that he doesn't seem concerned at the IG subclass report that shows all four of my numbers to be below 25% of the normal range. We're a little concerned that I could have an IgA reaction and that Vivaglobin, and thus SCIG, might not be the product/treatment that I should be on.

We didn't know about IVIG home care when we started researching this stuff. My current immunologist prefers SCIG, which is what we started with. So that's a possibility, we might have to finish out the initial six month approval under SCIG, then we'll probably check in to IVIG at home.


So thanks for the comments, I'll try to be more diligent about responding to them.