Jenbeth, sorry you've been feeling rotten. The Gammagard (small does, which is why I do it weekly, rather than the monthly IVIG that landed me in the hospital) is the only new thing I've been taking. I will call the dermatologist (immunologist told me to) tomorrow, or my internist, who knows very little about CVID. But once I get settled on something, I hate the idea of changing. Really hoping I don't have to change, as there have been no infections. I could almost tolerate this if it doesn't get worse.

Again, good luck to you! Thanks for the advocacy role modeling!

Jenbeth - there is some acclimation time when switching from IVIG to subq. I almost gave up when I switched. Took about 6 weeks of horrible fatigue before it just suddenly stopped.

I called my dermatologist's office (my next appt is 8/10) to report the probably hives/itchy bumps/bruising reaction, and the earliest I can see him is June 29th! 6 1/2 weeks. (He always tells me just to call if I need to come in between appts, but there are never any openings. Disconnect between him and his office. I even asked if there was a secret word to use in trying to get an appt! Merry laughter all around, but no, no secret word.)

So now, I guess I'll have to call my internist, who knows nothing about Gammagard or CVID, except that I was always sick before being diagnosed. DOCTOR ROULETTE. But the reaction has been going on for a couple of months, so I'm assuming it's not dangerous.

I really thought the immunologist would basically be taking over the whole CVID treatment thing, but he seems to have been mostly just the guy prescribing the treatment. :::sigh:::

Thanks for listening.

What I have found is that typically immuno's ONLY take care of the IGG while we go to our family docs for all infections and they are the one's who can get you in quicker.

Now an itchy rash can be a side effect of ALL IGG (which is why they give us benadryl as a premed) and one I would think your immuno would want to hear about. It could also absolutely explain headaches. I had to adjust my flow rate tubing once before as I thought I was super cool and jumped to an F900 flow and had migraines for a month until a light clicked and I dropped back down to F600, boom, problem solved lol

Just a random question, after your aseptic meningitis and now you're having a rash, have you been checked for anti-iga antibodies?

Kelli, I don't know about the IGA antibody thing, but I will definitely ask my rheumatologist next month about testing it. He seems to be the brains behind all this. (He's the one who originally ordered IgG testing years ago, and then the serotype testing last fall.)

As for flow, I have a simple Flow-Meter thing that I set at 4. Different from yours. I am getting only 8 grams a week, though it ends up being 4 bottles of Gammagard.

Meanwhile, feeling a little paralyzed (not literally) by the bruising/itchy bumps/hives thing. It seems obvious that it's connected to the infusions, but changing seems overwhelming just now. (On a deadline to finish the first novel in a new series for kids.)

So I used a freedom pump with my gammagard, its a wind up thing. Sounds like you have something different. Perhaps talk to your doc about it as well (infusion speed). I'm on an electric pump now with my hyqvia and I spiked a 101 fever simply from only taking half of my premed and speeding up my infuison. So rate can matter even with subq. I would suggest also talking to him about your premed regimen. Hang in there, it does get better. Switching sounds super simple, but it can increase the risk of reactions.

I wish there was a like button for your posts kelli1b!. Sounds like you have a few questions that need to be addressed by your Immuno. I specifically asked my Immuno if I should see him for suspected infections, if I need to be tested for anti iga Antibodies. He said I could see him for infections and I actually have abx on hand if I need it. I can usually get in to him right away. I had been a patient of his for allergies for years before I was diagnosed with cvid this past December.

Sounds like rate could be a factor along with pre meds. I use f600 tubing. I do get red and slightly swollen with my sq. it does itch but it goes away in a few days. I infuse 30g every two weeks.

I switched to sq end of March. Felt really good for several weeks after. Just last few weeks been real tired again. Can't stay awake in afternoon. Driving especially makes it difficult to stay awake. Also had increase in some pain. Told my Immuno and he increased my dose. Seems like I read that sq does is sometime greater than IV dose? My gammunex literature from he manufacturer says 1.37X the IV dose.

I think what your referring to is the calculation that is used to determine your dose when transitioning from IVIG to SubQ. I just went from 48g to 50g when I switched to HyQvia and already noticed a reduction in the number of my sinus infections. There really is no "max" dose. They typically look at your labs and how your health is and use that to determine dosing. I have read that you are a higher risk of clotting if your IGG is over 1600 though.

Thanks Kelli for your reply. When I transitioned to sq I had not worked up to my full dose of IVIG. They planned to get me to 60g. I got to 40g then was switched. So then they did 30g sq every 2 weeks. 1st sq was end of March. Felt really good for most of April.

Last 2-3 weeks been really tired in the afternoons. So I quit working out because I had the extreme fatigue I had before starting treatment. Could not stay awake especially in afternoons, just about falling asleep while driving scared me so I called this Monday and asked for an increase in dose.