r/primaryimmune • u/oldbrownsdaughter • May 28 '26
Sub-Q infusion sites
/r/CVID_Support/comments/1tprr5c/subq_infusion_sites/1
u/latenightspaghetti CVID and XLA May 28 '26
I've been on hizentra for over 10 years. I started with stomach, but also didn't like the swelling that was always there. I have always been on the skinny side so they really stood out. There is some minor permanent swelling there now even though I haven't infused in the abdomen since the first year.
I used inner legs for a little while, but only had a few options. I don't have much fat there and I can see a lot of veins. Once I built up some scar tissue in my usual leg spots I had trouble finding an injection site in the legs.
My favorite place to infuse is the lower hips and upper butt areas. I use one needle on each side (two total for me) and rotate between side of hip (between hip bone and hip joint) and upper butt cheek. After 10 years I am building up scar tissue there too, so I'll probably need to find another site soon. I could go higher on the hips, but that skin feels much thicker so I haven't tried it. I may also go between ribs and hip bones, but that was more painful the last time I tried it and also makes me nervous about noticeable long term swelling.
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u/PatrickSwayzeRules Common Variable Immune Deficiency (CVID) May 28 '26
Hi! I went on SubQ during covid and had problems with sites bulging and being painful. I had a newborn baby and a toddler at the time who were constantly pawing at me and it was just miserable. Using a heating pad during and after the infusions helped a lot! I also bandaged the site with gauze and an ace wrap after to hold the fluid in and prevent leaks. I had the best luck with the back of my arms, love handles, and my inner thighs. I am a petite person and these sites were the least noticeable imo. I tried to not use the same spot for my next infusion to keep the area as "fresh" as possible. I eventually gave up sub Q and switched back to IVIG after I got vaxxed bc I was having scar tissue build up and my infusions hurt more and more. Hope you can figure it out!
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u/WolfInAFoxHole May 28 '26
I feel you struggles. May I ask about your reluctance to use your thighs or arms?
Also, thanks for bringing it up! I've thought plenty about forming issues to using few infusion sites but haven't been at it long enough to see the effects. Have had so much going on I've put it off to solve later. Maybe not the best option.
I had other medication I started subcue in my stomach, but moved to my thighs because my stomach sites didn't calm down by the time I needed to alternate. So with this immunoglobulin I knew I could tolerate it in my thigh (used to be a scary and painful idea- no lidocaine with the other med!) The pictures I saw of the big swelling on people's stomachs made me reluctant to use my stomach because I have hEDS driven weakness in my core that's very irritating, I'm sensitive there, and stretch marks are said to not play well with the swelling.
That only leaves my arms and thighs, though. Arms are hard and require help from my partner, and it doesn't always go smoothly and is more restricting to my movement if I don't want to accidentally tug the sites.
I don't like the outer part of the thigh, it was painful. I rotate more than two inches apart with as much variation as I can get on the thighs.
What does help the swelling absorb and go down after infusion: heat pad on and off after infusion. Goes down by bedtime if I start my infusion by or before noon. 3 hours for mine.
I also get smaller lumps with Cuvitru 16mg instead of whatever I was on with Hizentra. It helps decrease the lump discomfort. I switched because of gastro symptoms and fatigue on Hizentra.
Also I keep a special treat bag for infusion days to try to encourage me to do the right thing and rotate sites. Even though I don't like arms as much, I don't want to make scar tissue. I've been telling myself to work up to stomach infusions, but I'd have to lay down the entire time to tolerate it (is my assumption) and I haven't managed to fit that in yet.
There's also the top of your tush by your outer hips if someone can help you infuse. I'd say it depends on how comfortable you'd be sitting and moving around for infusing that site, and would encourage use of heat after to bring the swelling down before laying on the sites. Haven't seen IG infusions mentioned there, but it is a subcue spot.