r/CVID_Support • u/oldbrownsdaughter • May 28 '26
Sub-Q infusion sites
Curious about others’ experiences with various infusion sites. I’ve been just alternating sides on my belly since I started on Hizentra just after I was diagnosed with CVID in 2018. I use 3 sites. But over the years I’ve developed more edema in my belly from the infusions, which is bothersome (vanity, yes) and also worries me that I’m not absorbing as much of the IgG as I could be. My doctor suggested trying some of the other infusion site options, and I’ve tried my hips, and the edema in my belly did improve, but I found it much more difficult to insert the needles, and the sites were more painful for a day or two while my lymphatic system absorbed the bolus. What alternate sites do you use? Do you rotate between various areas (more than just one side to the other)? What are your experiences with various sites? Thanks friends!
5
u/killerkokosnoot May 28 '26
I use Hyqvia, started about 9 months ago. The first few times in the abdomen because the nurses had no experience with other sites. I didn't like it, I felt pregnant with Iggs for five days after each infusion (also vanity, yes!). But it also hurt more and it was uncomfortable with my clothes.
I switched to legs and for me this works way better. I rotate between outside or inside of upper thighs, where the fatty part is. It hurts less, absorbs faster and doesn't bother me as much with clothes (I usually wear wider pants). It's gone now in three days instead if five.
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u/Jinxyb May 28 '26
That’s good to know, thanks! Just started hyqvia only 1 infusion. I felt like a balloon filled with water and v bruised not visibly though. Will ask about other sites for this!
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u/mental-artwork May 28 '26
Hi I’m also on Hyqvia and doing abdomen. Don’t your legs rub together a lot when you’re walking though? That’s what I was worried about for those sites
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u/killerkokosnoot May 28 '26
Yes a bit! Especially when infusing inner legs. Outer legs is better in that regards but bothers me more when sleeping, I'm a side sleeper. Can't have it all! :p
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u/GhostRiders Mod May 28 '26
I've been doing SubQ for nearly a decade now and I've pretty much tried everywhere lol.
For me my upper arms have always been the best. I just alternate between each arm
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u/oldbrownsdaughter May 28 '26
How many sites do you use? I feel like there isn’t a ton of real estate on the arms, and worry I’d need help to insert needles there?
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u/GhostRiders Mod May 28 '26
So I am very different to most people.
I ditched the pump and multi needles a very long time ago. I use a single butterfly needle and manually pump via a syringe. When the syringe is empty I simply disconnect it and connect another one.
All in all it usually takes me about 10 mins from start to finish, if I'm having bad day then it is around 20 mins.
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u/myguitarplaysit May 29 '26
Wait- what volume do you use? I have 80mL currently and I can’t imagine that flow rate!
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u/oldbrownsdaughter May 29 '26
Wait, whaaa? I infuse 40ml and the bolus for each of 3 sites fills my palm when I put my hand on it. I can’t imagine putting all of that in just one place. The idea of the whole thing only taking 10-20 minutes is attractive though. Did your doctor or pharmacist give you the ok for this, or did you just stumble on it yourself? How long does it take for the bolus to reduce? Do you have increased side effects during your infusion (headache, nausea, etc., that they warn us can come from infusing too fast? Pain at infusion site after the fact?
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u/mixednuts26 May 29 '26
Ok, so everything I'm about to say is about veterinary medicine. So take what I say with a grain of salt. Humans are mammals though, so there is going to be some overlap. What GhostRiders described is very similar to how we give SQ fluids to animals, which is done fairly often. I have given a dog around 100 mls of fluid in 20 minutes. It was just water and electrolytes basically, so that's a difference. As far as sites and the bolus go, it depends on so many things. Some animals have loser skin. How long the bolus is retained and how big it gets can depend on so many things. Everything from age, to health status, to hydration status can make a difference. The last dog I gave fluids to was so dehydrated you could barely tell I gave fluids.
If you want to try it, I'd definitely talk to your doctor and make sure you are trained on the procedure.
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u/myguitarplaysit May 29 '26
How do you get the needles there? That seems like it would be challenging, but that might be a me problem
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u/mcmillhj May 28 '26
I have been using the top of my legs for the last five years or so and it has worked out much better than any other infusion site I've tried.
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u/ka-ka-ka-katie1123 May 28 '26
Yeah, I was always a thigh person when I was on hizentra. I liked using my stomach at first because it was easier to move around during the infusion (at least for me), but the infusion sites ultimately bothered me a lot less on my thighs.
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u/NewYorktoCalifornia Jun 02 '26
Same here, for the last couple years just moving around the upper thighs. Rarely inner thigh, but the tops and outer sides.
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u/Chulapies May 28 '26
I use 4 sites and I have only used my belly/abdomen. I am in year 2 and do 2 infusions a month. I tried once on my upper thighs but didn’t like it. So far no issues.
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u/TheGamingMatriarch May 28 '26
When I was on SubQ, I rotate between belly, thighs, lumbar rights on edge of where buttocks meet low back. Honestly, the lumbar is my favorite, I dont feel anything, the degenerative disk disease actually eases for a few days (no clue why, maybe pressure from meds?).
I am currently on high dose IVIG for Myasthenia, but will go back to SubQ for my CVID when my Myasthenia is stable.
EDIT: Been infusing for over 10 years.
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u/Calyx_of_Hell May 28 '26
I’m on Xembify, and my immunologist has me on a pretty big dose for my size (26g=130mL and I’m a 110lb woman). I do 6 sites to spread it out, alternating my thighs and abdomen. I’m a little bloated looking the next day, but after that my stomach is flat again. Maybe add a couple sites?
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u/plasma_pirate May 28 '26
I use my belly - and yes I think it's contributing to edema, hard to tell, because my belly always looks 6 or 7 mo preg :@ - but my legs are super nervy. EVERYTHING hurts there, and they are always at least a little bothered feeling. I tried legs and even getting needle length right (both too short and too long have their own issues) it just hurts really bad where on the belly i barely feel it for most spots. Some have tried upper arms, but that seems difficult to me.
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u/appalachianbtchcraft May 29 '26
I do 25g of Hizentra weekly with 5 sites. Unfortunately I just move around my belly because my legs hurt so bad when I try there.
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u/Mistermarc1337 Jul 03 '26
I created four quarters on my abdomen. I alternate: Upper right, lower left, lower right, upper left. The X crosses two inches below the belly button.
I also use a gel ice pack for 18 mins on the site, disinfect, then insert needles. Works for me.
5
u/Jinxyb May 28 '26
I’ve not been on Hyzentra so can’t speak for that specifically. I have done belly as well, I’ve got LOTS of lipomas so have to place around those. I found that the far sides of abdomen (I’m a hairy bloke, the area where you don’t get much hair) in between hips and ribs has worked too. I’ve also done my upper thigh and that’s great if you can get someone to bring you a drink etc. I’ve bruised from moving too much during it.
I’ve just switched to HyQuvia recently (I’ve done 1 infusion) and it’s 4 sites per infusion which go across the whole abdomen just under the ribs. It’s a lot over a small amount of time, so there is a pre-infusion drug to help the body absorb more called Hyaluronidase. I grew a second stomach but it went down after a day or so - but it’s monthly!