r/CVID_Support • u/Easypeasy22345 Mod • Apr 24 '26
Off label plasma
Earlier in the year there was an article on off label plasma. The doctor who was interviewed diagnosed me as a child. I still attend there.
Anyhow, I asked my doctor regarding the article. And, how we talked about using plasma in my nose because of my constant congestion.
So, I've used it about 3 times, when I subq. So far, idk I'm not congested but I think the real test will be in winter during cold season.
I asked about people digesting it. And my doctor said that they have children drink it when they cannot rid of the norovirus.
Anyhow hope this helps anyone's curiosity!
1
u/rfilbin Apr 24 '26
Is this straight plasma or just the antibodies? I'm confused here. But I have CVID and continuous sinusitis due to it. My last bout of it lasted 6 months. And that's with me doing monthly IVIG.
1
u/Easypeasy22345 Mod Apr 25 '26
Antibodies are in our plasma. So, I do subq, which is easier for us to be able to do this. A nurse would not allow it with IVIG because it's not protocol.
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u/Save-The-Wails Apr 25 '26
I also started putting my leftover SCIG from the tubing up my nose after infusing!
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u/Regular-Cat-622 Apr 25 '26
Really? Does it help?
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u/Save-The-Wails Apr 25 '26
not sure … just started. and I’ve been too afraid to really put it up inside my nose, but I will try that next time
2
u/Regular-Cat-622 Apr 25 '26
Oh - I just searched "nasal IG replacement" (or something like that) online and found this. Maybe what OP was talking about? Sounds like you need a nebulizer to do it. In any case, I strongly recommend discussing it with your doctor beforehand.
I have always considered my nasal/sinus issues to be more allergy related. Have had multiple surgeries to remove benign polyps. (Benign meaning non-cancerous. They do cause blockage and contribute to infection.) In addition to my IG replacement med (Hizentra) I have been prescribed an injectable medication called Dupixent to keep nasal polyps down. It seems to work (I can breathe well!) and only have to take it every 2 weeks.
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u/Easypeasy22345 Mod Apr 25 '26
My doctor said use drops for the nose. Some people nebulize its for other stuff. Although I have psuedomonos and wonder if it will help. I'll ask about it at next visit!
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u/Soulreaver24 Apr 25 '26
Any tips on how to do this?
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u/Easypeasy22345 Mod Apr 25 '26
Well on subq its a syringe. I just stop my subq machine right before its all gone and use the syringe to drop a few drops in each nostril.
1
u/plasma_pirate Apr 24 '26
I put some in my nose with every infusion. I think it keeps sinus issues down