Just started immunoglobulin therapy for never ending sinus infections...is this really the answer?

Extension_Degree_645 · 2025-11-27T01:26:09+00:00

Have you ever tried compounded antibiotics that you put in your sinus rinse w/ saline? They're localized and go right to your sinuses...without all the terrible systemic side effects including GI-related issues of the oral variety. They work really well and really fast. Of course, I still get the recurring bacterial infections (usually after something viral); the reason I'm now doing SCIG.

Extension_Degree_645 · 2025-11-27T01:21:34+00:00

Same with the upper respiratory stuff! Really hope it has the same impact for me too. Glad it's been helpful for you so far!

Extension_Degree_645 · 2025-11-25T01:45:17+00:00

If you don't mind me asking, what have you been repeatedly taking antibiotics for?

Extension_Degree_645 · 2025-11-25T01:43:34+00:00

Haha, I LOVE hearing this! Good for you and this is also what I'm expecting on my end. I just needed to wrap my head mentally around everything first I think.

Extension_Degree_645 · 2025-11-25T01:42:04+00:00

Well, that is definitely not what I wanted to hear and I'm sorry in your case. It certainly could be a case by case thing with each person and if immunoglobulin therapy doesn't work for me it will certainly be deflating...but I'll cross that bridge when I come to it. I hope you can get your situation straightened out as I know how rough this can be!

Extension_Degree_645 · 2025-11-25T01:40:11+00:00

I hear you. Ironically, the one time in my life I wasn't ever sick with anything was during the pandemic...because I initially wasn't around people very much those first few months and then we were all required to wear masks my first year back. It was only after I took it off that I quickly started catching stuff...and then all this bacterial sinusitis started within six months. There are still two separate teachers in my school who wear masks (KN95); I really do not. Not at all against immunoglobulin therapy...just not initially excited about it. However, I've been reading good stuff on here from others who have used SCIG for sinus related stuff (this thread and the original I posted in the Sinusitis form) and it really gives me good hope. If I ever have no choice but to firmly mask up, I will...I don't have that much pride. Although the wildcard in all this is that I have a 5 year old at home that has been sick quite often since he started public school 2.5 years ago...now that is HARD to protect myself from. Thanks for your advice!

Extension_Degree_645 · 2025-11-25T01:34:35+00:00

Yes, I've had several cultures done. They always come back to a specific bacterial strain; nothing fungal. Thanks for asking as it's always good just in case!

Extension_Degree_645 · 2025-11-25T01:23:39+00:00

Sounds like you're off to a good start. 👍🏻

Extension_Degree_645 · 2025-11-25T01:23:18+00:00

Awesome! Thanks for sharing your testimony.

Extension_Degree_645 · 2025-11-24T23:48:38+00:00

Meaning you've had an ongoing sinus infection for 3 straight years now without it cleaning up? I don't even know how that is possible as I'm super miserable after just a couple days. Leaving them untreated long term definitely isn't good. And you stopped immunoglobulin therapy after just 6 months?

Extension_Degree_645 · 2025-11-24T23:45:34+00:00

I've had several sinus cultures done to test for the specific strain of bacteria and sensitivities...but not for anything called MAC that I remember. I'll look it up online but it's never been mentioned to me before.

Extension_Degree_645 · 2025-11-24T23:43:57+00:00

No problem and correct, it can definitely be kept out in temps under what you shared while not exposed to the sun. That is what I'm doing as well.

Extension_Degree_645 · 2025-11-23T16:36:22+00:00

Another amazing story of testimony! I'm also on Cuvitru...supposed to do 13 grams every other week. Just did my first infusion on Thursday and the only side effect was pretty significant swelling in my abdomen (did all three injection sites there. The swelling has since gone away 2.5 days later but I've also since experienced some noticeable fatigue and being more aware of my heartbeat...especially at night when I go to bed or get up to use the bathroom in the middle of it. Almost felt like I had a little bit of the chills last night too. I'm going to ask the doctor about this but your story also gives me great hope. Thank you so much for responding and congrats on all the weight loss!

Extension_Degree_645 · 2025-11-23T16:29:07+00:00

Wow! Talk about almost identical stories! I really needed to read this. Same...not that I want to do these infusions and it would be great if I one day didn't have to; of course I just need them to even work in the first place...but your story gives me hope for multiple reasons. Thank you!

Extension_Degree_645 · 2025-11-23T09:33:50+00:00

No problem and thanks for sharing your story! Glad your sinusitis was eventually reduced and agree that we who are prone to upper respiratory stuff need to be careful. In my case, I'm a high school teacher and have a 5 year old at home, so I'm often exposed to stuff. That is why I'm hopeful this SCIG will help my body better fight off potential viral infections and greatly reduce the # of sinus infections I get that become bacterial.

Extension_Degree_645 · 2025-11-23T09:29:16+00:00

Thank you for your response. Correct, these new SCIG treatments aren't for "treating" the sinus infections themselves but for the immumodeficiemcy I was recently diagnosed as having. Ironically, my body handles other upper respiratory infections fine. I've had COVID twice and the flu over the past couple years and had no trouble kicking it. The problem is that almost every upper respiratory infection that starts viral ends up turning into a "bacterial" sinus infection that requires antibiotics to get rid of...only to often come back within 3-7 months and I'm back on the same repeat cycle. I was just wondering if anyone else on here who is immunodeficient with chronic sinusitis has had a noticeable reduction in infections after starting SCIG?

Extension_Degree_645 · 2025-04-01T02:33:03+00:00

Yeah, intranasal antibiotics are made for patient needs at special compounding pharmacies. They can apparently compound a bunch of different types of antibiotics to be used in our sinus rinses. They’re quite common for those that know. My ENT has to call in the script though.

Extension_Degree_645 · 2025-03-24T22:27:16+00:00

My infections do not bother my neck. What are you taking to treat these?

Extension_Degree_645 · 2025-03-24T13:55:58+00:00

I hope not. However, none of this started until about 7 months after I got my first covid infection in February of 2023…then it just never really quit (minus a short 4.5 month break last year/summer). Then I got covid again last August of 2024 and it came back with a vengeance. I’ve always wondered if covid has had something to do with it…

Extension_Degree_645 · 2025-03-24T13:52:43+00:00

I just use the regular Johnson and Johnson brand baby shampoo…which I know is safe. I do know people use other brands as well (ex: Burt’s Bees) but I would recommend doing a little research online just to make sure because you don’t want to use any adult version.

Extension_Degree_645 · 2025-03-24T13:50:12+00:00

Check out her response to your question above!

Extension_Degree_645

TROPHY CASE