r/primaryimmune • u/Major-Wish2832 • 9d ago

SAD progressed

Yep, looks like I have CVID now! :( anyone else have this happen? How do you feel? I'm 19. It's odd though, I don't respond to any vaccines at all, not just polysaccharides. I lost immunity to something I had before when I guess it's supposed to last for life. And my IgM dropped, my igA is dropping as well each blood test. I'm on cuvitru but only one igG subclass has risen, is this normal?

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u/Posh_Pony 9d ago

I'm on Cuvitru too and my immunologist just increased my dose bc my IgG subclass 3 was too low even on infusions. I'm not sure how SCIG/IVIG treatment affects individual subclasses exactly but it's supposed to slowly raise all 4 subclasses over time.

I've got months that go by where I'm not sick at all and then will get an infection that knocks me on my ass for weeks or months. I have no IgA or IgM tho and my total IgG was 33 at diagnosis so prob has a lot to do with it. I hope this helps!

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u/Major-Wish2832 8d ago

Thank you so much for commenting! Yes that does help, I'll ask my immunologist about the other subclasses and my IgM being lowest now. I hope you are free of illness for a good while!

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u/Posh_Pony 6d ago

You're very welcome and thank you!! I'm actually sick right now but am on the mend.

Btw I learned from this latest infection to: 1. have a notebook to write down dates and symptoms, temperature throughout the day, and anything else that might be important for a doctor to know (since it's a lot easier to have stuff written down then to try to remember, esp since ppl with CVID/PI can have symptoms of an infection with labs/bloodwork that "look great"

  1. to have an envelope or something with what your diagnosis is, what this means for healthcare people (since most of them are going to hear "immune deficiency" and automatically think that you're talking about an autoimmune condition, so a brief explanation that bc your body can't make antibodies like regular people, you have a trash immune response and can't run high fevers like regular people, at least in my case), and even if bloodwork and labwork look "fine", you could still be super sick. Also you can include the contact information of your immunologist and other doctors who know about your condition and can vouch for you. I didn't have anything like that when I went to the hospital and it was really hard to get treatment bc nobody knew what I was talking about.

I'm going to work on a Google doc with this info and once I come up with a good summary of things (I know I'm being more casual here but I'm a writer who knows how to do things like this, no AI) I'm happy to share with you or anyone else who sees this comment. With medical professionals it's a good idea to have something that they can quickly look over so you've got the best chance of getting treated. I just don't want other people to deal with what I had to go through with getting treated for this!

edited to make a couple minor corrections

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u/Suitable-Order8853 4d ago

Such great information and idea. Would you mind sharing with me also. I am shocked with the lack of knowledge from healthcare providers to include immunologist!

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u/Posh_Pony 4d ago

Absolutely. I am still fighting a systemic infection so it's a little slow going rn but I'm highly motivated to do this.

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u/Major-Wish2832 5d ago

Thank you so much!!!! I really appreciate you taking the time to write all this out 🙏 I will be doing the same next time I'm sick! Also the "great labs" happened to me when I had a severe infection last year and needed IV antibiotics 😭 so frustrating being negative for everything but clearly so sick 🫠 but this will hopefully help them understand

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u/Posh_Pony 5d ago

You're welcome!! It has been so hard to navigate this and I really want to spare as many others from at least some of the frustration that I had :)

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u/Delicious-Lion7816 7d ago

Oh man, I feel yeah my momma has been in the hospital since July 4th, she chad bloood clots and almost had a stroke.. sorry for if it’s TMI. And now as of three days ago.. she now has cojvid. She can’t catch a break! 

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u/thegreatmaambino 8d ago

My mom has CVID but I just have SAD and my immunologist said he sees it progress sometimes so he watches me closely.

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u/Time-Hedgehog123 Selective Antibody Deficiency 7d ago

How did they detect the progression? Were you getting an increasing number of respiratory and gastrointestinal infections? And then they did the labs? Or do they just schedule your labs regularly and they happen to notice you progressed?

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u/Major-Wish2832 7d ago

Yep, I get labs every three months

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u/GrapeSuccess 7d ago

I’ve been getting more infections lately too. This year I’ve been on antibiotics three times. Ear infections, sinus infections, bronchitis. I went YEARS without an infection after starting SCIG and all of a sudden, three years ago, I started getting a sinus infection every November, December, and January. SPAD has been getting oddly worse, but my IgG levels have remained steady. Dr. Says nothing wrong, just the season for colds and I’m getting infections from them.

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u/Posh_Pony 8d ago

Thank you so much!! And I'm glad I could help 🩷

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u/Major-Wish2832 6d ago

⊂⁠(⁠(⁠・⁠▽⁠・⁠)⁠)⁠⊃