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Treatment for (low) IgA deficiency
Blood Cancers & Disorders | Last Active: May 8 12:59pm | Replies (19)Comment receiving replies
Hi @loribmt, Thank you so much for your extensive and thoughtful response. I also came across these fact sheets. (I feel like I have been to the end of the internet looking for my answer as to what medication I would use.) What is confusing to me is that my doctor said my diagnosis for this was Common Variable Immunodeficiency (CVID) rather than Selective Immunoglobuylin A Deficiency (SIgAD). And I think he did that because I *have* had a history of bad infections (sinus, bone, ears), that I am slowly becoming intolerant of multiple antibiotics, I have had problems with any system involving my mucus systems (gastrointestinal, sinus, eyes), I have developed many allergies over time, and then, of course, I tested low for IgA during a celiac test, which is what sparked the entire course of action here. Another indicator that this is a problem is that when I got COVID my eyes turned dark red and hurt like crazy for about three days. (There's no IgA in my tears, as that is largely what they are composed of.)
I think he is now testing for something a little more rare -- to see if I am also somehow deficient in IgG or it's subset IgG2 or IgM. He will test this by getting bloodwork (scheduled tomorrow), have me get a pneumonia vaccine, and then have bloodwork done again in 30 days to see how I reacted to the vaccine. (That last part is a bit of a mystery, to be honest -- testing for antigens or something I don't understand.) If I do have this other deficiency, then I would be a good candidate for IVIG, according to the nurse. However, the more I read about this the more it seems like I should get SCIV for it as it has fewer reactions for treatment of people who are deficient in both IgA and IgG.
Problem is, they won't tell me what exact medication that would be. Every one I check is contraindicated for use with IgA. So, maybe, immunologists prescribe something off label for this? I don't know, but I am getting nowhere fast continuing to call their office back.
I suppose what I am looking for is someone who has been treated for CVID, but is not just deficient in IgA -- that they are also low in IgG, IgG2, or IgM -- and then find out what they are being infused with.
Replies to "Hi @loribmt, Thank you so much for your extensive and thoughtful response. I also came across..."
Hi Johan. I just recently found out that I have IgA deficiency. Turns out it was first noted in bloodwork from 2018, then 2020, and then the lowest result last month of 26. My primary is trying to find an immunologist in my area for further evaluation. My IgG also low. This is so new to me, but I have been very sick with infections back to back for 3 yrs now, and recently a 6 month bout of severe diarrhea. Have 5 yr history of iron deficiency anemia, pulmonary embolism, blood clots, and EBV positive for 2+ yrs. Negative for Celiac. Negative for blood cancer, etc.
I know it’s been a few months, @johannhead, since you posted your questions but I thought I’d chime in with my IVIG and SCIG experiences.
I have Common Variable Immune Deficiency (CVID) and have been on donor immunoglobulins for 11 years. With IVIG, monthly infusions that lasted 8 hours, I experienced near debilitating fatigue for a couple of days after. Sometimes miserable headaches. Switching to weekly SCIG stopped all of those side effects.
I am not deficient in IgA, to my knowledge. But I decided to post in the hope that it might help you as you consider your therapeutic options.
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Your doctor most likely won’t be able to give you an answer about treatment until they find the specific diagnosis. Hopefully the more detailed blood tests will help pinpoint an answer for you.
What I do understand though is the idea of giving you the pneumonia vaccine and testing in 30 days to see if you have any signs of antigens to the vaccine. If there are antigens showing up to that vaccine that lets your doctor know that had an immune response. Which would be a good thing in your case.
I know you’ve been pouring over the internet looking for information, I would be too…knowledge is power. Not sure if you’ve seen this article or not but it’s pretty good with explaining the different IgG subclasses.
https://primaryimmune.org/about-primary-immunodeficiencies/specific-disease-types/igg-subclass-deficiency
Looking through Connect discussions trying to find information from other members for each of the IgG, IgG2 and IgM, I ran across this older conversation from @goddard regarding her IgG deficiency and treatment. I know you don’t have Bronciectasis but the goal is finding a treatment for IgG specific deficiency.
IVIG infusion treatments for Bronciectasis
- https://connect.mayoclinic.org/comment/270507/
Another valuable conversation for you might be this one:
Low levels of IgG IgA IgM
- https://connect.mayoclinic.org/discussion/low-levels-of-igg-iga-igm/
I know this is really frustrating and you want answers. 🙃 But speculating without a diagnosis is a time robber and anxiety producing. So hopefully you’ll get a definitive answer soon and can begin treatment to help you get your immune system up and running again.
Let me know how your blood work comes out, ok?