Treatment for (low) IgA deficiency

Hi, @johanhead Welcome to Mayo Clinic Connect. I found this fact-sheet in our Mayo website regarding Selective IgA Deficiency Syndrome, its causes and possible treatments.

Here’s a paragraph from the site which addresses the possible treatment:
“ Most people with selective IgA deficiency don't need treatment unless they have frequent infections. In some cases, treatment may include a long course of antibiotics to help prevent an infection from returning.”

And here’s the link to the entire article:
https://www.mayoclinic.org/diseases-conditions/selective-iga-deficiency/symptoms-causes/syc-20362236
Another informational link on the condition from John Hopkins https://www.hopkinsmedicine.org/health/conditions-and-diseases/immunoglobulin-a-deficiency

There are several reputable medical sites which state essentially the same thing, that if you’re not having frequent repeat infections there may be no need for treatment. The treatment being antibiotics.

Were you having issues that prompted the bloodwork?

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.

Immunoglobulin A Deficiency
Does anyone know about this autoimmune disorder? Recently found and really struggling!!! Advice?!?!

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.

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.

Immunoglobulin A Deficiency
Does anyone know about this autoimmune disorder? Recently found and really struggling!!! Advice?!?!

I have been dealing with IgA deficiency for about 20 years.
My symptoms include bad sinus headaches, a lack of energy, and lessened cognition or brain fog.
I can go into what I have learned to do to treat it if you are interested and I would prefer to hear your symptoms first.
I would also like to hear what is working for others to help give some semblance of a more normal life.
Love and blessing,
Reuel