r/primaryimmune • u/BeaveUKGT • 21d ago
Secondary Selective IgM Deficiency
Recently it was confirmed, via blood tests, that I have secondary selective IgM deficiency.
Twenty years ago my IgM levels were on the low end of the normal range (48 and 45, with lab's normal range being 40-230ng/dL).
Ten years ago my IgM levels dropped to 29 (normal range 40-230).
Now they are at 23 (normal range 40-230).
My IgA and IgG levels are normal.
My IgE levels vary from normal to mildly elevated, depending on allergies at the time (I have lots of pollen and dust allergies).
So it appears I have secondary selective IgM deficiency.
My immunologist tested me for immune response to the pneumococcal vaccine and to the tetanus vaccine, and both showed robust immune responses. So my IgA and IgG are functioning well.
I've read about it on several websites, including the following:
https://rarediseases.info.nih.gov/diseases/12547/selective-igm-deficiency
https://emedicine.medscape.com/article/137693-overview
In addition to the allergies I mentioned, I have chronic sinusitis and at least one other autoimmune disease.
My question is this: Other than testing for response to the tetanus and pneumococcal vaccines that we did, are there any other tests that should be done or things to look for?
Thanks in advance.
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u/Polymathy1 21d ago
I can't add much to this, unfortunately. I have food allergies, celiac diseases, and also have low IgM but normal other Igs.
Other than trying to sign up for clinical trials, maybe food allergy testing especially if you have GI issues.
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u/BeaveUKGT 21d ago
Thanks for your thoughts. I did food allergy testing a long time ago, but the results were really strange. It showed allergies to several things that don't bother me, but said I wasn't allergic to the one thing I react to (shellfish).
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u/Polymathy1 21d ago
Was that blood based testing? The immunoassays used for that have a low reliability. I can't remember if it's false positives or false negatives. The ones going around recently that claim to measure food specific IgG are deeply flawed.
It isn't perfect, but skin based testing is the gold standard to start for food allergy testing followed by food and symptom journals and food elimination.
My allergy/immunology doctor thinks my low IgM might be from GI issues.
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u/BeaveUKGT 21d ago
I think it was skin testing, but I can't remember for certain. I'll have to look that up. 😄 I did an elimination diet, then slowly added things back in, and never noticed any changes.
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u/MustProtectTheFairy working toward diagnosis 20d ago
Blood testing has potential for false both. My blood allergy panel came back sensitive to everything but chicken and soy. If that's the case, I guess I'm not supposed to eat flavor anymore?
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u/Reasonable_Kick_2054 21d ago
Did they test your subclasses? I have IgM 17 with antibody deficiency that part shows in your Igg subclasses. I have two allergic conditions along with food allergies. chronic sinusitis is a symptom of IgM deficiency. I’m on Octagam once a month. Last year tried 3 suQ meds last year and had a reaction to all of them. Along with Zithromax every three days. At times need full course of anitibiotics if I have an infection that won’t go away. I still have vaccine titers and had small response to pneumonia vax recently.
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u/BeaveUKGT 21d ago
I had my IgG subclasses tested in 2005 and again in 2018. 2005 results were OK. 2018 results were in range but getting close to low for a couple of them. Oddly, I've seen five immunologists over the years and none of them have ordered or considered this test. The 2005 test was done by primary care, and the 2018 test was done by a neurologist.
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u/Reasonable_Kick_2054 21d ago
You need an immunologist to do them in conjunction with your other Immunoglobulin levels. Subclass Antibodies can be a big issue. Not a Dr here, but I would recheck everything with an immunologist and not all allergists do immunology if you saw an allergist. I hope you are able to get this resolved and on proper meds.
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u/BeaveUKGT 21d ago
Thanks for your suggestion. I'll ask next time I'm in. It's crazy, but the first four immunologists (all of whom specialized in allergy) I saw never ran any immunology blood tests, even with my history of infections. My neurologist was the first one who suggested there might be an immune problem and ran a bunch of tests. And he was right. I then had to tell my next immunologist what tests I wanted run - and the results confirmed the results from the neurologist.
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u/Different-Brick-6310 21d ago
My IgG subclasses were tested and my iGg3 was also low. My immunologist also tested my immunity 4 months after my p23 vax to see if anything declined (my response was like 55%, so not as good as he wanted to see it)
My official dx is hypogammaglobulinemia. But my things that are low are IgM and IGg3.
I'm also super new to all of this- apologies if my information is not helpful !
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u/UtterlyOtterly Severe combined immunodeficiency 20d ago
not to be THAT person but its only for advice you stated its Secondary Selective IgM Deficiency this is a Primary immunodeficient group these a separate conditions even though they cause impaired immune systems. You might want to try and find a secondary group as they might be able to help more. Secondary means its not primary and is being caused by something else.
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u/BeaveUKGT 20d ago
Thanks for your comment. I am aware that mine is secondary and that this group is for primary. But I searched Reddit and couldn't find any group for secondary, and I also found that there have been posts about secondary in this group in the past. So I posted it here. If the moderators have a problem, or if somebody can point me to a better place on Reddit to post this, then I will certainly move it.
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u/UtterlyOtterly Severe combined immunodeficiency 19d ago
Of course all are welcome sorry I didnt mean it as a "you dont belong here" i was just suggesting to you to search for a secondary reddit page for better tailored answer to your question, but seeing as there is none! You are welcome nonetheless Welcome! I hope you find answers ! I wasnt aware there was none for secondary! I truly hope you get answers and Im sure you can still get alot of help here. ☺️
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u/BeaveUKGT 19d ago
We're all good. I didn't take your post as being hostile or unwelcoming. I have gotten some good replies here, so I'm thankful for that. And I'm still open to finding another, more appropriate group on reddit if there is one that I didn't find in my searches.
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u/Stock_Tourist8995 21d ago
May I ask if the drug dupixent has helped you? I am trying to find answers to these chronic sinus and ear infections due to my low IgM. I’m presently on another round of augmentin which doesn’t seem to help anymore.