Treatment for (low) IgA deficiency

Posted by johanhead @johanhead, Oct 12, 2022

I am posting this here because I do not see an "Immunology" topic. If I should have posted this elsewhere, I apologize.)

I just learned that I have no measurable IgA. My doctor (not a Mayo doc) has ordered more tests for me, but is being cagey about what medications I would take for this and I don't understand why. Seems like it would be IVIg or SCIg meds, but I cannot find one that isn't contra-indicated against using for low IgA. (It seems they cause clots???) Does anyone else have this problem and what treatment is available? I need to know for selecting a health plan with a complimentary formulary next year.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Also, I have found that ozone IVs are tremendous and amazing…

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@greylady1992

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

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This was just flagged low on my bloodwork. Was on rituxin but off for a year and still low. Been at this for awhile. Can anyone explain please. Current dx. Sle Sjogrens fibro small fiber nueropathy. POTS

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@butterfly9

This was just flagged low on my bloodwork. Was on rituxin but off for a year and still low. Been at this for awhile. Can anyone explain please. Current dx. Sle Sjogrens fibro small fiber nueropathy. POTS

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Currently experiencing a lot of respiratory issues

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CVID and hyper- inflated lungs::: are they connected?
Hypogammaglobulinia also been diagnosed.

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My son has primary immune deficiencies of selective iga deficiency and hypogammaglobulinemia that he receives ivig infusions regularly.

I want to know if there has been any way to cure or fix the iga deficiency. Most docs say no cure etc but I’m am not satisfied and want to learn more options or alternative ways.

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@happyccl8

My son has primary immune deficiencies of selective iga deficiency and hypogammaglobulinemia that he receives ivig infusions regularly.

I want to know if there has been any way to cure or fix the iga deficiency. Most docs say no cure etc but I’m am not satisfied and want to learn more options or alternative ways.

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Hello @happyccl8. I combined your discussion with an existing discussion titled, "Medications for Low IgA" - https://connect.mayoclinic.org/discussion/medications-for-low-iga/.

Members @levidog, @johanhead, and @elias93 posted about their treatments or diagnosis of Low IgA and may have some insight to share with you and your son.

@happyccl8, how is your son doing with the treatments he is currently receiving?

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@JustinMcClanahan

Hello @happyccl8. I combined your discussion with an existing discussion titled, "Medications for Low IgA" - https://connect.mayoclinic.org/discussion/medications-for-low-iga/.

Members @levidog, @johanhead, and @elias93 posted about their treatments or diagnosis of Low IgA and may have some insight to share with you and your son.

@happyccl8, how is your son doing with the treatments he is currently receiving?

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Ivig has helped with Igm and igg levels. It has done nothing for his zero iga levels.

The only reactions he has to ivig is rash, and aseptic meningitis. That’s it. Takes about a week to recover.

However he did get pneumonia causing virus recently that caused him to be ill over 14 days and that’s concerning since rarely gets sick except for occasional high fevers of 104.5 and leading to major seizure and altered mental status about a week after. Some kind of post viral encephalopathy. That’s his first protracted illness and ucsf was calling us daily over the weekend and after checking on him. No meds can be given. Just watch and monitor.

They are saying his Encephalopathy and seizures are immune related since he has responded to Iv steroids and Ivig.

My main concern is raising his iga levels to decrease illnesses and inflammation to keep his encephalopathy in remission and decrease seizures.

Now I was reading somewhere that Iga, Igm and igg are made in the digestive system. So my guess I need to do something with his micro flora . I have to agree because at his worse— his stomach was severely bloated and major gas, diarrhea and constipation and he was diagnosed with SIBO and the docs wanted him on some $20,000 antibiotics. So instead of giving him that I chose to go to a functional medicine doctor to use herbs and gentler antibiotics first before using the big guns, that seemed to work well, and all digestive issues are gone now . Functional medicine doc recently dropped us due to covid laws lifting and previously we were seeing the group remotely as they were out of state. California has some strict rules about seeing doctors remotely out of state.

But iga still remains low.

He takes beta glucans and Sbi protect which is bovine based igg . And read that colostrum can help with further gut repair in the hopes of increasing iga immunoglobulins. I am doing all the research I can and reading everything I can to improve his quality of life.

I want my son to be able to go to group environments with other kids without getting so sick like he was recently. He is homeschooled currently to keep him healthy and seizure free.

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My son has had gammaguard - no problems with clotting . He had both selective iga deficiency and hypogammaglobulinemia and encephalopathy seizures. He rarely gets sick but in addition to ivig he was getting tons of supplements. We stopped supplements for 3-4 months and he got so so so sick. So sadly back on the supplements. Nothing has changed the no iga blood levels but basing if my son is sick or not and how he is feeling. So supplements plus the ivig seems to keep things at bay, now trying to determine which of the 20 something supplements he takes is doing the trick.

Ivig has been helpful for everything but the low iga even if there are possible trace amounts of iga in the ivig infusions

Curious if anyone had elevated liver enzymes with digestive issues with low no iga, low igg , Igm ?

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@reuel

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

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Interested

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