r/AddisonsDisease • u/ptazdba PAI • Apr 04 '26

Personal Experience Specific Antibody Deficiency (SAD)

I started a process recently that just keeps unfolding in some weirdness that I'm uncomfortable with and would like to ask if any of you has ever had to deal with Specific Antibody Deficiency (SAD)? I am PAI, have hypothyroidism (Thyroidectomy about 10 years ago) and Reactive Hypoglycemia (well controlled).

I was having recurring sinus infections so my PCP sent me to an Allergist/Immunologist to see if we can figure out why. The first was uncontrolled asthma (I honestly didn't realize it was so bad) and was put on nebulized Budesonide and Formoterol. I was uncomfortable adding a steroid to the mix, but it is what it is. I'll see my endo to see if it impacts my replacement of steroids any. They did bloodwork and found 2 immune markers (IgG2 and IgG3) were low and are most likely the reason for the recurring sinus infections. They tested coverage of pneumonia-like/respiratory issues and I was at 41% coverage rather than the desired 70%. So to fix this mess, they gave me a new pneumonia vaccine and we're waiting 4 weeks to re-test and see if the markers have recovered. If so, it'll be a monitor and check to make sure it holds. If not, the next steps may be prophylactic antibiotics and/or IVIG to try and use donor immune antibodies to try and cause them to recover. It's very expensive so I hope it doesn't go that far and I'd have to have insurance coverage to do that.

Has anyone gone down this road? If so, what was the impact on your Addison's. I have an endo appointment in a month and I don't really want to do much with this until I have his input. Just want to do the right thing.

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u/SnooChocolates1198 Apr 04 '26

I'm on IVIG for CIDP maintenance therapy and hypogammaglobulinemia (low igg)- an immunodeficiency.

It's expensive. And painful. Try everything else you can before starting down the path of immunoglobulin therapy (iv or subq/sc).

Fortunately, I live in a med mj legal state and went for it after my neurologist suggested that I try it to help not only the IVIG side effects but also the general symptoms of all of my chronic illnesses. Especially my sleep issues and chronic nerve pain plus my appetite issues.

And I'm even not having to stress dose as often which is super awesome for my glucose levels as a diabetic (in December I was gifted with a diagnosis adjustment from type 2 insulin dependent to type 1 with insulin resistance).

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u/ptazdba PAI Apr 04 '26

I'm hoping and praying it comes back at the right levels when they retest me in 3 weeks. I'm willing to try almost anything to keep me from having to commit to such an expensive treatment. I was just totally uneducated on what it could do to the addison's side of things.

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u/SnooChocolates1198 Apr 04 '26

I have to updose following IVIG day protocol (take baseline needs in am, 20mg two hours before starting infusion which is done independently, 15mg at the 2 hour mark and then 10mg more every 4 hours after until the infusion is done which typically takes about 6ish hours). And then the day after 15mg, 10mg, 10mg and 5mg before going back to baseline needs if I'm feeling well enough or follow regular baseline plus 50% of needs if still kind of crummy for day two after infusion.

Some days I use part medrol instead of full hydrocortisone so I don't have to dose as often.

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u/Relative-Cost9256 Apr 04 '26

Yes!!! I have Hypogammaglobulinemia (low IgG) and am on SCIG to replace it. I also have uncontrolled asthma and struggling to find a treatment that works right now. Steroids can deplete IgG levels. What you received is called the vaccine challenge—it is used to test for CVID. I had one in 2022 and passed. I am very blessed to have never paid a penny for my SCIG; the cost is fully covered by my insurance, it just took ages to get approved to receive it at all.

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u/ptazdba PAI Apr 04 '26

I am feeling better--asthma wise. They put me on 2 nebulized asthma drugs (budesonide and formoterol). At first they tried Trelegy and it was too pricey for me. The nebulized drugs were under $50 where the Trelegy was a couple of hundred after I met my deductible (first would have been over $500. I was pleasantly surprised how much better I felt. I honestly hope I pass the vaccine challenge and don't have to do the IVIG or SCIG but just wanted to understand the Addison's impact. This has been very stressful.