Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

'No treatment' for IgA Deficiency?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by JaimeS, Jan 27, 2016.

  1. JaimeS

    JaimeS Senior Member

    Messages:
    3,192
    Likes:
    11,786
    Mid-Ohio Valley, United States
    Okay, this is weird. I had a physician tell me that if I had IgA deficiency, there was nothing he could do about it.

    Note: he did not treat IgA deficiency as 'not a big deal' -- he specifically stated that I would have more gut and respiratory infections than other people, and that those infections would be persistent... then stared at my low-ish IgG values as though he could decrease them a unit or two by the power of his will alone. ;)

    Then I went online and immediately saw that there are IgA infusions!

    Then I found several articles on pubmed chiming in that there is 'no treatment' for IgA deficiency... again, while taking it very seriously as a condition!

    The contradiction seems really odd. Is anyone informed enough on the matter to comment? Might it be that IgA infusions do exist but they are still considered 'experimental' and insurance won't pay for them? Are they not effective in the long term? (Are they not effective at all?) Do people have severe immune reactions to them?

    Thanks guys, I always appreciate what a font of knowledge PR is! :D

    -J
     
    Aurator and helen1 like this.
  2. Aurator

    Aurator Senior Member

    Messages:
    625
    Likes:
    3,077
    I have no detectable IgA. I don't know how long this has been the case, but it was diagnosed a couple of years ago, a year after I came down with ME/CFS. It was confirmed again by another blood test recently. I have been told by an immunologist that there is no treatment, that IgA cannot be given to me, and that there is a risk that I would react very badly if I ever received blood products containing others' IgA. So your point about possible severe immune reactions is valid.

    Apparently the majority of people with selective IgA deficiency are asymptomatic, but some do have an increased tendency to get URT and GI infections. Since a lot of PwME have those symptoms, including myself, it's difficult to say whether my persistent sore throat and tendency to have an upset stomach etc. are attributable to my IgA deficiency or not; no-one can tell me, or at least no-one has been able to suggest how they might find out.

    I believe IgA is present largely in our mucosa, where it performs its protective role. If my frequent sore mouth, sore throat, upset stomach and digestion have nothing to do with my IgA deficiency it does seem an odd co-incidence that all of these areas have large mucosal surfaces.
     
    Hanna and Valentijn like this.
  3. JaimeS

    JaimeS Senior Member

    Messages:
    3,192
    Likes:
    11,786
    Mid-Ohio Valley, United States
    Thanks, @Aurator ! I thought I'd read something about immune reactions, but I wondered if I were just imagining that. :)

    We're just lucky, I guess... ;)

    My IgG is borderline low. I was only half-joking about my doc actually wanting it to be lower; the range on his test for IgG4 was 4.0 - 86.0, and mine was 4.0. I think if it obliges him by dropping 0.1 units, he can say I have CVID and treat me with IgG infusion. He wants to measure it again in two weeks, and I have to think that's the reason why.

    Everything I encountered online about IgA said things like, "we do not yet fully understand..." "...the mechanism of IgA is somewhat unclear..." etc etc. Thanks so much for the info!

    -Jaime
     
  4. JaimeS

    JaimeS Senior Member

    Messages:
    3,192
    Likes:
    11,786
    Mid-Ohio Valley, United States
    Also, it turns out that a lot of people overproduce IgM to compensate, since those immunoglobulins are so structurally similar. Perhaps those with low IgA but elevated IgM are the asymptomatic ones.

    My IgM is normal, rather than elevated.

    -J
     
    Hanna and Valentijn like this.
  5. Gemini

    Gemini Senior Member

    Messages:
    638
    Likes:
    1,130
    Twenty years ago I discovered, by chance, I had IgA deficiency (no detectable IgA) after Nancy Klimas' lab ran a comprehensive ME/CFS immune system panel for my internist. It was the first immune workup I'd ever had as physicians in general in the US don't routinely run immune tests.

    To follow-up I saw a clinical immunologist who specializes in IgA deficiency, CVID & other immune diseases closer to home (due to ME/CFS.)

    Subsequently I tested positive for "IgA Autoantibodies" (some but not all IgA deficient patients have them). If one does, their medical records should contain an "Alert" because if one ever needed a blood transfusion, the Red Cross' Rare Blood Donor Program can supply blood depleted of IgA (to avoid adverse reactions).

    I don't know of any treatments for IgA deficiency. The" IDF Patient & Family Handbook" (2013) indicates replacing IgA is very difficult because unlike IgG it doesn't remain in the serum very long.

    The confusion: perhaps some IgA deficient patients who also have CVID symptoms take IVIG infusions? Some IVIG products contain very low levels of IgA & the Handbook indicates sub-Q immunoglobulin infusions are well tolerated.
     
    Last edited: Jan 28, 2016
    Valentijn and JaimeS like this.
  6. Gemini

    Gemini Senior Member

    Messages:
    638
    Likes:
    1,130
    Is your IgG also normal, do you know?

    For some IgG is elevated perhaps to compensate it has been hypothesized.

    Interestingly elevated IgG is often seen in ME/CFS.
     
  7. JaimeS

    JaimeS Senior Member

    Messages:
    3,192
    Likes:
    11,786
    Mid-Ohio Valley, United States
    I was wondering about that. I saw a stat that said that a significant percentage of people who get immunoglobulin replacement therapy are receiving it for IgA deficiency. I thought that was quite odd until I read that the serum contains some IgA, too.

    But if you had IgA antibodies, I assume that, too, could result in an allergic reaction.

    I saw that IgM is elevated to compensate. My IgM is normal.

    My IgG values are actually a little low, especially IgG1 and IgG4. I know that isn't the 'normal' pattern. As I said above, my IgG4 value was 4.0 (range is 4.0 - 86.0 for that version of the test).

    On the other hand, my IgE is through the roof. I have infections, of course -- don't we all? -- but I wonder if it could be elevated in part because the other immunoglobulins are so low. That's not something I'd directly considered at all. Thanks for the thing about IgG being elevated to compensate, @Gemini ... without that, I don't think I would have thought of it that way. :)

    -J
     
    Valentijn likes this.
  8. seunderwood

    seunderwood

    Messages:
    43
    Likes:
    83
    @JaimeS, I was just posting some more info on my L-glutamine blog, according to a 2001 study, L-glutamine will help to regulate IgA immune responce.The web site is listed at the bottom of the post.
    I'm not that familiar with IgA, but maybe it will help ,.
     
  9. JaimeS

    JaimeS Senior Member

    Messages:
    3,192
    Likes:
    11,786
    Mid-Ohio Valley, United States
  10. seunderwood

    seunderwood

    Messages:
    43
    Likes:
    83
  11. JaimeS

    JaimeS Senior Member

    Messages:
    3,192
    Likes:
    11,786
    Mid-Ohio Valley, United States
    I found a few. A handful were done in the 1980s in exercise medicine. It's definitely worth a go, but the data is pretty equivocal on the matter. Just as many studies say it's ineffective as effective.

    -J
     
    Valentijn likes this.
  12. Gemini

    Gemini Senior Member

    Messages:
    638
    Likes:
    1,130
    [QUOTE="JaimeS, post: 690892, member: 18378"But if you had IgA antibodies, I assume that, too, could result in an allergic reaction.[/QUOTE]

    Yes, exactly. IgA autoantibodies react with any IgA including exogenous sources.

    Here's a small study hypothesizing "IgA autoantibodies" lead to IgA deficiency in some individuals. A Red Cross Laboratory provided blood samples from IgA deficient patients for the study:

    www.ncbi.nlm.nih.gov/pubmed/19824874
     
    JaimeS and Valentijn like this.

See more popular forum discussions.

Share This Page