anyone with a primary immunodeficiency here?

no firm conclusions have been drawn yet, but it seems i may have SLE + sjogrens & co secondary to a primary immunodeficiency.

am being investigated by immunology now....had the pneumovax as instructed on saturday morning: so far so good: only a bit more tired, sore & achy

prepping for seeing rheumatology next week and immunology in 3 weeks, i discovered there is an organisation for primary immunodeficiency, so here is the link:

piduk.org/

they have a separate forum too:

primaryimmuno.proboards.com

maybe someone on here knows this organisation...what i've found on the website is impressive

i hope those links work....

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  • How strange - if you've got immunodeficiency, then how come the immune system gets overworked against self?? Very interesting, thank you for sharing the links, I'll definitely look into that in more detail, it's good to know.

  • apparently the co-existence is not quite as rare as some may think, and really does occur in patients like me way before any treatment with immunosuppressants....and autoimmune patients who have immunodeficiency do take daily immunosuppressants for their autoimmune conditions

    at least this is going some way to explain my lifelong predisposition to immune dysfunction on 2 levels: autoimmunity as per my infant onset lupus etc & immune deficiency as in my infant onset recurring persistent infections etc

    i agree: this is very interesting!

    haha: as i'm a libra, i figure this combo of autoimmune conditions & immunodeficiency has just the sort of balance that suits us libras

    it would be great to discover others here have been diagnosed with something like this

  • Hi there I have CVID - common variable immune deficiency . I've been on immunoglobulin infusions for the last 10 years .

  • hi there: yes, i think you replied to my question here about IVIG a few months ago....thanks so much for replying to this question too....

    how are you doing on the Immunoglobulin infusions?

    are you on immunosuppressants for SLE too?

  • I'm doing fine on the infusions tx. Keeping most of the infections & shingles away thankfully. I'm on immunosupressants for kidney transplant . Kidney failure was caused from the lupus.

  • Good news👏👏👏👏. Thanks 😊

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