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sassykitten93 (@sassykitten93)

Hypogammaglobulinemia

Autoimmune Diseases | Last Active: Apr 5 2:34pm | Replies (56)

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@luckydog

Good
Morning!
I also have hypogammaglobulinemia I was diagnosed at 30 years old with it I am
Currently 52! When I was originally diagnosed they did many many blood tests and a bone marrow biopsy to rule out other conditions that can cause hypogammaglobulinemia as typically this doesn’t manifest as an adult
Unless an underlying health issue is causing it. However, as with everything else it seems though my life I am an anomaly and I do have primary hypogammaglobulinemia and it wasn’t secondary to a worse disease. I did require one year of IVIG therapy to boost my numbers up to a low stable count. they will never be “normal” but the goal is to get the numbers to a low stable count. This will help not get as many infections. I am followed by a hematologist twice yearly to be sure no intervention is needed and if it is they will
Take action. I also was diagnosed with MS six years ago which is problematic from
A treatment standpoint. Most of the MS therapy drugs lower the immune system anyways but my numbers are always too
Low it’s such a balancing act trying to find which MS drug will not tank my
immune system to much as they don’t know if I have the capacity for my immune system to reboot itself back to my low stable numbers. I don’t want to not
Treat my MS but don’t want to negatively impact my immune system and catch an opportunistic infection. So if I had not gotten sick with MS having hypogammaglobulinemia would always be a problem but for me a very manageable problem. IVIG is not a necessary treatment strictly because of a diagnosis of hypogammaglobulinemia unless your numbers are bottoming out and or you are chronically getting infection after infection. Otherwise, having this disorder requires twice yearly blood work and monitoring by a hematologist

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Replies to "Good Morning! I also have hypogammaglobulinemia I was diagnosed at 30 years old with it I..."

WHY did they just do one year of IVIG. I do SCIG which is basically the same except I infuse IgG more often for shorter period of time into my fat and I do it myself rather than going to a hospital setting/ infusion center. I asked about stopping and my doc said no.

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