Hypogammaglobulinemia

Posted by sassykitten93 @sassykitten93, Dec 12, 2018

What is hypogammaglobulinemia? I cant tell you much because I have not found much myself on this topic except that my body has quit making antibodies I think. if any one has insight please add to this

Liked by aljinma

@sassykitten93

I really wish this wasn't as rare as it is nobody really has much info on hypogammaglobulinemia and its really frustrating to know that

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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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@johnbishop

Hello @sassykitten93, welcome to Mayo Clinic Connect. One of the tools I use to find medical research type information is Google Scholar (https://scholar.google.com/). I did a search for hypogammaglobulinemia and then selected since 2018 in the left column to see all of the articles it finds. Here's the link to the list of articles found:

https://scholar.google.com/scholar?as_vis=1&q=hypogammaglobulinemia&hl=en&as_sdt=1,24&as_ylo=2018

Mayo Clinic also has some research information I found here:
Hypogammaglobulinemia in newly diagnosed chronic lymphocytic leukemia: Natural history, clinical correlates, and outcomes
https://mayoclinic.pure.elsevier.com/en/publications/hypogammaglobulinemia-in-newly-diagnosed-chronic-lymphocytic-leuk

Have you been diagnosed with hypogammaglobulinemia (Primary immunodeficiency)?

Mayo Clinic – Primary immunodeficiency
https://www.mayoclinic.org/diseases-conditions/primary-immunodeficiency/diagnosis-treatment/drc-20376910

Hope this helps.

John

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I also have an immune deficiency currently labeled CVID but more likely Hyper IgM. Getting right tests is hard. Recommend anyone with Immune deficiency contact Immune Deficiency Foundation (IDF). Lots of excellent, free information, conventions. For second opinion in North Florida, try Dr. S. Joshi. My total IgG just dropped low enough for insurance coverage. Hoping treatment will reduce frequency and severity of infections. Have 2 types of arthritis and two types of cancer. Not giving up.

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@janetinman

I also have an immune deficiency currently labeled CVID but more likely Hyper IgM. Getting right tests is hard. Recommend anyone with Immune deficiency contact Immune Deficiency Foundation (IDF). Lots of excellent, free information, conventions. For second opinion in North Florida, try Dr. S. Joshi. My total IgG just dropped low enough for insurance coverage. Hoping treatment will reduce frequency and severity of infections. Have 2 types of arthritis and two types of cancer. Not giving up.

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Hello @janetinman — Welcome to Connect. Thank you for sharing the helpful information in your post. I thought I would provide the link to the Immune Deficiency Foundation's website – https://primaryimmune.org/ so that other members can take advantage of the information.

Do you mind sharing a little more about your treatment and let us know if it helps?

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