Hypogammaglobulinemia

Hello-
I am so sorry that u r going thru all of this. My lungs are about shot also. Let it be known that Immune deficiencies can more times then not also cause autoimmune deficiencies...i was diagnosed with the auto before the immune def. and if I wouldn't of quit getting on to my docs this never would of been found. I am a RN n refuse to take any crap from them lol grant u, most are pretty nice. Do u have any bone issues? pain, bone loss? CVID can also cause osteoporosis...sigh xo

I’ve had lupus for 20 years. About a year ago my allergy doctor came across IG deficiencies in blood work - all of them. It was assumed that I had CVID. That info was sent back to my Rheumatologist who gave me the pneumonia booster vaccine to check for response. I did respond so they thought I didn’t need to do anything at that time. 6 months later new blood work comes back with MGUS, follow up on that was crazy high Lambda free light chains. Follow up on that with hematologist who reran the bloodwork because she thought the test might have been messed up. They came back similar. Followed that up with bone marrow biopsy and got a diagnosis of Multiple Myeloma. I was IG deficient because the Myeloma cells were crowding out the other cells. It can be a crazy ride through doctors so definitely find some you trust to work with.

Wow, I am very very sorry to hear this. I pray that they r making new strides regarding this disease also. Pls keep us posted xo

Thank You John for posting the information you found.

I’ve was diagnosed with Hypogammaglobinemia in 2010.
IVIG is truly a life saver. I would be interested in knowing mortality rates.
No one wants to give you an ETA. The cost for each treatment is absolutely phenomenal.
Thank goodness/GOD for great insurance coverage.

Any suggestions for a better quality of life would be appreciated.

In Jesus Name,

Glammie💫🌟😊

Hello Glammie @glcuming, Welcome to Connect. I'm glad the IVIG treatments are helping you. You mentioned you were diagnosed in 2010. When did you start IVIG treatments? I did find the following article that may be helpful but I'm not sure. Hopefully other members may be able to offer some suggestions.

Health-related quality of life in patients with primary immunodeficiency disease
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4587876/

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

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.

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?

Hello @janetinman and @luckydog,

It has been a while since you last posted about your immune deficiency and hypogammaglobulinemia. How are you both doing?

Have you obtained any treatments or found a specialist that you can work with?

Hi, I was diagnosed with MAC at UCLA too- in 2018. My doctors there were really good. I've left since then, bc moved. As you probably know, MAC often comes from bronchiectasis plus some underlying immune problem. I had bronchiectasis , and then they checked my immune globulins and turns out I had low IgG. I had tests on my reaction to vaccines, and have now been on weekly scig for more than 2 years the I administer myself. Easey peasey. And I hated needles before I started-- but I hated the idea of going into a strange place and having a nurse infuse me even more. . In the last year, my chest CT scans have miraculously started showing lung nodules are going away. Ive had lung nodules for 15 years. (I have 15 years of chest CTs because I had 2 malignancies and the lung nodules caused docs to follow them-- records show nodules waxing and waning, but they are really getting better-- I am convinced it is the IgG Im taking. ). BTW, My immunologist said I had CVID but when I went to another place for checkup, the new doc said she wouldn't treat the low IgG or put me on scig, apparently didnt like idea of infusing from pooled blood supply -- but I am convinced it is what is making my lungs get rid of nodules. It is the one thing that has changed in my life. The scig, and now nodules going away.