Hypogammaglobulinemia

@healthplease Hi, Andrew, I’m really sorry to hear that you have this especially with young children in the house. I included an article by the Nat’l Institutes of Health explaining all about hypogammaglobulinemia. If you scroll down the page, you will come to a section on treatment and management. You might also make a list of questions for the infectious disease doctor. Questions like ‘how to avoid infections with young children in the home’ and ‘is mask wearing important’ and what vaccines are safe and important to get.’
https://www.ncbi.nlm.nih.gov/books/NBK563134/#article-76218.s8
Is your wife supportive of your illness? She will need to be very involved in helping you avoid infections.
If you think back, was anyone else in your family having a similar problem? Who?

And don't forget that April is Immune Deficiency Month. You can check out all of their activities on their website. This is one of the finest non profits I have worked with. After all, they are paying for my trip to their conference in June Chicago. With everything I have faced during the month of March, this trip is all I have hope for, presently

I have had a low IgG (1/3 of the low range) for years although I haven't been diagnosed with hypogammaglobulinemia. For whatever reasons and I'm not unhappy about it, I have not been subject to numerous respiratory infections although I seem to get massive UTI after being scoped. My heme/onc has started me on IVIG quarterly, I'll see if this improves the situation. I have Smoldering Myeloma and Polymyalgia Rheumatica. I've been taking Prednisone for years now. So I'm not sure what is responsible for the deficiciency. I hope you get the information and treatments you need.

I have numerous autoimmune diseases and immune deficiency (IGG. IGM). This combination seems paradoxical and I think of it as flip sides of one coin, where the immune excess, the autoimmune disease, is toward your own body tissues and the immune deficiency is toward the germs in our environment. An allergy/immunology doctor usually manages the deficiency. IV infusion of immune globulins (IVIG) is the mainstay of treatment, as well as avoidance of exposure to people sick with contagious illnesses. If autoimmune symptoms exist, a rheumatologist should be consulted. The immune system is so complex it is hard to wrap your head around these problems, but the learning curve can be managed with time and persistence.

This month is Immune Deficiency Month, and I would recommend to anyone suffering from this disease, to check out the Immune Defiency Foundation website, as they have a wealth of information, and they also have many functions going on this month; and finally, you can participate in a monthly Zoom meeting wherever you live, and they are great in terms of connecting with others who share our "disease."

I have had Hypogammaglobulinemia for over 18 years. My monthly IVIG treatments have made me incredibly healthy until last year, when I had a severe prostatitis event (saved by surgery) and recently when I was diagnosed with Guillian Barre Syndrome. I have also had PMR for 4 years. The GBS is throwing me. I had 4 strong IVIG treatments, but GBS is unpredictable with pain and numbness even after treatments. Do any of the supplements on Amazon help?

@gbspgh309, I moved your question about managing hypogammaglobulinemia with IVIG and possibly supplements to this existing discussion so that you can connect easily with members like @slkanowitz @ldestella @luckydog @goddard @autumn12575 @19kcm56 @zebra2022 @healthplease

- Hypogammaglobulinemia
https://connect.mayoclinic.org/discussion/hypogammaglobulinemia/
When considering complementary treatments or supplements, be open-minded yet skeptical. Learn about the potential benefits and risks.

Keep in mind that natural substances can also have toxicities, adverse side effects and treatment interactions. Supplements are not regulated and can be marketed without rigorous clinical testing.

@gbspgh309 Welcome to Mayo Clinic Connect! Members here are very friendly and anxious to help. You have asked a very good question about supplements sold on Amazon and
@colleenyoung gave you an excellent answer!

I learned the hard way to tell the nurse that my IVIG drip does not go above 110. Above that, I had blinding migraines.
I have had to remind nurses many times over the years even though it was stipulated in my chart. It takes 4 hours but it is better than hurrying the dripmand having bad migraines.

I had to share because of your doctor saying, "that I did not look like someone who had multiple myeloma (MM)". My rheumatologist said something similar to me when I developed non Hodgkin's lymphoma (NHL) after living with Sjögren's syndrome (SS)and Autoimmune Hepatitis (AI) for eleven years. His response was that in all the years he'd practiced, non of his patients with SS developed NHL. Research says 5-10% of those with SS develop NHL...not only that, but my Dad had SS and also developed NHL I left his practice because despite the every three month blood work, nothing was mentioned once it went WAY out of wack in a variety of areas...NHL. I was alerted to a bump on my cheek and eventually a PET scan showed NHL, stage 2. Standard of practice at the time was chemo followed by maintenance Rituxan. My Rituxan treatments went on for 7 years. (Approximately 7% of those who get maintenance Rituxan develop hypogammaglobulaemia. Chronic chest, sinus, ear, and throat infections, plus pneumonia led me to seek out an immunologist. He did something called the antibody challenge...gave me a pneumonia vaccine to see if I developed antibodies...I didn't. Vaccines do not work for me. That is what you learn when you have hypogammaglobuliaemia. I don't go out much, but when I do, I wear a mask...it helps. Plus, I get IVIG infusions every three weeks...they have literally saved my life.
At about the same time I was going off Rituxan, all of my antibody levels were abnormal. The one we have been watching for ten years is the M Spike...this is the number one marker for Multiple Myeloma (MM). It has been as high as 2.7...3.0 is MM. My immune system is definitely challenged, and I keep having to up my game. I'm just recovering from pneumonia and RSV. Over the last couple of years I have noticed that I need to monitor my oxygen levels and temperature. There are reasons older people die from pneumonia...you are not aware of the changes in your oxygen or temperature, unless you test. I no longer see a rheumatologist, even though I have developed other autoimmune diseases. My main doctor is my oncologist...he is also a hematologist...I see him every three months. I trust my oncologist...and that's what we all need, someone we can trust. Unfortunately, while I was a smart student, science escaped my curiosity...and the learning curve has been quite the journey. Good luck to all of you with this immune disorder....I wouldn't wish it on my worst enemy.