Hypogammaglobulinemia

Thank You Callalloo for the advice and the link to the article. Much appreciated, karen

Hi Karen, how did it go at the immunologist? And as for the osteoporosis, have they started u on any bio phosphates or injectable’s? I hope that u r on gamma globulins and r feeling better!
Lisa

What a great article! I too have been diagnosed with hypogammaglobulinemia along with mt dilated bile and pancreatic ducts. Tomorrow I have an appointment with a rheumatologist who I hope will know what she is doing and/or how to treat me. My PCP is also consulting with a hematologist regarding some of my recent lab work. I am still seeing the hepatologist in March, and look forward to getting some straight answers to this awful condition I have lived with now what will be 3 years in April 2023.
I did receive some good news that my CT Scan this past Friday showed no changes in my ducts since the MCRP I had last summer. I realize that I "should" feel very happy about this news, yet as I was working on my art project this evening I could not help but to think how much I have changed over the past 3 years, how I look, how I feel most of the time and things of that nature. Today I went shopping to find some new sweat pants and wound up in the boys department where I did find a pair, and while they are a bit "roomie" I can wear them over leggings to stay warm. I am also getting a lot of support from my pharmacist who is always encouraging me to eat, although having no appetite most of the time makes it difficult to eat. However, I did stop in at Trader Joes and purchased everything I needed to make some chicken vegetable soup to go with some bread I have been making myself. While I did lose about 5 pounds over the past two weeks, I am determined to get that weight back.
I find I am more tired than usual, and understand that this too is a part of my disease. I tend to push myself to the limit at times in an effort to believe and feel I am more "normal" than one who has a chronic illness.
While I still greet each day with gratitude, admittedly I am feeling a bit dismal about my current situation. I am sure many feel this way and I applaud everyone who keeps putting one foot in front of the other as we all navigate what can be a skewed medical system.

I've found another great article on elevated serum levels and their relationship to liver disease:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3071169/#:~:text=Hypergammaglobulinemia%20is%20frequently%20observed%20in,for%20autoimmune%20hepatitis%20(AIH).

My doctor has consulted with a hematologist and we will run more labs in 6 months. In the meantime, I am waiting patiently for March 7, 2023 to arrive as that is when I will finally see the hepatologist. While the CT scan showed no changes in my bile ducts since the MCRP last summer, I am experiencing more symptoms, or rather, my symptoms have worsened. However, I am still doing the best I can to remain active, creative and hopeful. I would like to be able to put some weight on, but this has proved difficult because of both appetite issues and the fact that many foods "go right through me." I eat what I can when I can. Sometimes I eat the wrong thing and pay for it later. A food journal has been helpful.
One of the most difficult things for me to accept is that I am more tired than usual. I am used to always being on the move, yet now I feel as though it takes more effort to accomplish those tasks I set out to perform. In any event, I am grateful for this patient portal and also for the people in my life who have been and are supportive. Without gratitude, what would be left? I tried explaining this to someone recently, but they just didn't get it.

I was recently diagnosed with hypogammaglobulinemia back in December. Not only do I have that but I also have Sjogrens, Leukocytoclastic Vasculitis, R.A. and Cryoglobulinemia. Alot. And now Hypogammaglobulinemia. Majority of my issues have been all the joint pains (and finding meds that I don't react to), chronic fatigue, and dry mouth. I can't say I've had many infections or been sick. Everyone around me have been sick but I haven't, which has been really weird on my end. I've only had the joint pains and flares from my autoimmune disorders. And most all of my labs come back normal.

It has been confirmed after many tests that I do have this disorder, and have been informed that if I get a bad infection I will need immune therapy. I understand the gist of this diagnosis, and have read some academic articles about this disorder. I am curious whether or not this is tied into my bile duct issue, for which I will see the hepatologist later today. Of course I will ask her. My question is whether or not anyone with this diagnosis has had to make any lifestyle changes as a result of the disease.
Thank you

Hi Frances, sorry to hear about your new diagnosis. I moved your post to this existing discussion group so you can connect with other members like more easily:
- Hypogammaglobulinemia
https://connect.mayoclinic.org/discussion/hypogammaglobulinemia/

What lifestyle changes have you had to make?

in reply to @zebra2022 I too have Sjogrens and it is just awful. Lab tests did come out normal, however my former rheumatologist has told me that the test results are not always accurate. For the dry mouth I do use those special lozenges, but there is an ingredient in them that upsets my stomach. Go figure. I have not had any infections either, but like you, the joint pain and also muscle pain that I have can be very bothersome. Best of luck

Hi all,

My name is Andrew. I’m two years into getting hypogammaglobulinemia and boy is it a struggle. Tough to find joy sometimes. I’m 36 with a little boy and another on the way. I currently have a fever and will get antibiotics tomorrow from my infectious disease doctor. What are some best practices around managing this?

I’m not familiar with this.
What exactly are your symptoms and did it just show up on bloodwork?