Mayo Clinic Connect
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
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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:
Mayo Clinic also has some research information I found here:
Hypogammaglobulinemia in newly diagnosed chronic lymphocytic leukemia: Natural history, clinical correlates, and outcomes
Have you been diagnosed with hypogammaglobulinemia (Primary immunodeficiency)?
Mayo Clinic – Primary immunodeficiency
Hope this helps.
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@johnbishop thank you so very much this is a great start
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Glad to help! It helped me learn something new also.
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My doctor just gave up after only trying 1 type of immunoglobunlin infusion 3 treatments in total he said the painful side affects are to much but shouldn't I be the one to decide this? And he just gave up what does that tell a patient hes lucky I'm such a fighter
@sassykitten93, is it possible to get a second opinion from another doctor? A patient certainly has a part in the decision making process for their own health. I think we need to be proactive and work with the doctors but the communication has to be a two way street.
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@johnbishop Being referred to immunology as we speak I'm not letting them drop the ball on this no way on earth will I give up till we know there are no more options out there I have only found 2 types of treatments for hypogammaglobulinemia infusion and bone marrow transplant and I'm not sure I'm so advanced that I need a transplant but beings my dr wouldn't talk to me I'm really not sure how advanced my condition is
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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
I’m tagging @dougmann and @miche as they’ve written about hypogammaglobulinemia in other discussions on Connect. Since CVID or common variable immunodeficiency could be a probable cause, I’m also tagging @ldestella @xfirerose @cbdonlon; I hope they will join in and have some more information for you. Have you already been seen by immunology? I’d really like to hear back from you.
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Hi! DO NOT LET THOSE DOCS DICTATE WHAT UR LIFE SHOULD BE!! It took me 5 yrs to figure out what was wrong with me. I pushed until i got a referral for a IMMUNOLOGIST. The immuno doc will give u a shot of pneumonia vaccine or tetnus….if u have never had a pneumo shot. This tests ur antibodies to see how they react…ur immune system has a memory. If ur body doesn't fight well against the vaccine and they do blood work called IgG panel and that is bad (i have absolutely no IgM, IgA, and very little IgG) good chance u have CVID with predominant B cell damage as myself. I have gotten the IVIG infusions for 2 yrs…but also on 37 antibiotics in two yrs.
This is a real crappy disease…I am heading to hospital in 45 min for my 6 hr infusion.. I do not handle the infusions well…my body reacts to everything anymore. Oh, make sure that ur docs test u for CMV…cytomegally virus, and epstein Barr virus as those have invaded my body also due to no immune system. Pls wear a mask during the flu season n stay home as much as possible…i will check in after my infusion if im not to sick xo
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@kananab thank you for replying. I am currently being assessed at UCLA for a MAC infection of the lungs. They are also going to start treating me for my CVID. They think I may have more things going on in my lungs besides the MAC. I also have Bronchiectasis. They want to change me from IVIG to SCIG. We are having problems with that because there is a blood shortage. I am waiting for tests. I am having a hard time producing a sputum sample. Finally somewhere to find out more about CVID.
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.
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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,
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
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