Wondering if anyone has that. I dismissed it for awhile.I go into denial ,when a new diagnosis problem from doc and then look into it. Another name for old problem, but interesting to me, like putting
pieces of a puzzle together since I was 11. A aha experience. Would love to know if anyone has had this diagnosis.
I do. I'm having it investigated further in April by a specialist.
Let Me know what they say. My doctor said that the testing for this is new, but I probably was born with it. She also asked if I have felt poorly most of my life. That is true, but many years were up and down. Always knew looking back, my stamina was much lower than others. Good luck to you . Thanks for your reply and God be with you.
Hi happytulip. I went to an immunologist. She did some testing.
Hello ht, am so relieved to know you’re being seen and fully investigated by immunology again. I am sorry hypogammaglobulinaemia has been discovered, but i’m also very glad because this diagnosis has been hard to achieve, and we’ve suspected you could have an underlying immunodeficiency simultaneous with your autoimmune conditions - due to the dreadful severe recurring persistence pattern infections you’ve been suffering alongside your severe autoimmune manifestations
For me, the 3 BIG diagnostic HURRAHS were: recovering my infant onset lupus diagnosis 7 years ago after 40 years in the diagnostic wilderness + then being told my hypermobility is the hEDS type + finally disvovering early onset hypogammaglobulineamia explained my lifetime of mysterious infections.
I hope you benefit greatly from this diagnosis, and that you’ll let us know how immunology investigations go. I hope figuring out the best hypogammaglobulinaemia treatment for you begins soon....Am wishing you every best wish. Am so glad you’re here
😘🍀😘🍀😘🍀 coco
Yes, I developed this after having Rituximab, don't know if there is any link, but Rituximab certainly did not agree with me. I now have 3 weeklly infusions of gamma globulin, to go on for the rest of my life. I do feel better for this infusion, and it has helped my chest a lot.
I have interstitial lung. I have also stopped having urine infections since having this, so for me, it does help. Hope you get some relief when your treatment is decided. Good lucl.
Hello apple. Am glad IVIG suits you and helps a lot. Are you also on daily immunosuppression meds for your lupus? If you are, which ones?
😘🍀😘🍀 coco
Hello Barnclown,
I have taken prednisolone, for 18 years now and had lots of infections, my Rheumy
wanted me to come off them, but it is the only treatment for my lupus I have as nothing else suits me. I had a very bad time in november and was told I had 3 hours to live, with
sepis, blocked bowel and double pneumonia. I did survive, and it was a surprise to be so ill after quite a long remission.
I will not risk changing any of my treatments in future, as I always get a flare if I do
and I can't risk being so ill again. My Drs are understanding about my decision,
and I will certainly stay on my Gamma globulin, as I do feel better on it.
Sorry to go on for so long,. best wishes Christine
Many thanks! I am totally relating to your reply...many thanks for every detail! You have had a truly dreadful time. I am very glad things are going relatively better for you again. the shock of illness as severe as you’ve survived is bound to make you extremely sharply focused on getting your treatment regimes right
I was scared my consultants might reduce my immunosuppression meds when my hypogammaglobulinaemia was recognised, but they all said: No Way can you stop the immunosuppression, because autoimmune inflammatory process will definitely flare if you do. Like you, I will not risk changing any of treatments that have proven to really help me.
😘🍀😘🍀😘🍀
Yes, nanno. Am VVVVV much relating to your comments...my hypogammaglobulinaemia diagnosis turning up was a HUGE lightbulb moment for me & my medics! Felt like finding THE missing piece in a big jigsaw puzzle
My hypogammaglobulinaemia features consistently below range immunoglobulins G, A & M. You probably know already, but, in case others don’t, hypogammaglobulinaemia is an immunodeficiency condition: a type of bone marrow dysfunction.
With hypogammaglobulinaemia, our bone marrow is unable to function well enough to make sufficient immunoglobulins to protect us from infections (bacterial fungal & viral). Which is especially tricky for patients like us with simultaneous autoimmune conditions, who need to be treated with daily immunosuppression meds. Saying that, Hypogammaglobulinaemia simultaneous with autoimmune conditions is not actually rare. Certain types of hypogammaglobulinaemia are especially linked with autoimmune conditions like type 1 diabetes, inflammatory bowel disease, psoriasis etc.
Some patients, like me and you, nanno, have hypogammaglobulinaemia which is not due to treatment with immunosuppression. E.g. my below range immunoglobulins were even lower than they are now during the years before my infant onset lupus diagnosis was recovered and treatment with lupus meds begun. Historic blood results have proven this, as well as my lifelong history of recurring complex persistence pattern multisystem infections. I am 64
My rheumatologist immediately referred me to immunology when my hypogammaglobulinaemua was first diagnosed. i saw an immunologist v soon, who started the usual detailed investigations into the precise character of my version of hypogammaglobulinaemia. These involved many blood tests and also “vaccine challenegs” to see whether my bone marrow could make antibodies to certain infections (in my case pneumonia & heamophilus) which mine couldn’t. So, i am a candidate for IVIG (intravenous immunoglobulin G), but first immunology has had me on long term daily antibiotics for several years now....which are helping both to protect me from infections flaring, and also are clearing up what immunology calls the persistent pockets of chronic bacteria-driven sepsis that have been affecting me for decades in my upper jaw (osteomyelitis), sinuses, stomach and urinary tract system...+ probably elsewhere
I think you live in the USA, where health care runs on a different system to oirs here in the UK. Are you being treated with IVIG or subcutaneous IG, nano? Do you take prophylactic antibiotics daily too? I hope your treatment is helping. How often are you seen by immunology & rheumatology? Sorry for asking so many questions...i’ll totally understand if you’re not feeling like going into details now
i feel extremely lucky to remain in care with both rheumatology and immunology at my UK NHS university hospital, being seen in clinic at least every 6 months
Am so glad you’be joined our wonderful forum + am so glad you posted about hypogammaglobulinaemia. Apologies for this long reply, but this subject is close to my heart
😘🍀😘🍀😘🍀 coco
Thanks Barnclown for such helpful info about hypogammaglobulansemia as I was tested for this a few years ago because of IBD. Luckily I was negative but shows how up to date my smaller local hospital is which is very reassuring!. I'm really sorry your suffering so much from the Barium swallow still!. As if you needed to worsen!. X
That IS reassuring! Your local hospital does you proud! Am so glad you’re benefitting from care there! Thanks for your kind words...those first 2 weeks after the BS were the worst...am feeling almost recovered to the level of symptoms severity before the BS, but i really didn’t need that set back. Thinking of you all today, wishing you every best wish 😘🍀😘🍀😘
Thank you for your very kind wishes Barnclown and lovely reply. You certainly didn't need this setback and I'm glad you feel your back to how you were before the Barium swallow!. That's bad enough to cope with so I hope you hear from Nina dietician soon. It's difficult with the Easter holidays in between!. Hope you get the results of bs soon and it's good news. We've made it now to the hip op, countdown is on to the recovery as mum is at the hospital. X🐣🐥😊💚
The BIG op is probably underway...thinking of you alll 🤞🍀🤞🍀🤞🍀🤞
😆 “almost recovered” to where i was before the BS...actually hard to be sure because my abdo/visceral hyperreactivity just gets worse as the months pass...this is why i need to see specialist gastro dietitcian nina to start trials of liquid nutrition drinks and find one i don’t react badly too...better find it sooner rather than later 🤷🏼♀️😘✌️
Hi barn clown
OP isn't until the evening sometime. Don't know when. We're both like cats on hot tin roofs!. So sorry about your abdo/visceral problems!. You must be so tired of it and concerned. Hope you get an appt with Nina soon. You need to know what would be suitable to try otherwise I wondered about Complan that you can buy in boots?. It has all the vitamins you need in it !.
Would you know I've sorted my chest out nicely and now having colitis flare with pain. Will stay on 8 mg steroids a bit longer and have increased colitis drug dose as per instructions!. It doesn't stop for us does it?. Shame too about the cold weather for Easter. Take careX
Hope you’re all OK...🍀😘🍀😘🍀
Hi dear Barnclown
We've just phoned the hospital and mum's come thru op really well thanks for asking. Tomorrow they're getting her walking for first time. The 6 week recovery starts here!. So relieved, she's a clever lass!. We're going to see her tomorrow. You take care and sleep tight and thanks so much for all your support!. X
Thank you so much for your reply. I really appreciate how much you know about your illness. It has been a long haul for me not just the complexity of all this, but the having to deal with reactions and no one really getting it, especially my Mom, who is in better health than me at 90, and yes to be dismissed by male docs , not all. I look for women docs. these days. Right now have so much gratitude for this forum. I was sick off and on from 11 or12 with joint problems and blood problems and skin. Raynauds, Gastro.,sjograns, thrombocytoplenicpurpura, severe fatique., etc... Really was not taken to the doctor in those days as much as needed. I knew I was different, because, when in my 20s, I could work all day and be exhausted, not able to go do anymore, but others could go again in the evening. The same as young teen. Still dealing with that sometimes. I have a big family party to go to for Easter and do not feel up to it, but will force myself and leave first. Thank God for my husband too. He is very supportive, but also has some health problems.He is 11 years older and does a lot for me, but not baby me. Every time I have gone to see a new doc. and do the routine test for blood, I have felt like they were missing some test that I should have. I am so glad and hopeful that the hypogammaglobulinaemia diagnosis will help you. I go to the immunologist every 3 to 6 months now and rheumatologist every 6 months, sometimes sooner. Have had pneumonia 2x, sepsis, meningitis 2x . The Vaccine for pneumonia does not work on me either. I have taken many antibiotics off and on when really needed, but try not to because I get thrush and have to take something for that. The IG treatment is IV at a medical facility and 4 hours long. I prefer it to being home and subcutaneous.Have had it since September and they give me an antihistamine and tylenol before time. It is worth taking, as I get very bad headache if I do not take it. So far so good. No problems with it. My doctor is going to increase the strength though because I told her I do not feel any different and my labs have not changed that much. She started with lowest dose . I have been also very happy with all the doctors I have had the last few years. Most are very caring and am so grateful for that. I am 68 and live in a rural town called Forest Hill, Maryland in USA. We love where we are. We have 5 children, 3 of which are from me, though 8 years apart in age because of lupus flair after each birth. The youngest was born when I was 39 and he developed Hashimotos thyroid at age 4. H e has been on levothyroxine ever since and so have I. Did not work, when children were young, because could not handle both jobs with lupus. Did have antique business when they were older and they helped me. That was more fun than money. So nice to chat with you. Take care of yourself and God Bless You. Nan P.S. I am not nearly as computer savvy as you. This forum motivated me to finally get e-mail address Please forgive the penmanship
Dear Nan: many thanks for your beautiful reply, including answers to all my questions. Many thanks! I grew up sort of around the corner from you, in the country outside philadelphia. Reading your reply, i almost felt as if i could hear your lovely accent! It’s easter weekend now, and you’ll probably be trying to rest up so you can manage the party without too bad an aftermath
am vvvvv much relating to your descriptions of having to ration the way you’ve expended energy all your life! Means making hard choices, often...in my case resting up & earning had to come first, so social life & hobbies were almost non existent...we’d hoped for children, but now i feel my infertility was better for my health. I do feel a bit whistful about missing out on this big experience, though. But i managed to have a career i loved, involving creativity (photography, writing, public speaking etc), thanks to a v supportive employer. And my husband is my hero
You have been through a lifetime of big serious health ordeals + the inevitable day to day trouble that comes with AID. I love your attitude towards everything involved in this: i am so glad you’ve got along well with your medics, and still do: this is such a big positive! As is your husband: a really good guy!
It’s 3 years now since my hypogammaglobulinaemia was fully acknowledged...the past 3 years have involved immunology + my other clinics getting to know + my version immunoglobulins deficiency and how it’s relevant to most every one of my body systems. Meanwhile immunology is watching to see whether infections breakthrough their ongoing daily antibiotics treatment (coamoxiclav 625mg, 2x daily) so far this is damping down my chronic pockets of sepsis and i have had no new breakthrough infections. And my ENT + urology + gastroenterology + oral surgery + maxillofacial clinics are all now wide awake to causality behind the chronic persistence pattern infections they’d found so baffling. So, you are right: the hypogammaglobulinaemia diagnosis really is helping both me and all my consultants. And meeting you now, plus joining in the winderful discussion you began when you posted, is helping me greatly too
I’m so glad you’re here. 😘🍀😘🍀😘🍀
Let me join in the ‘ me too ‘ group as this was the first serious diagnosis I was ever given. Eventually it was followed by CVID, another Primary Immune Disorder, and numerous auto immune conditions by the dozens. Basically, the demise of an already compromised immune system. It is a congenital disorder and not something that you could give to anyone by being in their presence or even, marrying them ! It is something that cannot be ‘ fixed ‘ by eating better, taking more vitamins or working with enthusiastic physical therapist who may like to think that they can ‘fix’ you if you will just do what they tell you to do. ( of course this has happened to me in case you were wondering). They all mean well and do believe they can help because they have seen dramatic changes in patients before. Unfortunately, until someone comes up with a cure, no amount of physical therapy and positive attention can change our genetics.
I will say that if you have been recently diagnosed with hypogamaglobulinemia you should probably focus your attention on that ASAP and suck up all of the most current information you can find and then have a good sit down with your immunologist or whichever specialist diagnosed you and find out what might be the best plan for keeping your disease under control.
It’s a mighty big word, but not a terrible one. The biggest problem is that so few people understand what it is.
Hi fezzywig: Great reply!
Aplogies for jumping in, but your reply is v meaningful to me: I totally agree with every word! I need to understand my diagnoses in order to cope with everything they let me in for...and recently i finally am beginning to feel i’m getting a grip on my version of hypogammaglobulinaemia - after several years of hoovering up info from good sources like PID UK, + also from friends with PID (Primary Immunodeficiency) ) & CVID (Common Variable Immunodeficiency) + even from my consultants here in the UK (at every one of the various multisystem clinics i attend: lucky for me, they all do understand the implications of CVID and take these into account in their treatment of my case))
so i was prepared & delighted when the consultant at my last immunology clinic confirmed that my version of hypogammaglobulinaemia does go under the PID CVID headings (for others: PID UK says CVID is “predominantly an antibody deficiency”). The concensus is that my familial genetic predispositions + my 5 months of daily inutero exposure to the notorious endocrine disrupting artificial oestrogen DES (diethylstilboesterol) set me up for both infant onset PID & SLE (and DES also caused my infertility + other bad gyn manifestations)
I think you’re in the USA fezzywig? and under endocrinology for the CVID?
😘🍀😘🍀😘🍀 coco
PS in case anyone is interested, here is the link to the PID UK website...I think it gives clear concise understandable info & advice...covering at least 5 types of immunodeficiency disease including CVID, secondary immunodeficiencies, and complement deficiencies etc:
‘Hey, thanks Barny, or is it CoCo? Having company is almost always a nice thing, however in our circumstances it might be considered sadistic to enjoy it too much. I currently see 6 or 7 doctors, each handling the specifics of the most important auto immune diseases that keep accumulating with time. My immunologist handles my infusion therapy and the extensive blood work that I have done every 4 to 5 months. Those test results are usually about 30 pages worth of information a good part of which I cannot follow without his guidance or a 25# medical guide. Once a year he goes even further with the blood testing looking at all the genetic information. Frankly I don’t pay much attention to the details anymore because there is very little, if any new information. He is the head immunologist at a very prestigious facility here in Texas, my home state, so he leaves no stone unturned. The bummer is however, that he will not treat me for anything himself.. other than handling my infusion therapy. If he notices anything askew in my blood work he will advise me to see a particular specialist for evaluation and treatment. Even if I needed something immediately I’m pretty sure he would still send me off to someone else. It drives me crazy. I do love the guy and appreciate his brain power, but he still annoys me when it comes to this. I abhor traipsing around to doctors unless it is vital. I was not properly diagnosed until I was in my late 40’s and spent many years wasting precious time and resources with doctors that had absolutely no inkling of what might be wrong with me. It was utterly demoralizing. I am now 70. So I have only ‘enjoyed’ the benefits of a proper diagnosis for only 2 out 7 decades of my lifetime. Only someone with a PID like yourself could begin to understand the impact that has on one’s life. Generally speaking, my trust in doctors and faith in the medical community were destroyed along the way. It wasn’t until I diagnosed myself and went begging to doctor after doctor to run the appropriate tests, that I was finally given the help that I actually needed.
So sorry for the ramble here. I guess I needed to get this monkey off my back. I really appreciate finding your marvelous group here across the pond. There is nothing better than being able to exchange thoughts and experiences with people who have faced many of the same challenges.
Please: no aplogies! You’re story is fascinating. It’s great to meet you. Many thanks for explaining. Am totally relating to EVERYTHING you’re telling us!
And, me too: full diagnosis too decades to achieve, even here on the NHS (and even though i actually had been diagnosed with lupus as a toddler...long story: my parents & dictors kept this secret - i was led to believe i was just “more suckly” than other children...so when i moved to the UK at 21, the NHS took me over unaware of the lupus). It’s 7 years since the NHS finally figured out my SLE, and the PID investigations started not long after that. Meanwhile i’ve been regularly attending a bushel-full of different hospital clincs...as you’ve said: by our age, this is pretty much inevitable when we have overlapping early onset immune dysfunction & connective tissue disorders
Plus, THANK YOU: you’re the first person to try to figure out my forum name! Well, i grew up in the country outside philadelphia, where we had lots of big red timberframe barns full of barncats called Barny...and now i live in an english timber-frame barn in the uk countryside, just like those Barnys (or is it Barnies)...but my nickname has always been Coco...so, i’m Barnclown!
Now, i LOVE your forum name Fezzywig: please give us the story behind Fezzywig?
Sorry I am so long in responding. I enjoyed hearing a little of your background and certainly appreciate your willingness to openly share. BTW, my forum name isn’t much of a mystery I’m afraid, I borrowed it from a quite cheerful, older couple out of the famous “A Christmas Carol”. I always loved the name and found Mr. Fezzywig to be a very endearing character, so, I thought I might just borrow it. And so it goes.
I also get IVIG and am wondering what kind you get. I am Nan from USA in Maryland. Have been getting it for 7 months now and labs do not show improvement and lately have. I am getting gammaguard and sit for 4-5 hours once a month. It has not given me any extreme side affects, but I do not feel better. Hoping you feel better and keep posting. I am 68 and answers to my health have come slowly, since childhood. God Bless You.
Hello Nan from Maryland. Many moons ago I attended college on the east coast and always wanted to return to at least visit again to enjoy your beautiful autumns. I now divide my time between Austin, Texas and Michigan.
So, we are about the same age and have probably experienced some of the same frustrations growing up in a world that knew little to nothing about Primary Immune Disease, auto immune disorders, or much of anything relating to such serious conditions. I did start out on IVIG after I was finally properly diagnosed some 14 years ago. My very first infusion put me into the hospital with meningitis. I believe it may have been Gammaguard. It simply shows us how different we all are. After recovering my Dr. switched me to Privigen which I tolerated very well for over 5 years. My numbers did improve and reach normal ranges, but I still struggled with all sorts of problems and finally had to retire too early. Then I switched over to SubQ, Hizentra. Wow, what a difference. Within a couple of months my numbers launched into the highest levels possible without being problematic. My overall health became better than I thought would ever be possible for me again. Needless to say, I would advocate the SubQ route for you if your IVIG does not get your numbers up and you feeling a change within a year. (remember, a year from when you 1st started). You do need to give it a fair chance to work. Changes do not occur overnight although we all are hoping that will be the case. The other thing I must share as well, is that as great as my numbers have been, and the reduction in my hospitalizations and illnesses, things are still far from perfect. I do believe that some of that is age related, I’m 70, and some of it is simply that gamma globulin treatment, as helpful as it is, does not cure anything or resolve much. It is only as good as how long it circulates in your blood and assists in fighting off some of the ‘invaders’.
I don’t want to ramble on here with a big speech for you, but I can tell you what I wish someone had told me a long time ago.. your infusions should eventually help you, although it might take some time and experimentation. You will still be left with your Primary Immune Disease for which there are many health problems that may arise or continue to follow you.
Best wishes to you going forward. Don’t hesitate to call on the folks here, they are a wealth of knowledge and especially kindhearted.
Thank you Fezzywig. Really appreciate the information. The background knowledge of your experience with IVIG is very helpful. I look forward to each treatment thinking this time maybe it will improve. Last lab results were worse. Doctor increased it. As a result, I remain hopeful. In the past have had meningitis 2x. Hope not again. Apparently aseptic meningitis is a side affect to Gammaguard. Hoping to transfer this information soon to doctors and see what they think is best for me to do now. Just want to feel strong enough to get off of the sofa more than I do. Thanks again for taking the time to write to me.The kindness people show here and authenticity is refreshing. I am most grateful. God Bless. Nan
Brilliant testimonial & advice, fezzywig: you’ve summed up all this better than anyone i’ve encountered during several years of getting my head around this.
PS aside from the business of figuring out which product suited you during IVIG, did you find managing with the world of subcut itself relatively “easy”? Am feeling put off by the sterile conditiins, storage inc fridge etc ...and by the usually temporary reactions: swellings, rashes etc. On my UK PID forum they are all v pro subcut and tell me the swellings go down & the rashes are treatable, but hardly any of them are also managing infant onset autoimmune disease + early onset PID + also Hypermobile Ehlers Danlos Syndrome with suspected Mast Cell Disorder....
Can anyone tell me what the specific blood tests are for this? I’ve never heard of hypogammaglobulinaemia before and would like to investigate further with my GP and/or rheumy.
i’ll offer you up my experience, milkwoman:
My impression is that the basic blood tests are relatively straight forward: immunoglobulin G,A,M levels are checked.
but in the UK, it would be unusual for a GP to undertake immunoglobulin blood tests. Usually your history of of recurring persistent pattern respiratory infections, especially infections so severe they required IV antibiotics, would result in referral to immunology where immunoglobulin levels would be tested
In my case, without my knowing, various consultants had tested my immunoglobulin levels over the years and not reported that the results were below range (my constantly below range lymphocytes had also been ignored). Meanwhile i was having recurring multisystem persistent pattern infections and resistance to antibiotics, being hospotalised with sepsis etc etc. Whatever, finally it was the brilliant rheumatologist (who had recovered my infant onset lupus diagnosis a few years before) who referred me to immunology for investigations into bone marrow dysfunction-related lymphopenia & hypogammaglobulineamia after blood tests prior to IV bisphosphonate osteoporosis treatment again revealed below range lymphocytes & immunoglobulins as usual...i feel very lucky this consultant is more proactive & responsible than all the others who ignore my deficiencies over the years...i do wonder how many other patients are neglected this way
Hope something in there is useful
😘🍀😘🍀 coco
Hi barnclown -
You are so sweet! 💕💕💕
After I posted my question, I did some research and was able to find the “quatitative immunoglobulin” lab test and read up on it. (I’m in the US).
I have my annual physical coming up so I simply added that test request onto the other labs my GP usually orders for my annual physical, with a brief explanation of why I thought the new test may be important (recurrent infections, episodes of chronic diarrhea, low lymphocytes, etc.).
I just heard back and the labs have been ordered. My GP is the best! ❤️ I am so fortunate to have him.
~Hugs~
YAAAAAAAY!
Like Fezzywig, the consultants investigating & monitoring my hypogammaglobulinaemia (mine & others i know in the UK tend to see immunologists, in the USA endocrinologists get involved) take lots of blood and produce pages & pages of bloods results, especially during the first year when we were doing vaccine challenges etc.
You’ve probably found this USA PID org already, but i’ll include it for others reading this discussion. A DES Daughter i know in Boston, USA who also has PID + various AIDs says the Immune Deficiency Foundation is a credible and excellent resource:
Hope you’ll let us know how this goes!
😘🍀😘🍀😘🍀
Can anybody relate to this?
Gabapentin? Hmmmm.....
Short term memory loss
Dry sensitive eyes and makeup 
Upper chest pain when breathing while lying down.
