Hello all. This is my first post here. Am so glad to find your forum. You've helped me a lot already and I've only been here for a week or 2: THANKS SO MUCH 👏👏👏👏
I've been managing bronchiectasis symptoms for decades, alongside an increasing collection of diagnosed & debilitating multisystem conditions. 5 years ago, in my late 50s, things came to a head. Soon a top NHS lupus & Vasculitis clinic at a famous teaching hospital took me on and began to treat me for systemic lupus and sjogrens. Then we discovered I'd been diagnosed with lupus as an infant & teen. Anyway, I'm responding well to daily systemic treatment with a cocktail of immunosuppressives.
Early this year, my lupus clinic referred me to immunology at the same hospital due to what we now know is my early onset hypogammaglobulinaemia & lymphopenia - both of which I was living with for many years prior to lupus etc treatment with immunosuppressives began 5 years ago.
So the NHS & I have been managing all these years with my dodgy contradictory combination of immune dysfunctions: my immune system in overdrive due to the lupus etc, and my immune system damped down due to specific antibody deficiency/CVID
Immunology has me packing a home emergency kit of coamoxiclav 625 (2 weeks worth). You've helped me understand how to collect lab samples prior to starting antibiotics 👍👍👍👍
Now I just need to know: how do you say it...should it sound like :
Bronkey Extasis
And also I just want to say: it's a big relief to find you guys are here! (Thanks to babs, who sent me here❗️)
🍀🌻 coco
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As far as I know, yes. But how on earth you get your tongue round all the other things you've got is amazing. I can manage Lupus and that's it. Nasty condition. Farmer's wife over the road is a very keen campaigner for Lupus Society.
Look after yourself and let us know how things go.
I guess maybe I get along more or less ok with the medical lingo due to a career in horticulture speaking botanical Latin every day: all those Latin plant names...yikes😤.
Glad to know of your lupus uk campaigner: it's a great group of people...the HU forum has made all the diff to me over the past 5 years
Hi again Coco! Yes, I think you have got the pronunciation fairly right just don't put in an 'X' make it a 'K' sound instead!! I am well practised now in saying it as it should be so that people don't think I'm saying that other condition BRONCHITIS! So, here goes: 'bronkay-EKtasis' . That's close enough.
Hope you don't mind if I budge in: we love Yorkshire❤️, but hadn't spent time in Northumbria until October past when we caught a week of perfect weather for walking along the Wall & in the Cheviots..,we totally have fallen for Northumbria!🤗👍👌
They thought I did too Pidgeon pie, from several sputum tests. A blood test, skin prick allergy test & CT scan proved I don't have it. Very luckily for me.
You must insist on getting a definitive diagnosis ASAP. Good luck
Hi Barnclown just wanted to say welcome, but hope you can answer a question, I've just been diagnosed with hypogammaglobulinemia (that's a mouthful too lol) and was wondering what treatment you had for it? Xx
Hello Sheila & thanks. It is a mouthful! Apparently there are various types of hypogammaglobulinaemia, and treatment depends on the type. Although my version is of longstanding, immunology is concentrating on my blood results as of Dec 2014. Immunology only began investigations in spring of this year (I had to wait 3 months after initial referral. Meanwhile I concentrated on antibiotics as treatment).
At this point, immunology tells me we have a long way to go yet, before they can give more than provisional diagnosis, but my deficiency is broadly G, A & M. With specific T & B cell deficiencies being profiled. Meanwhile, diagnostic immunisations continue: they're most concerned I have zero antibodies to pneumonia and failed to produce any at all in response to pneumovax 23. Next we see what I may create after prevnar 13. Meanwhile, as I said in my question, I'm keeping emergency long term high dose antibiotics at home along with lab sampling kits - the aim is to ID the specific pulmonary & ENT & urological infection agents involved. I also am on prophylactic antibiotics for my recurring complex persistent UTIs + pyelonephritis
My impression is that I have what they call a Specific Antibody Deficiency. As with lupus, I understand full diagnosis, with precise profiling of the types of antibodies involved, will take some time. While investigations continue, I think they'll keep me to treatment with antibiotics - as long as my infections continue to respond positively. But if my Ig &/or WBC results drop even lower or my infections go wild, I think CVID and immunoglobulin G infusions would be on the cards
What point are you at in profiling your hypogammaglobulinaemia?
It's really for those with immunodeficiency as a primary condition, but they've been helpful to me even though immunology hasn't determined whether my immunodeficiency is a primary or a secondary.
Thank you so much for reply Barnclown, very helpful indeed. They are talking of sending me to Papworth, with a view of treating it with g infusions but I won't know anything def. til the 3rd Dec. I will let you know what point I'm at then. Until then ABs and steroids. Sorry for hijacking your post, you came here for help! Though you will get lots of it, a lovely forum with lots of knowledgeable, caring and humorous members. Take care and thanks again. xx
You're welcome! & No prob: it's great to meet another hypogam: we're few & far between...I only know 1 personally (she has SLE like me). Sounds like they're planning IV Ig for you...it should help you a lot. Hope you'll keep in touch. Wishing you every good wish! 🍀🍀🍀🍀
Thanks Barnclown, I'm sure we will be in touch! I must admit it was a new one on me! Will be nice to keep each other posted. Being a b nuisance can you tell me if you have put weight on? I have gained loads, always blamed the steroids, but am I right in thinking it could be the hypogam? Xx
Hmmm...haven't heard of hypogam making anyone gain weight, but maybe it can...although of course we know higher dose steroids can do this (as I understand it, 10mg + daily). Hope you'll let me know what your drs say. Please feel free to PM me if you feel like it...it may take me some time to get back to you...depending on how my bod is doing...but I'd do my best)XO
Ah maybe it's just steroids and chocolate then! Will defo PM you re hypogam as and when. Thank you. Hope you get as much from HU as I do, speak soon and have a good day. xx
The only way I could remember how to pronounce bronchiectasis is similar to many of the above posts - bronkey - ekta - sis. It's interesting to see all the different methods people use to help pronounce it.
I found it extremely difficult at first and it took me longer than most to remember how to say it. Keep it in your mind that the bronkey part is pronounced like donkey and the rest becomes even easier after that.
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