Think this may be mostly relevant to Bronchiecatasis people (especially anyone who gets the Strep pneumoniae & Haemophilus Influenzae bugs)
I’m really interested to know what symptoms, alarms bells/pre warnings you get when a flare is imminent??
(I always start with a general feeling of being unwell with this aching/stiffness in my shoulders/ neck and feel more tired than usual.) Just wondered if that is familiar to anyone…
Thank you in advance 😊😊
i get a raw feeling in my chest high up , my shoulders and down my arms , i feel irratable and sometimes a sore throat.
Hi Soulboy118 and thank you for your reply, the irritable thing resonates! I’m really snappy and worn out a few days before, usually a precursor that a flare up is on its way. It’s my shoulder neck pain that’s weird, so achy and stiff. Hope your as well as you can be at the moment though 😊
im still proactive in my war with copd and Bcs ,its a never ending fight even when im winning im waiting for a counter attack sneaking in lol , hope your present situation improves
Thank you very much, your story sounds sadly all too familiar and trying to stay well in a pandemic has been/ still is so mentally & physically draining.
Do you have a specialist? 😊
Not for bronchiectasis, i think copd specialists are lets say protective of their treatment i do jave a concultant fir my copd .
Apologies for the late reply Soulboy118, Sounds like Bronch specialists are quite rare. Hope your specialist for COPD is a good one….I know they’re hard to find! 😊
No problem about the time CR . Yes my specialist is a good one , had her for several years now and we have quite a good rappor , i do enjoy seeing her
Ah that’s great that you’ve got a good specialist! And the fact that I’ve now got a fantastic GP should give us all a bit of hope that there are some good ones out there! 😊
My god yes, we need at least one person we tryst and who is familiar with us as individuals , im glad your gp is showing promise
hello CandiR. My exacerbations tend to come on the back of a chest virus. So I will already be feeling horrible with a more insistant cough than usual. Then lots more sputum which is darker in colour than usual and totally worn out.
Hi Littlepom. Thank you for your reply, it’s just difficult explaining to someone ‘well’ (like a GP) how you feel, describing it is very hard, lately I’m getting all the usual Broch flare symptoms, but not coughing anything up like I used to do!?! 🤷♀️
That’s a difficult one. There is obviously something going on because you feel horrible. The last time I felt like that but couldn’t cough anything up it was because I actually had pneumonia and an empyema where the mucus is in the cavity outside the lung. I visited the GP four times who failed to recognise it and ended up taking myself to A&E at the hospital where my consultant is. I ended up having it drained and four weeks of IV. Keep insisting that your GP investigate it. A simple xray would show up any problems like that.
What would we do without you and your superb knowledge Littlepom!? You’ve obviously been through hell and back and learnt out of experience….unfortunately for you.
Thanks so much for your valid input 🙏🏼☺️☺️
sorry to hop onto OP’s post, did they only notice pneumonia and empyema after getting an X-ray? I just got an X-ray myself and will get results tomorrow, however I won’t get Doc app to interpret till Monday. I’m a little concerned myself as I had a chest infection, thought I could shake it off myself but on week 6 decided to get antibiotics, now on week 8 and not sure I’ve shaken it off really. Sorry to hear you had gone through the wars! I hope it hasn’t caused lasting damaged for you x
Hi health8ay34i. I’m jumping on your post now! Just wondered if you’d been offered any steroids? You sound like your really going through it, sending well wishes ☺️
thanks for replying, I am on steroids (inhaler). I’ve never experienced anything like this before other than when I had covid in 2020. Have a had a clean bill of health all my life (I am now 27). I think my x Ray will get issued to my GP today so hoping for interpreting soon!
Oh you sound like me at the beginning of my ‘weird health’ journey…I was about your age when it all kicked off too!
I’m 45 now, but you sound far more proactive than I was at that age so that’s great!
My ‘vague diagnosis’ all started with an X-ray too when I was about 35, be interesting to see what they discover on yours then it may lead you down the CT scan route perhaps. (And yes, an X Ray can detect Pneumonia)
My best advice would be….ask for sputum samples when you do cough nasty stuff up, that was my breakthrough moment, when it always comes back from the lab saying ‘Haemophilius Influenzae & Strep Pneumoniae’ you’ve then got the evidence that there is something underlying. Then you get listened too more (hopefully)
What are your symptoms at the moment? That’s a long course of antibiotics isn’t it, poor you.
I’m presuming your GP is waiting for your X ray results before giving you steroids (ie tablets, Prednisone) X
I just got my X-ray results - all in the clear. I finished my antibiotics about 2 weeks ago and Doc said give it another 4 weeks (so 6 weeks in total) to see how symptoms are. I’m not coughing at all now, just a very dry throat and sometimes dry mouth.
Hello again Littlepom, just wanted to let you know the ‘good news’ (well, good in our world anyway 😆) I spoke to a very good GP today (wow!) she’s referred me to a different specialist here in York (I was discharged from my last one in Harrogate for no reason)
AND she’s got me the Hib antibody blood test that I’ve been asking for! She’s also put me on Prednisone as well as Doxycycline (my oxygen levels were rubbish) so hopefully I’m heading in the right direction now.
Thank you once again for all your valuable information and help ☺️🙏🏼
hi Candir, i just feel like crap, pains all around my ribs, tight chest, breathing shallow, im feeling like it now, think i need to book a gp appointment today as im off on hols next Monday.
Hi Egoa and so sorry to hear you feel so awful, if its any consolation, so do I.
I sincerely hope you have a decent GP! Thank you for your reply and sending you speedy recovery in time for your hols 😊
hi i am in a flare up now,achy,shoulders back and flushed .chesty cough yellow sputum and started amoxicillin on friday as i grow haemophillis influenzae regularly .
Thank you for taking time to reply Boxermad, the achy shoulders thing is very familiar, sorry to hear you feel like this! I’m trying to get another Hib vaccine (for the growth of Haemo Influenzae) as I’m convinced it helped me once and now it’s waning.
Wishing you a speedy recovery ☺️
A flare up and an incipient chest infection can have similar symptoms as I found out earlier this month. Went to A&E with breathlessness and shakiness (does anyone else have that?) and was told to start antibiotics immediately. I had already taken my first steroids thinking it was just a flare up as there was no change in my mucus production.
Thanks for taking the time to reply Tykelady, sorry to hear you’ve had to face A&E.
You sound very similar, I too have been very breathless for about 3 weeks now, I only get shaky when I’ve over done it with my inhalers! I started my rescue pack of Doxycycline thinking it’s the start of a flare but like you, not coughing any up.
It’s very difficult to get a ‘diagnosis’ when you don’t have a rattling chest as you can’t see or hear anything, it’s all about description! 😩
I think it’s very individual and depends on what triggers the exacerbation. Quite often I’ll have a low lying infection that’s not terrible but it flares up the bronch and I get stuck in a vicious cycle.
I get night sweats when I’m about to have an exacerbation and then I have them non-stop until I get things under control.
It’s not anyone’s favourite activity but IME, I find the best thing to do when I start feeling like this, is quickly get on top of airway clearance and increase the amount of airway clearance asap.
Thanks so much for your reply Crashdoll, I too get awful sweats, especially in my sleep, you wake up drenched and frozen! Awful.
I think what you said re low lying infection is probably what’s happening to me right now, I’ve started my Doxycycline as all the warning signs were there! 🥺
I think you’ve made a good decision to start the antibiotics. I’ve learned that it’s better to start them promptly before the infection rages out of control.
Hope you start to feel a bit brighter soon. Take care and make sure you get plenty of rest.
Many times it’s my oximeter reading that lets me know. No symptoms at first.
Hi Maricopa and thank you for your reply…that’s very interesting thanks, what’s your lowest Oximeter reading before/during a flare if you don’t mind me asking?
I’m fluctuating between 91 and 96 (did drop to 88 at one point, but I’m pretty sure it was a faulty reading) I hope! 😊
For me, the first signs are usually sore lungs and a very unpleasant taste in my mouth. I agree with crashdoll about taking abx quickly (& in fact these are my consultant’s instructions), and also about increasing airway clearance. The only problem with that is, if your lungs are sore, too much huffing & coughing can irritate them, so I do shorter but more frequent sessions. I hope you feel better once the doxy kicks in x
Thanks so much for your reply Hanne62, the Doxycycline is now definitely kicking in now! So glad I started them!
I used to get the unpleasant taste but not lately, my symptoms have changed over this last two years, not coughing up anywhere near as much as I was two years ago BUT suffering with the illness from recurrent infections more frequently (Strep Pneumoniae & Haemophilius Influenzae)
Hope you are feeling as good as you can be at the moment X
Phew, that must be a relief! Are there any prophylactic antibiotics you could take, to keep the strep & h.influenzae at bay? At the beginning of my bx “journey”, over 25yrs ago, I was prescribed 3 different abx to rotate, swapping them every 2wks. They were amoxicillin, clarithromycin, and one I’ve forgotten!
Hi again Hanne62 and huge apologies for the late response! Sorry to hear you’ve been at this for 25yrs! bloomin hard work to say the least!
Now that rotation of antibiotics sounds very interesting! I think I’m at the prophylactic antibiotics stage again (the other antibiotics you couldn’t remember may have been Azythromycin perhaps) I did have a relatively good two years for some unknown reason (personally I’m convinced it’s due to my Hib/ Pneumonia vaccines waning)
But the really good news is I have spoke to a very good GP today (shock horror!) she’s referred me to a different specialist (I was discharged from my last one for no reason) AND she’s got me the Hib antibody blood test that I’ve been asking for! She’s brill.
She’s also put me on Prednisone as well as Doxycycline, so hopefully I’m heading in the right direction (didn’t fancy A&E and then bringing Covid back as well) 😱
Thank you again for all your advice ☺️🙏🏼
Gosh don’t apologise Candi, I know how it is. SO glad you’ve got hold of a good gp, they appear to be like gold dust these days. I really hope you pick up now. Sometimes it doesn’t take much - just a tweaking of meds or trying something new - to turn things round, so keep on keeping on 😘
Thanks so much Hanne62, she’s a fab GP (never said that sentence before) 😆 I’m very lucky to have one!
Stay as well as possible and thank you for all your fab advice, words of wisdom ☺️X
Hi Candi I know this post was a while back but I just did a search as my consultant has just discovered that I have grown Haemophilus influenzae after suffering quite significantly for about 5 years to the point it has been quite debilitating! And I have been completely maxed out on asthma medication! before this I had no chest issues x anyway looks like I will probably be put on 3 months of azithromycin but I just wondered do they vaccinate you if no antibodies are found?or what happens after they check x or any other advice would be good 😊
Hi tedromie and apologies for the late response! Only just seen your reply now. Anyway, sorry to hear you’ve also had this rubbish infection, makes you so bloomin poorly doesn’t it.
Doxycycline works a treat for mine, unfortunately Azithromycin makes me feel dreadful, are you on the Azith now?
And re vaccination, my old respiratory specialist sent me for the Pneumonia vaccine and the Hib vaccine (which is normally for children) without actually having had checked my antibodies at all, it was a godsend! I’ve just had my pneumonia vaccine again (as 5 years have passed) and it’s always a game changer, I hope it will be for you too 🤞☺️
Hi CandiR
Sorry it’s taken me ages to reply I have been started on azithromycin but have come out in an itchy rash and now I remember this happening last time, so I have emailed respiratory to get them to change it. But I don’t really want to go on Doxycycline as I know it causes sun sensitivity and I am out walking the dog all the time. I have a big operation coming up so am getting fit, as I have the brca2 gene and am having a double mastectomy and reconstruction later in the year. So am not sure 🤔 what my options will be 😫
Thanks for your reply x
Have you had pneumococcal vaccine? I used to get strep pneumoniae but not after it as I get it + flu jab every year
For me, the sputum production increases, body aches , rib pains, a fever indicate exacerbations
Going to have an exacerbation symptoms are body aches and coughing a lot more than usual (This is the time to have a sputum culture).
fatigue, mood swings, irritability remain constant😞
Best wishes!
Sufferer197104
Apologies Sufferer197104!! I don’t know why I hadn’t seen your post before now! Thank you very much for your reply and that sounds pretty identical to me, I did have a pneumonia vaccine and a Hib vaccine about 3 yrs ago and that gave me a couple of pretty good years to be honest, but now I’m getting a lot more frequent infections. How often do you get the Pneumonia vaccine then if you don’t mind me asking? ☺️
I had it 2 years ago, but also got recurring chest infection after that due to pseudomonas
Do ask them to recheck yr antibodies to pneumococcal&hib
Hi Patk1 and thank you, is the correct procedure supposed to be that they do this quite regularly??
And does the Hib antibody test ALSO detect Strep Pneumoniae antibodies too??
Sorry to over question you! ☺️☺️
They should check thm petiodically as u must have b lpw in antibodies to be imminised.i got hib pneumoniss frequently b4 being immunised.it raised my levels but hey presto!left unchecked and i was severely ill for 3mths this year with hib pneumonia and ive not recovered.hib wont check for that.query it with yr dr.
Its hard whn ill ,but these days post covid,lots of us are having to b very proactive with our own healthcare.dont slip thro the net as i dif.Every infection causes irreparable damage x
That really is valuable information there Patk1….thank you very much for replying.
That’s exactly how I feel, after the Hib vaccine I was great for two years! But now, like you, left unchecked, I’m getting Hib/Pneumoniae infections again.
I’ll keep on being as proactive as humanly possible! Thank you and hope you feel better very soon X ☺️
Mine come out of the blue. Can be fine one day , wham the next. I have managed to control it (mostly) this year with a regular antibiotic. Unfortunately (sic) had a good spell when I turned up for a PIP review. Lost the PIP.
Hi Batman1313 and apologies for the very late response !! Thank you for your reply, mine also seem to be out of the blue lately, just wake up one morning with that awful aching in shoulders pain/general unwell feeling and just know what’s coming!
Also, I’m so sorry to hear you lost your Pip! That’s dreadful, can you appeal? I too receive Pip payments, not been receiving them that long as I didn’t realise I was eligible! I’ve also got my review coming up….I hope you do appeal ☺️
Like you I get the achy shoulders and general fatigue. Annoyingly I also find that I tend to cough less at the start of a flare, or that my cough becomes less productive. I’m still not the best at picking up on the signals though and need to be a little more proactive in my self care.
Apologies for the late response Poppins23! And thank you for your reply, you sound exactly the same as me, I used to have a very productive cough about 5 years ago, but now mostly I think hmmmmm, now is this my ‘usual’ or am I just getting a virus!? (When actually, I think we do know it’s a flare!)
But I have started taking the rescue meds as soon as I get that weird shoulder pain and unwell feeling, I don’t mess about now…because that’s when we end up in hospital isn’t it! 🥺 Take care ☺️
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