I have had asthma since I was a teenager and excema all my life. I am 57 years old. For most of my life, I have managed my asthma well. I was very sporty in my youth playing squash, badminton and tennis. I could go for very long walks with my dogs up until about 18mths ago. So I have always regarded myself as quite fit.
Since last December 2022, I have been suffering with a recurring a phlegmy cough, numerous chest infections, breathlessness, lethargy and at one point, sinusitis.
In this past year I have had numerous appointments with my asthma nurse, GPs and have been seeing a Respiratory Consultant privately.
I have given 4 sputum tests - 1 showing a low bacteria growth of Haemophilus Influenzae and another showing a high growth of the same bacteria. I have had 2 chest x-rays - both have shown to be normal. The consultant requested a rigorous allergy test (bloods) - this showed that I'm allergic to pretty much everything, from moulds and pollen, to dog hair!
Over this year, I have had 4 courses of steroids, and 3 courses of antibiotics - Doxycycline - 1 course for 3 weeks and another course for 2 weeks. My asthma medication was changed in March from Flutiform 125mg to Symbicort 200/6. I felt even worse on this and I insisted my asthma nurse put me back on Flutiform. This she did, very reluctantly.
As things weren't improving, I went to see a respiratory consultant privately. I had a CT scan to check for bronchiectasis - that was clear. It showed minor bronchial wall thickening. Scattered central opacification with minor mosaic attenuation mainly in right lung consistent with small airways disease. No ILD. He then upped my Flutiform dose to 250mg/10mg and prescribed mometesone nasal spray and montelukast.
My last appointment with my consultant was back at the beginning of November - which was after the 3 week's course of Doxycycline. I did another sputum test and this showed normal and it looked like I had improved on the antibiotics. He said to 'sit tight' over the Winter and continue with the 250mg Flutiform. He suggested that should I get another 2 exacerbations over the Winter, then the next course of action would be a low, long course of antibiotics in the Spring.
Safe to say, that within a week of seeing the consultant, I picked up another really nasty chest infection. My GP prescribed a weeks course of steroids and a 2 week course of Doxycycline, as the sputum test showed a high level of the same bacteria again. I stayed at home and rested for 3 weeks. I am a teacher.
I returned to work and on the day of my return, I started to cough again. I went back to the GP again last week. I told her that the consultant had suggested a low, long-term dose of antibiotics should I get another 2 infections over the winter but she was reluctant to do this, stating that she would need to see the result of another sputum test first. So, she asked for another sputum test, sent me for another chest x-ray and changed my asthma medication to Trimbow 87/5/9mg. Both the sputum test and chest x-ray came back clear.
I've been back at work for 2 weeks now and my phlegmy cough has returned in abundance once again, making me feel breathless and lacking in energy - my upper back aches - I'm sure it's from all the coughing.
I am at my wits end, as this has been ongoing for nearly a year now.
Does anyone have any advice for me going forward please? Thanks in advance.
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Teach66
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Hi sorry to hear your suffering with it all. I am the same had loads of antibiotics this year I'm still.sufferimg after getting rsv flu month ago , I'm under guys Hospital, the A and E doctor said to go on long term antibiotics, my consultant won't without evidence of sputum samples, keeps saying as I work in school, it's viral they won't do anything. The consultant is the only one who can prescribe it can u go back and ask them. I'm on flutiform 250.
Hello Jolu29,I'm sorry yo hear that you have been suffering too. Yes, I had a feeling that it was the consultant who can only prescribe the low, long-term antibiotics. 😔
I've been in tears to them no difference I've got to be off again half pay get sample before they will do anything so annoying. I will be trying my doctor over Xmas. Good luck let me know if anything happens.
I absolutely get your post! This was me a few years ago although I was never told there was H I in the sputum tests, there was often aspergillus in it. Mine went on for over 4 years & included 5 x pneumonia. Because all my gp appointments were emergency ones no-one joined the dots until finally a really good gp did (a great pity I hadn't seen him before), 19th Dec 2010 (had been organising husband's funeral) GP picked up the phone to get an ambulance I was so ill with pneumonia again. I begged for strong antibiotics and promised to do A&E if I worsened. He put me on a 2-4 month course of Azithromycin 500mgs, one per day for 4 days then 7 days off. Amazingly it worked. I've never read of anyone else prescribed Azith as a cure though. I was also diagnosed with Small Airways Disease by hospital consultant (finally but lung damage remains). Hopefully members will be along who've had Haemophilus Influenzae, I know its a very stubborn bug indeed to treat, you need specific antibiotics for a sufficient length of time.
# Jolu29 & Teach66 - It seems GPs don't/ won't accept that with lung compromised patients any virus can very quickly become a bacterial infection when there's phlegm trapped in lungs. It's a perfect warm wet environment for bugs to multiply - fast! Plus the fact that patients with a history of successive infections will have zero immunity left to fight the bugs.
It took me a while but I rebuilt my immune system by throwing everything at for some time including high strength manuka honey, tonics, multivitamin/minerals.
Having learnt from members here I take high dose of vitamin D3. At the first throat tickle I use an antiseptic throat spray and first sign of snuffle &/or coloured phlegm I drink effervescent vit C 1000mg. Those 2 things now seem to work at keeping me infection free.
Luckily for me an excellent respiratory nurse insisted my now GP prescribe prophylactic winter antibiotics = Azithromycin 250mgs on Mon Wed Fri November to April.
Sorry for long waffling reply, I have CFS (chronic fatigue syndrome) as a result of years of those viruses/bacterial infections. I'd hate for anyone else to get it as a result of poor medical care. All the best to you
Peege,Thanks for this. I have rung the helpline and spoken to the specialist respiratory nurses several times this year. They were very helpful but it's the GPs and consultant who have the ultimate say in the advice and medication they are willing to offer. 😔
Thank you for your response. I'm sorry for all the suffering that you have had to go through, too.
Yes, I've read that Azithromycin can be a game changer for some people, so I will discuss this again with my GP when I speak to her on Tuesday. I hope she will listen to me. Surely it can't just be down to the consultant to be able to only prescribe Azithromycin?
I forgot to mention that I also take Fexofenadine antihistamines tablets too.
I also mentioned to my consultant that I suffer with acid reflux. So he also prescribed Omeprazole. It's helped with my acid reflux, but I don't believe it's helping me to combat the mucus cough.
You say you suffer from CFS now. I'm sorry to hear that too. I worry that with everything my chest has had to put up with this year, the same will happen to me.
I do believe that taking some extra vitamins is also the way to go to build up our immune system. At what point did you start taking these please?
I think in 2013 - it took that long to get a referral to St George's, SW London, I think I'd had pneumonia 4 - 5 times by Dec 2010 when I was in late 50s. I'd always been so fit & healthy but I think once you've had a few infections immunity plummets & you catch yet another cold (especially in education) which goes straight to lungs. If ever anyone says to me it's just a virus 😡😡😡🤬........
I joined this forum in march '13, started buying good quality vits & high strength Manuka honey, it was £45 per pot then . I got mid strength to take once I thought I was stronger.Looking back though I believe I had humdinger of bronchitis every Christmas holiday from the 90s but because I was invincible I didn't go to gp. I had absolutely no knowledge of how wrong I was or what lung disease is. If you're hard up then try the effervescent vitamin c 1000mg , two drinks per day NB some folks can't tolerate it but worth a try. I also have acid reflux 🙄...never smoked.
We could be twins , im on my 8th course of antibiotics and steroids since i caught a nasty infection back in March.Same with sputum tests bacteria then clear next, this cough is a killer let alone being suffocated by phlegm .I have been referred to Guys asthma clinic and finally got a appointment in Feb 2024 to have biologic injections as all my inhalers doing practically nothing . When on the steroids oximeter has me reading 97 cough /phlegm is next to nothing 2 weeks later after the medication oxymeter on 93/92 ,cough /phlegm choking me..praying these injections will help this has been my worst year .
Teaching is a stressful job and it might be tiredness exacerbated by illness that is making you suffer more - as well as the viruses the children bring in. I assume you're in a union, so talk to your rep about the chances of working part time, or anything you think would make your job easier, before you see your head, who has a duty of care towards you. If you felt better with 3 weeks' rest, you might consider all this. Good luck!
I agree, teaching is a very stressful job. I reduced my hours last year and I now only work 3 days a week. But even this is tiring me out! And you're right, the children bring their viruses to school with them too. There's no getting away from this.
I am in a union but I'm not sure there is anything else that can be done in my work to alleviate this problem. As you say, maybe I need to talk with my Headteacher, who has a duty of care, to see what can be done. I'm also wondering whether or not I should include occupational health to see if they can help me?
Ask your GP to refer you to a Respiratory Consultant. I was the same as you last year. I had a Strep Pneumonia.I had a course of Azithromycin in the summer as my Consultant wanted to give me a blast after being on so many antibiotics.
I am taking it again through the winter and so far touch wood it is working.
I also take Montukelast and switched my inhaler from Symbicort to Fostair 200/6
I asked to be referred to a Respiratory Consultant via the NHS but was told that the wait would be very long. So, I opted to go privately.
It was the consultant who prescribed the higher dose of Flutiform, Mometesone nasal spray, Montelukast and Omeprazole. He also suggested prescribing a low, long-term course of antibiotics should I get another 2 exacerbations through the winter. I've already had one since he said this. I recovered following one week's course of steroids and a 2 week course of antibiotics. Unfortunately, within 2 weeks, my chest is not right again. I feel like I have to wait to become really ill again before the GP or Consultant actually do something to help me and I don't think this is fair, considering I've been like this all year! 😔 Plus, I can't see my consultant again until mid January. It's so frustrating.
I am speaking to my GP again on Tuesday and I will try my best to persuade her to give me the long-term antibiotics as I think this is what I need. Please keep your fingers crossed for me.
Defibately!Ask about going on Azithromycin. It's a game changer. With all the infections you are getting also ask about a repeat CT scan. I discovered I have mild bronchiectasis on top of my asthma and pneumonia at the time.
It's no wonder Yr run down,I know from many infections with hib it's nasty + hard to shake off.at least school hols r near.perhaps boost immunity with supplements.im using vicks rescue spray + coldzyme mouth spray to help ward off viruses which trigger lung infections.With Yr allergies+ change in asthma symptoms,no wonder Yr phlegmy + coughing.i know my 5yr old grandson + I are
I'd ring consultants secretary to get a letter for gp to prescribe ? Azithromycin longterm.
I have decided to stay at home for this last week. I don't want to get even worse for the Christmas hols.
I will definitely look into adding some vitamins and supplements into my regime.
I have emailed the consultant's secretary three times over another matter but she hasn't replied to any of my emails. It's very annoying and frustrating 😒. I will try and ring her on Monday morning and put this request in.
Crikey! Yes,I'd ring her & tell her exactly what u need,ASAP.i think Yr wise taking last wk off.I also use ' coldzyme ' and 'vicks rescue nose spray' - supposed to kill viruses reducing risk of getting infected.i use it if with grandsons in car or in a shop etc x
Yes, been there, got the t-shirt. My consultant put me on a 4 month course of low dose Azithromycin and it worked wonders. GPs are reluctant but I've now got the consultant's letter on my records, but even then I face reluctance from certain GPs.
I've had two separate courses of Azithromycin, with a 3 year gap. So it really helped me get on top of the underlying problem, which wasn't responding to the usual cycle of steroids and antibiotics.
I think you'll need to arrange for a letter from your consultant to the GP in order to secure the treatment they suggested. Try and get that done before Christmas.
Yes, been there, got the t-shirt. My consultant put me on a 4 month course of low dose Azithromycin and it worked wonders. GPs are reluctant but I've now got the consultant's letter on my records, but even then I face reluctance from certain GPs.
I've had two separate courses of Azithromycin, with a 3 year gap. So it really helped me get on top of the underlying problem, which wasn't responding to the usual cycle of steroids and antibiotics.
I think you'll need to arrange for a letter from your consultant to the GP in order to secure the treatment they suggested. Try and get that done before Christmas.
This link to ongoing research helps explain why Azithromycin can help in cases of stubborn cases of repeated infections and exacerbations. oxfordbrc.nihr.ac.uk/oxford...
Another gate keeper secretary! 😧 A strong start to the telephone conversation may get you through to some common sense on their part. Maybe start by saying your Dr xxx's private patient and would like to take him/her up on their offer of a low dose, long course of the macrolide antibiotic. And could that be facilitated this week?
Any push back and say that you're disappointed but happy to wait while they double check. Always be ready with a "I expect a plan of action" rather than just a wait and see.
I went for an emergency appointment at my surgery this morning. I am still feeling awful - aching, breathless and producing green phlegm.
I didn't have long with the GP - 5 minutes. I told him how I was feeling - awful and frustrated. He listened. I explained my history and asked him about the consultant's next course of action - the low, long antibiotic. He confirmed that the consultant was the only one who could prescibe this. Suffice to say, he prescribed me another course of prednisolone and doxycycline, without even asking for a sputum test this time 💁🏼♀️.
I have also spoken to my consultant's secretary to request his recommendation for a different course of treatment, i.e. the low, long antibiotic. She asked me to put my request in another email and assured me that she would forward this to him. I'm hoping that the consultant acts upon my email quickly, but I'm not holding out much hope. Other than that, I have to wait until 16th January to see him.
So I have a normal GP appointment tomorrow. I am going to ask for another sputum test and query the change in my inhaler. I didn't feel like the Trimbow was helping, so I've gone back to taking the Flutiform - that was what the consultant recommended anyway.
And now I just have to hope that my consultant acts upon my email. 🤞🏻
I have my fingers crossed for you. If your consultant does come through with the macrolide antibiotic treatment, my next step would be to get them to write to the GP with a recommendation that you can have this treatment as and when, without having to go through the consultant every time. That will then be on your GP records (make sure you keep a record as these things can be overlooked or buried).
I am exactly the same as you, been struggling with a cough and reoccurring chest infections but not getting anywhere. My asthma nurse isn't available for the foreseeable the GP's just don't want to know and I have been waiting for a referral appointment for over 30 weeks now. At the end of my tether with it all.
Pulled rib muscles 3 times and lost count of the antibiotics, steroids and inhalers I have had. Not made any difference. Got told to call 111 or go to A&E when I did get a doctors appointment as they didn't know what to do.
Not had a sputum test though so that maybe my next shout.
Yes, the doctors really need to know what they are dealing with, so that they can give you the correct antibiotic. Next time you are really phlegmy again, I would request a sputum test.
Following on from this post, I suffered yet another chest infection, so I went back to my GP. I was prescribed yet another course of steroids and antibiotics even though a sputum test came back normal. This medication did help but I still had lots of phlegm and coughing.
Having read about people's experiences on here, I asked my GP if she would refer me to a Pulmonary rehabiliation programme. I also checked that I was still on the waiting list to see a respiratory consultant via the NHS, which I am.
I didn't have to wait too long in my area to get onto the pulmonary rehab programme - I think from the time of the referral to attending the course, it took a few weeks, which I was very surprised and pleased about. Suffice to say, it has been a game changer!
They gave me an initial assessment and the respiratory nurse suggested that the root of my problems with my asthma and with the amount of exacerbations I have had in the last year, was probably down to poor medication management. They then made a referral for me to see a senior respiratory nurse at my local hospital. They also advised that the private consultant that I had been paying to see, was not suited to my needs. Suffice to say, the day they told me that, I actually had an appointment to see him the day after - I went home and cancelled that appointment straight away! Who'd have thought!
I have completed the six week/twice a week rehabilation course today - I have my post assessment next week. As I said, this has been a game changer for me. My last exacerbation was before Christmas and touch wood, since doing the rehab course, I have not suffered with another exacerbation. Don't get me wrong - I still suffer with phlegm and a cough, but it not as bad as it was. I can breathe again. I can exercise. I can climb the stairs without getting breathless. I can go for a long walk and even a hike up my nearest mountain - so I am feeling so much better - and I think it is down to the rehab programme.
Two weeks ago I got to see the specialist respiratory nurse at my local hospital (referred from the nurse at the pulmonary rehab programme) and we had a long chat about my medical history and I explained the problems that I'd been having with my chest over this last year. She suggested that I try an additional inhaler - spiriva respimat - on top of the flutiform that I already take. That prescription was sent to my surgery and I collected it today. I have yet to see how this will help but I'm feeling very positive now. This specialist nurse has also referred me for a lung function test with a consultant, which I have in the next few weeks.
I have my annual review with my asthma nurse at my surgery today. We'll see what she says with regards to all that has happened over these last few weeks.
As I have said, things are looking so much better for me now and my chest is feeling so much better too. I have also taken the decision to retire, so I finish work at the end of Easter. This might also have some bearing on how I am feeling lol!
I would be interested to hear what your symptoms have been, what you have tried and what the doctors/nurses have done/are doing for you.
thank you so much for the reply I am so glad to hear you are feeling better and have good support.
Here has been my fun journey:
Fit and well, 34 years old with two young kids so used to them bringing home all sorts. No history of asthma
Caught viral first week January from toddler, I presented with bad cough, fever headache etc. tried to wait it out but it developed into a chest infection a few weeks in. I handed sputum sample into doctor, they prescribed 1 week doxy. Sample came back highly positive for hemophilus influenza. Told me to continue on doxy as it was sensitive to it.
I felt a bit better after a few days, finished the course. Few days after finishing course I swung back to fever, cough and extremely wheezy. This time it was also in my sinuses and gave me horrendous sinusitis. I had very productive cough with yellow mucus (TMI!!).
Went back to GP and was given doxy (1 week) with steroids for 5 days due to how wheezy I was. This cycle basically continued until where I am today. Soon as I finish the doxy it comes back. I’ve just finished my 4th!!!! Round of doxy 10 days this time, no steroids. Chest X-ray showed signs of pneumonia and infection
Referred to chest clinic today as still coughing up disgusting mucus. I’ve also self referred myself to ENT privately for the sinusitis as that’s been an ongoing issue for months and NHS waitlist is crazy. I’m so exhausted and fed up of feeling ill. I’ve been off work now for 3 weeks and this has been going on since start of jan. Feel like I’ll never be better. Last Sputum test is still showing hemophilus so Gp has now given me 1 week of a trimethoprim type antibiotic to try.
I'm so sorry to hear that you feel and have been feeling so unwell. The respiratory nurse told me that the haemophilus influenzae bacteria is a stubborn one to clear up. My private consultant recommended a 3 week course of Doxycycline to help when my chest of really bad. I have to say, it did help. Maybe you need a longer course of antibiotics?
Have they prescribed you a steroid nasal spray or nasal drops for the sinusitis? I had a nasty bout of sinusitis last year and the nasal drops really helped- it took some time but it did eventually clear up. I now take mometesone nasal spray and have been ok since.
So I have asked for longer course of doxy, but they were very very reluctant to give me 10 days…
Now switching onto this new one which is only a week, they want me to “watch and wait” before I take it but being honest I’m just going to start it as I cannot bare to slide back to being that poorly again.
I actually just got prescribed mometesone about ten days ago so I’ve been doing that a few times a day plus using my netipot sinus rinse. It’s very very slowly getting better but still having pressure and yellow post nasal drip. Don’t think I’ve ever been unwell or tired in my whole life and that was even post birth with a baby 😅
Really hoping this last course of different antibiotics fully shifts it for good. I’ve felt the Gp has been totally baffled for why a week of doxy isn’t clearing it, but reading on here that’s extremely common.
I've got my fingers crossed for you. I totally understand how you feel. It can be so frustrating and you just feel like no one is listening to you half the time. Good luck. 🤞🏻
hi Teach, Iv been reading your posts. I’ve recently been told I have small airway disease. Maybe also chronic bronchitis - or sever asthma. I can never get a straight answer. What did you find helps bear? I’m on a very strong triple therapy inhaler - in fact I don’t think you can get any stronger. But I’m weak all the time, air hunger, and likely air trapping also. You found pulmonary rehab good? Thanks PW (M40)
Yes, I found that the pulmonary rehabilitation course helped a lot. In fact, it got me back on the road to exercise again and that's been key. I have more energy and I'm not breathlessness like I was. I haven't suffered from an exacerbation for a while now. I still suffer from a phlegmy cough though and my allergies this year have been through the roof, to the point where the GP put me on a low dose of prednisolone steroid tablets for a month back in March. That helped but I didn't want to be on steroids indefinitely.
I take the flutiform 250mg inhaler, 2 puffs, 2 x day, Montelukast 10mg, 1 x day, Fexofenadine 180mg, 1 x day (this week I've switched to cetirizine for my allergies as I felt the fexofenadine wasn't working for me) and mometesone nasal spray, 2 puffs, 1 x day.
I'm seeing an NHS respiratory consultant at the beginning of July, so I can't wait to see what they say and advise going forward.
I'm not sure if that helps you. This is a good site where you can find lots of information and advice.
Thanks so much teach. I’m don’t think just gp will put me on pulmonary rehab - she’s absolutely useless! It the crux of pulmonary rehab to get you to exercise as much as you can?
I’m on enzenair which is a triple therapy inhaler. It seems to have worked a bit. Do you lungs feel stiff with the small airways disease element? That’s the only way I can describe it. Also do you have any air trapping which I understand is very common in small airways diesease?
Yes, pulmonary rehabilitation is where you attend a class once a week for 6 weeks. Not only do you undertake an exercise program, which is geared to you personally, but you also attend information sessions - in my class there were about 10 of us, all with varying degrees of lung conditions. We would undertake our exercise program for the first hour and then attend the information session after. I found it all extremely beneficial. I also lost a few pounds in weight - which I badly needed to do - a bonus! The respiratory team can then refer you on for further exercise classes (GP referral scheme) with your local council run leisure centre if you would like to carry on with exercise. I opted to take out a membership subscription with my local leisure centre as I prefer to play racket sports and this wasn't part of the GP referral scheme. So I now play badminton once a week and occasionally play squash too. I am able to walk the dog further too - I did a 5 mile hike the other day - something I wasn't able to do this time last year.
I don't get a stiffness in my lungs like you do. My main problem at the moment, and has been for some time now, is the amount of phlegm I produce. As far as 'air trapping' is concerned, I'm not really sure what you mean, sorry.
I have been to see a respiratory consultant via the NHS at last today.
A really lovely bloke!
He asked me lots of questions regarding my medical history, etc. and took the time to listen to me and read my medical history notes. After carefully studying my history, my current and past levels of medication and respiratory/blood test results, he concluded that there were two options that he could follow:-
Option 1: Prescribe the low dose antibiotic Azithromycin - he shared the side effects information with me and his view was that some of the side effects weren't particularly nice, e.g. onset of tinnitus, stating that other patients had experienced this.
Option 2: Having studied my history, in his opinion, I also qualify for biologic therapy and he recommended Tezepelumab. He carefully explained the process of having this and the associated side effects - anaphlaxis being the main one. I will aslo need to do an ECG prior to being prescribed this. He also said that this is a relatively new drug.
I opted for the biologic therapy. He now has to take this decision to a panel who meet in 4 weeks time. Fingers crossed the panel approve his recommendation. I have done some research into this drug and from what I've read so far, the results seem very positive.
Has anyone else been prescribed Tezepelumab? What are your experiences of it and did the treatment work for you?
I have just read your previous post, I’m sorry to say it reads exactly the same as myself! Can I ask how you are feeling now? I started with HI last nov and still have it taking over 6 lots of antibiotics and now given another 6 months of azithromycin!
I still have a phlegmy cough which can be a bit debilitating. However, I haven't had an infection for a few weeks. I did have covid a few weeks ago which set me back a little, but I made a good recovery. I take 250mg Flutiform and montelukast for my asthma. I have been told I have atopic eosinophilic asthma.
I am still able to exercise. I play badminton once a week, walk the dog most days and I am able to carry out jobs around the house and garden without too much effort, which is a good improvement from this time last year.
I'm still waiting for the panel to meet at the hospital, as I've been put forward for biologic therapy. I haven't taken azithromycin. Has the consultant discussed your medication options with you?
my last sputum test still has mild HI so I am on the antibiotics for now, but my breathing on walking uphills is awful and takes me a while to get it back down even with the ventalin inhaler! Glad you are feeling better though!
I haven't needed to do a sputum test for a while now, thankfully. Like you, I find walking uphill a struggle too. It's not a nice situation to be in and I can totally empathise with you. When was the last time you discussed your medication with a GP, respiratory nurse or consultant?
Only a couple of weeks ago next appointment is with the physio end of Aug to see if she can help with the coughing up! I’ve been using a flutter value for a couple of weeks and that seems to help shifting it too!! X
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