Any advice?

[LisaLuv3000]

Hi all, 👋 I was wondering whether some of you lovely people might be able to give me some advice.

Apologies in advance for this super long message! 😅

Back in 2017 I had two really bad exacerbations with my asthma, involving lots of pred and antibiotics, which led to me moving from fostair to seretide 250, as well as starting on montekulast, tiotropium, fexofenadine, and some mucadene when things were very bad, did have chest x-rays, but was not referred and things did eventually settle. Main issue was the coughing aggravating everything. Stopped the mucadene and reduced tiotropium intake to just when not well or peak flow dipped.

Sept 2022 it all kicked off again: two weeks of pred and doxycylcline to kick a chest infection. Dec 2022, same again and took about a month to get over. March 2023 - 6+ weeks, including several courses of pred, moving from doxyclcline to amoxycillin, to clarithromycin. This last time led to a trip to A&E as doctor I saw suspected a blood clot, and possibly sepsis, so had x-rays, covid test, and blood tests - all clear and given more pred. Saw one GP who was obsessed with me suffering from acid reflux, which was a typical side effect of pred for me, and put me on omeprazole... as well as more pred. Saw a better GP who finally agreed to refer me, and gave me a steroid nasal spray - mometasone furoate. Things got better, thankfully. Saw consultant in July, who basically said biologics may be the way forward, but got to do lots of tests first - spirometry, feno, blood tests, ct scan, sleep study, and have been started on theophylline. CT scan clear for bronchiectasis, very mild sleep apnoea picked up from sleep study, but not heard about bloods or had a follow up yet.

2 weeks ago I picked up a virus, had a bad attack at work, and ended up back at the doctors. No crackling picked up, but heard wheeze and put me on pred. Told me to let respiratory team know, which I did, and they've booked me in for 10th Nov. Still a mess this Friday, so went back - Saw someone else who did hear crackling, put me on clarithromycin, no steroids, but has booked me in with GP again for a proper review tomorrow.

I know the NHS is struggling, but the last year I have been passed from pillar to post, had one Dr give me pred, another antibiotics, back and to, over and over. 🤦🏻‍♀️

Moving from the pred to antibiotics has kicked my butt - knackered and really achey... Still coughing lots, not getting much up.

Is there anything else I should be asking for or pushing for when I see the GP tomorrow? Or is it that there is not much else they can try now?

Thanks in advance for any ideas or advice.

Lxxx

[Chip_y2kuk]

Is your cough a barking cough?

[LisaLuv3000 in reply to Chip_y2kuk]

Thanks for replying. I don't think so. When it all started, and I was hoping it was just a bit of a cold, it was very tickly and dry. I have done about 5 covid tests, all negative. Mornings it's quite a wet cough, and I do get some yellow/green phlegm up.

[Chip_y2kuk in reply to LisaLuv3000]

Yellow/green phlegm usually does mean "something" bacterial is brewing

But its quite possible what they have given you doesn't "nuke" that specific bacteria .... it may be worth asking for a sputum pot and getting the labels off your gp tomorrow and providing a sputum sample (spit phlegm into the pot and seal it up, take it back to the GP to send to the lab for testing)

Also a chest xray is quite common when it's been going on for a while.... so I would expect a chest xray to be ordered.... mine are never interesting

Also when I say "barking" I mean like crouppy cough (really common in kids)

Also be armed with what you want or at least determined to achieve and as others have said "jump up and down until you get it" ... it took me 7 years to get the correct diagnosis... in between I got told I had everything from heart failiure to anxiety as a reason for breathing difficulties

[Lysistrata Administrator Community Ambassador in reply to Chip_y2kuk]

Yellow/green phlegm just means something is going on that's likely infectious - not necessarily bacterial. You can have either colour phlegm with a viral infection too.

I agree though that if is bacterial it may not be responding to whatever antibiotics you've had, LisaLuv3000, so a sample might make sense if you can produce one. Sounds like it's definitely something going on, and hope GP can help.

[ISew194720 in reply to LisaLuv3000]

what are pred please

[Spikedog66 in reply to ISew194720]

Prednisolone. Shortened name.

[fraid]

Yeh, jump up and down till you get what you need! Write it all down in bullet points so they can't fob you off. You need a cohesive approach so ask for 2nd opinion, book and choose if poss. Good luck.🤞

[LisaLuv3000 in reply to fraid]

Thanks 😊 Yeah, good tip. It definitely helped having it all written down last time, as it can be really hard to advocate for yourself when you're not well, coughing and spluttering. 😣 I'll update my notes 👍

[Lysistrata Administrator Community Ambassador]

What time is your appointment? If you have time, it may be helpful to ring the asthma nurse helpline beforehand as they may be able to suggest things you haven't thought of or didn't know about.

Best of luck with it, sounds like you've had a very difficult time.

0300 2225800 or WhatsApp [phone] Monday-Friday 0915-5pm

[LisaLuv3000 in reply to Lysistrata]

Thanks. 😊 My appointment is 9am tomorrow 🤦🏻‍♀️ It's the GP that referred me though, and she was really supportive last time. 🤞 However, I'll definitely get in touch the asthma nurse helpline, so at least I can get their opinion and follow up, if needed.

[Homely2 Administrator]

Ring asthma UK helpline first thing tomorrow and ask them what to say to gp

My gp practice has 9 GPS only 2 understand asthma, per their own asthma nurse. If you get a gp who does not understand asthma telling them very clearly what you want and why is really helpful.

[LisaLuv3000 in reply to Homely2]

Thanks. My appointment is 9am, but who knows if there'll be a wait - I'll whatsapp them 👍It is the GP who seemed to get it last time, and actually referred me, but we'll see. 🤞

[Loveducks]

Asked to be referred to the Royal Brompton. They are brilliant for treating asthma. You sound exactly the same as I was and unfortunately I have to be on steroids permanently at the moment it has been the only way I stop getting what you are going through now. Inhalers don't really help me and I'm trying to reduce down my steroids and seem to sit happily at 10mg which isn't too bad, I have been invited to try biologics as well as my asthma is very allergic triggered. I have got acid reflux that was confirmed with a camera so looked at my diet and to be honest almost eliminated that now even on the steroids as Omeprazole made no difference. Be careful all the aching isn't due to coming off steroids too quickly as when I first went on them and just finished the course I was very rough with muscle pain and had to wean off them slowly. I get nasal drip with allergy that then leads to the chest infection, but for me the best thing as been a nasal rinse and they gave me flixonase nasal drops, but that practically stops on my steroids.

I think someone else mentioned on here, ask for a sputum sample to be done so they can see exactly what they are dealing with, Royal Brompton would do this.

Good luck, I hope you get it sorted x

[LisaLuv3000 in reply to Loveducks]

Thanks very much for sharing your experience, your advice, and for your kindness.I've been put back on steroids, done a sputum sample, and they booked me for a blood test tomorrow morning.

The GP is hoping that bloods will show a spike in my eosinophil levels, so it hurries the respiratory team on.

I'll have a look into nasal rinses, as I know it helps my sister- she's had brittle asthma since she was little, and has been through all this.

[Loveducks in reply to LisaLuv3000]

You’re really welcome. Glad they are running all the tests and for now unfortunately steroids are the best form of defence. I think it’s called rinse aid, it really does help as I found fexafenadine was drying my nose out.

Something else, which was a tip on here, I am reducing 1mg the first day of every month as advised by the Hospital to see how low I can go and currently now on 13mg, but I take 8mg first thing in the morning then 5mg at 3pm, this seems to then last through the night, quite a few people on this site do this, so might be worth trying as it works for me x

[Patk1]

Yr orob knackered frm infection + exacerbation.u cld do with protecting yrself from viruses,to avoid the probs u been having x

[Evie3]

You certainly have been thro the mill 😞.

I had problems during lockdown and had to pay for private Respiratory chap on zoom. Long story short, after trying different meds..he said I was inhaling my stomach gases. I already had Omeprazole but he prescribed me Domperidone tabs for a month that move food thro the body quickly. I also have my bed head raised. It worked for me then.

I still get chest infections but make sure I get sputum checked to get the correct one.

Hope you get sorted soon🤞

[Shogi]

Really hope your appointment went well this morning, and they listened to what you were saying!

I hope you had a sputum sample taken, as your description sounds like you have an active infection. Proper treatment requires knowing the cause of the infection, and as Lysistrata said, that can come from not only bacterial, but viral infections, and also fungal infections like aspergillosis (Google the Asthma+Lung UK article on Aspergillosis as I can’t get the link to copy and paste).

Aspergillosis is worth testing for, as your symptoms started again in September as before, so any seasonal dampness causing mould indoors, or soil, compost and rotting leaves, plants, trees and crops, dust and bedding, damp buildings, air conditioning systems, can be a source of spores. Just a thought.

Also, try to get good advice on lung clearance from the Helpline Team, because it’s doing no good sitting in your lungs, and harder to clear when you are unwell, and breathing is much harder anyway.

Trying to get to the root cause of symptoms and exacerbations is rarely easy, either from the patient’s or a health professional’s position. It’s often hard to pin down exact triggers or causes, such as environmental, genetics, lifestyle, general health, or medication issues. It’s so often a multiple of these.

Sadly, the treatment of a patient and their illness, can be really influenced by things like others’ own personal opinions, sticking strictly to guidelines and protocols without actually assessing the individual, financial budgets, etc. Lack of communication can work both ways. Patients and medical staff need to know that each understands what the other is saying.

I would never advise anyone what to do medication wise, but have found that not being properly diagnosed or treated for infections in the past, leading to pneumonias and respiratory failures, made my condition progress far quicker than it should have.

I think we are all on this Forum because we all have had, and still are, fighting to be heard and listened to, on all the respiratory issues we have to deal with!

Keep on asking questions, but maybe the Helpline Team here would be best to ask and run things through, before seeing your GP or practice Asthma Clinic. Great you keep a written record/ diary of all your symptoms, medications, appointments, etc, as this can be very useful to actually show anyone, or as a personal reference to help you remember things at an appointment, or especially a hospital admission, where they keep asking questions when you’re struggling to breathe! Also shows anyone that you want to be proactive in managing your condition, and might help show up triggers or causes.

Also, breathing exercises can really help with things whether you are well or unwell. Asthma + Lung UK have one on their site, called “How can I manage my breathlessness?”. If you’ve never had any sort of pulmonary rehab before, this is a great starting point.

Also be aware of your posture and how your muscles tighten up, especially your head, neck, face, throat, chest and rib areas, and back, which affects your whole body, when your respiratory system is under stress. You get into bad habits without knowing it (guilty!) and end up exhausted. Needing to cough or clear your throat a lot can be from tightened throat and vocal muscles.

Hope you get all the help and advice you need just now to get you well again just now, and also help yourself to keep better health in the future.

All Best 👍

[Cloudancer in reply to Shogi]

That reply helped me no end - thank you x

[peege]

Perhaps ask for your sputum to be analysed not only for the correct antibiotic to treat your particular infection but to see if its one of those ver stubborn bacteria that’s reoccurring. Unfortunately pred and/or antibiotics are the go to treatments for exacerbation.

[Patk1]

My thoughts are to do best to avoid viruses..pity they're not visible! Perhaps a purple mist#! I've severe asthma,bronchiectasis & lot more so I still wear masks,carry handgel everywhere eg touch a door handle,bannister,borrow a pen..wash or antibac hands.there r nose + throat sprays to help neutralise viruses eg vicks first defence.ths damp weather of poor summer + autumn doesn't help x

[LisaLuv3000 in reply to Patk1]

Yeah, if only viruses were visible 😅 I'm a secondary school teacher, so pretty difficult to avoid, but I take your point about being more vigilant.👍