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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Any help advice for COPD

20 replies

CheeryFish · 23/04/2025 15:17

Hi I was diagnosed with COPD in 2018, eventually I was put on anora inhaler then recovery one as well that I have managed ok with since last year. i have started getting flare ups last one in December and one now. I saw the COPD nurse a couple of weeks ago who I have a yearly check up with - she seems now as if she goes through the motions of just asking basic questions and doesn't really answer any of mine. I asked her how I would know if if my stage had progressed from moderate ..her reply was we don't do them tests now....when I asked how do I know what stage I was at ...she replied good question...and that was it. Too try and cut a long story short for now the last couple of nights I have had really bad coughing fits and felt I was going to stop breathing I dont panic and keep calm but was on verge of calling abulance as my inhaler was useless [recovery blue one] I could breath it in. I am feeling ok now and eventually last night it passed ..but it has worried me apparently I see online u have to prepare for flare ps ..but how I have been looking at nebulizers but dont want to go on it for the sake of it if it isnt prescibed by doctor. would really appreciate any advice and hope post isnt to confusing.

OP posts:
Perkuppaige · 23/04/2025 15:21

I dont have COPD but do have interstitial lung disease. If I was you I would make an appointment with your GP and let them know that your symptoms are no longer being managed with the inhalers - sounds like you need a review and maybe some lung function tests to see if there’s been some progression.

Sorry you’re going through this - I know how frightening it feels late at night when you have trouble with your breathing.

Original poster
CheeryFish · 23/04/2025 15:38

Perkuppaige · 23/04/2025 15:21

I dont have COPD but do have interstitial lung disease. If I was you I would make an appointment with your GP and let them know that your symptoms are no longer being managed with the inhalers - sounds like you need a review and maybe some lung function tests to see if there’s been some progression.

Sorry you’re going through this - I know how frightening it feels late at night when you have trouble with your breathing.

Thank you, I am going to get in touch with Doctor this morning all appointment were full but will still keep trying - its just some times I have found its best to take your health in your own hands and some times better to talk to some one who goes through same for advice.

OP posts:
BasilParsley · 23/04/2025 15:46

Do you have a rescue pack of steroids and antibiotics? If you have, start taking them straight away. It could be you are having an exacerbation and need the extra meds to cure the infection. If you don't have a rescue pack, phone your GP as a matter of urgency and ask them to prescribe you one.

Hope you feel better soon.

DemonsandMosquitoes · 23/04/2025 15:57

If you’re having flare ups you may be better with an inhaler that contains a steroid too, ask about Trelegy Ellipta instead of Anoro.
Have you got a spacer for the blue inhaler? If not, ask for one.
Have you had a recent chest X-ray? Blood test to check eosinophil level?Sputum sample?
A referral to respiratory may be the next step.
The breathing tests are not done routinely post diagnosis now. Management is guided largely by symptoms.
Seek an urgent review from your practice anyway.

Original poster
CheeryFish · 23/04/2025 16:14

BasilParsley · 23/04/2025 15:46

Do you have a rescue pack of steroids and antibiotics? If you have, start taking them straight away. It could be you are having an exacerbation and need the extra meds to cure the infection. If you don't have a rescue pack, phone your GP as a matter of urgency and ask them to prescribe you one.

Hope you feel better soon.

No I don't - this is what I mean I am never given any advice on what to do the nurse just seems to wiz through with a blood test weight and height. when I told her about the one in December she just said it is the cold weather that effects it more. Thank you for your good advice.

OP posts:
Original poster
CheeryFish · 23/04/2025 16:22

DemonsandMosquitoes · 23/04/2025 15:57

If you’re having flare ups you may be better with an inhaler that contains a steroid too, ask about Trelegy Ellipta instead of Anoro.
Have you got a spacer for the blue inhaler? If not, ask for one.
Have you had a recent chest X-ray? Blood test to check eosinophil level?Sputum sample?
A referral to respiratory may be the next step.
The breathing tests are not done routinely post diagnosis now. Management is guided largely by symptoms.
Seek an urgent review from your practice anyway.

I don't have a spacer No....It was a bad one I had in December and she just blamed the weather, I have asked about a newer inhaler and she told me Anoro was the best one. Its like at the moment my chest is really tight and everything I do is an effort and short of breath. thank you for your good advice the replys I have received are a comfort on there are other medications

OP posts:
BasilParsley · 23/04/2025 16:29

If your chest is really tight and you are short of breath, you really need to be seen as soon as possible and get the steroids and antibiotics in you.

I have a repeat prescription for Doxycycline (antib) and Prednisolone (steroid) and always have a pack of each at home. As soon as I start to get a bit tight chested and coughing more, I crack the packs open straight away and then order replacements. Saves having to wait a couple of days for a doctor's appointment.

Topseyt123 · 23/04/2025 16:31

I don't have COPD but my mother does.

I think you should definitely push for an urgent appointment with your GP. You might have a chest infection which could be exacerbating things and might need antibiotics and/or steroids to get on top of it.

You should also ask whether or not the inhalers you have are still the best ones. My mother is at a fairly advanced stage I think, although I don't think she has seen the COPD nurse in a while. She has an inhaler called Trimbow (a grey one with a red lid on the mouthpiece) which she has to use twice daily, so morning and evening, and also the blue one to use for the rest of the day as needed. She also has a rescue pack which contains an antibiotic (Doxycycline, I think) and a steroid for if she should start to get an infection etc.

Ask about these when you get your appointment.

Solacesolipse · 23/04/2025 16:40

Have you ever seen a physio and/ or been referred to pulmonary rehab? There’s a lot more to managing COPD than just inhalers. Are you a current smoker/ vaper or ex smoker? It’s a common time of year to get flare ups but you sound as if you need a proper review of your management.

DemonsandMosquitoes · 23/04/2025 17:15

Anoro isn’t necessarily the best one, it has no steroid in it which you might need.
Bypass the nurse and go higher.
Get a spacer off Amazon if you must and use your reliever through that.

Original poster
CheeryFish · 23/04/2025 17:43

BasilParsley · 23/04/2025 16:29

If your chest is really tight and you are short of breath, you really need to be seen as soon as possible and get the steroids and antibiotics in you.

I have a repeat prescription for Doxycycline (antib) and Prednisolone (steroid) and always have a pack of each at home. As soon as I start to get a bit tight chested and coughing more, I crack the packs open straight away and then order replacements. Saves having to wait a couple of days for a doctor's appointment.

Thank you, I will be on to the surgery tomorrow if I cant get appointment. I will tell them its urgent The trouble is as well in my mind I think I don't want to go on things if I don't have to and get dependable on them ....Which is obviously after reading replies a silly decision to take

OP posts:
Original poster
CheeryFish · 23/04/2025 17:45

Solacesolipse · 23/04/2025 16:40

Have you ever seen a physio and/ or been referred to pulmonary rehab? There’s a lot more to managing COPD than just inhalers. Are you a current smoker/ vaper or ex smoker? It’s a common time of year to get flare ups but you sound as if you need a proper review of your management.

ex smoker....I am so glad I came on here as the info I have seen should have been given to me by the nurse only a couple of week ago...I have been offered nothing apart from inhalers.

OP posts:
Original poster
CheeryFish · 23/04/2025 17:48

DemonsandMosquitoes · 23/04/2025 17:15

Anoro isn’t necessarily the best one, it has no steroid in it which you might need.
Bypass the nurse and go higher.
Get a spacer off Amazon if you must and use your reliever through that.

Thank you that is exactly what I am going to do have already ordered spacer.

OP posts:
Pixiedust1234 · 23/04/2025 18:09

I'm in a similar position to you OP.

My annual review is a checkbox list over text and no follow-up even when I say I am worse. I definitely don't have a rescue pack on repeat so I have to ask every time, but only after an appointment 🙄

However I am on Spiriva-Respimat which have given me the best results. I can't remember the other four I tried but I needed the blue inhaler a lot with them and now I rarely need it. Worth experimenting to find the best one for you.

Original poster
CheeryFish · 24/04/2025 10:16

Yes exactly its a tick box list - then how much you weight and how tall you are. I don't really think they are qualified [no disrespect to her] in a specific ailment and see a variety of patient with different ailments...I should have thought when I asked her how would I know what stage Im at ...and she replied good question but never answered it. I really must though take most of the blame myself by thinking it was all part and parcel of COPD [the flare ups] and not seeking further medical advice thinking that's what happens with COPD.

Thank you....and every one who have replied I am so glad I came on here it has really helped and give me hope that I don't have to just suffer these attacks there is other help that can it seems really improve my quality of life. I have an appointment with doctor for 1. 30. pm today and can now go with the information in my mind that I have received from everyone who have replied. Again thank you all so much yesterday I felt doomed...Today I have hope. xxxx

OP posts:
Original poster
CheeryFish · 24/04/2025 10:24

Topseyt123 · 23/04/2025 16:31

I don't have COPD but my mother does.

I think you should definitely push for an urgent appointment with your GP. You might have a chest infection which could be exacerbating things and might need antibiotics and/or steroids to get on top of it.

You should also ask whether or not the inhalers you have are still the best ones. My mother is at a fairly advanced stage I think, although I don't think she has seen the COPD nurse in a while. She has an inhaler called Trimbow (a grey one with a red lid on the mouthpiece) which she has to use twice daily, so morning and evening, and also the blue one to use for the rest of the day as needed. She also has a rescue pack which contains an antibiotic (Doxycycline, I think) and a steroid for if she should start to get an infection etc.

Ask about these when you get your appointment.

I have an appointment today 1.30. thanks to all the help from here. Maybe to late to ask as you replied yesterday ...but what sort of quality of life does your Mother have because at the moment I feel totally confined to the house with breathing coughing.. ect as I always do when these attacks happen an my inhalers are useless as I cant breath them in I am really hoping for a bit of better life at the end of the tunnel

OP posts:
BasilParsley · 24/04/2025 19:32

How did you get on this afternoon with your appointment @CheeryFish I've been thinking of you ....

doitwithlove · 25/04/2025 10:30

F ..

Original poster
CheeryFish · 25/04/2025 11:25

BasilParsley · 24/04/2025 19:32

How did you get on this afternoon with your appointment @CheeryFish I've been thinking of you ....

Aww thank you BasilParsley. Hopefully it was a success. I don't think I would have got anywhere if I hadn't got the knowledge and the advice on here from u all [really grateful] the doctor was really understanding and listened [female] but at one point was told inhalers are sufficient and to not hesitate next time to ring 999.

I then mentioned the rescue pack to avoid getting to the stage were I would have to ring 999. I told her I had been looking on NHS web page [thought it best not to mention mums net].She eventually prescribed PREDNISOLONE apparently a steroid as a rescue pack - this would now be loaded up on my file as my first flare up but when I start to feel my chest tightening I will be able to get repeat prescription.

It is strange how there is things out there to help - but for some reason avoid giving them to you because the thing is I told her I dont want to make out that I am worse than what I am ...but on the other hand if there is things that can help me through the attacks I would like to try them,.... so will now have to see how they work have to take 6 a day for 5 days although feeling more back to normal now still need to take them. What I do know though - I would not have them if I hadnt come on here for help. x

OP posts:
Perkuppaige · 25/04/2025 17:41

That’s really good news, I’m glad your GP was so helpful and hopefully you’ll start feeling the benefit soon.

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