Not sure!

[PteW43]

I've taken various inhalers for copd since diagnosed over 20 years ago. I'm now 75.I have no other health problems.🙏🤞 mobile and don't take any other medication.

I have managed my copd well enough in the years but obviously had the dreaded exacerbations in that time.

In the past few months my respiratory nurse has been trying me on other main inhalers as I had 3 exacerbation in 2022/23 year.

After the first 2 inhaler trials caused me side effects we settled on ANORO last Nov '24.

Keeping busy on the 2nd Jan this yr taking down decorations & lights, boxing & putting away in dungeon (lol cellar) hoovering etc I forgot to take my main inhaler ANORO.

Later that nite when I realised I just took one puff of my Ventolin.

The nx morning up & at it I started to wonder why I was not out of breathe?

So, as a little experiment, day by day, I have not taken my main inhaler for the last 5 days to see how I go?

I have taken my Ventolin, one puff in the morning 2 last thing at nite but otherwise no breathing problems!

I'm shocked but pleased so far but a bit confused, to say the least, as my respiratory nurse, in Dec '24 was ready to put me on a steroid main inhaler!

I choose to try a steroid free inhaler first ANORO.

As I said at the beginning, I've taken a main inhaler for over 20 years.

It maybe, in the nx few days my breathing may become a problem & I'll be straight bk on my main inhaler.

But, I was expecting that to happen on the 2nd day of doing without it.

Any comments welcome please.

Thank you...

[Mellywelly]

Interesting to know how long anoro stays in your system, other than that I'm stumped 🤣🤣 good on you but please be careful

[PteW43 in reply to Mellywelly]

Yes, that would be interesting to find out Mellywelly, will try.I won't mess about if I get any pains in chest, tiredness or problems with my breathing. Thank you.

[PteW43 in reply to PteW43]

Anoro Ellipta is used as a once-daily inhaler as a maintenance treatment for chronic obstructive pulmonary disease (COPD) over the long-term. Anoro is only inhaled once per day because the medication effect lasts for at least 24 hours. Use your Anoro Ellipta inhaler at the same time every day. Anoro, from GlaxoSmithKline, is administered using the Ellipta inhaler.

[PteW43 in reply to PteW43]

Above copied from Internet.

[Mopsey1897]

wow I’m amazed you stopped and it hasn’t affected you (touch wood ) and I’m really pleased for you. I was glad I read your post as I’ve only had COPD and emphysema a year officially but probably a couple of years longer, and you seem very active considering you’ve had it over 20 years. Whatever you’re doing, keep doing it as it works! May your good breathing keep going!

[PteW43 in reply to Mopsey1897]

I'm a bit flabbergasted to be honest Mopsey! I am going to ring for a tel appt 2 moro with my respiratory nurse. But, if I have a hint of breathlessness in nx few hrs I'll be taking the ANORO Inhaler.

Day on day off until I speak with her

I have noticed a reduction in what I've always called the 'froth/cough' clearing!

That's not to say I'm doing the right thing, I'm just not sure, hence my post.

But FOLK 's please DON'T DO

what I'm doing.

It wasn't planned I just forgot to take my main inhaler one day & DID NOT expect to be breathing as easy on 2nd 3rd or 4th day without it.

Probably need it 2 moro & I will take if I need it.

Will keep you updated either way.

Yes, I've always been active, busy bee except for the exacerbations! That's when I coined the term I felt I had a 'froth making' machine in my chest. 😒🤞

[Mopsey1897]

I don’t use an inhaler yet but have one in case I ever need it. You sound very sensible and would obviously go back on the inhaler if needed. Being a busy bee suits your lungs 👍

[PteW43 in reply to Mopsey1897]

Mopsey I had never heard of COPD In 2004/5 when it was mentioned to me but had heard of emphysema.I found out though I needed to stay as active as possible & change my lifestyle..

Since then I've never used a lift I walk up stairs & for a gd few years went to the gym for circuit training.

I'm house proud so like to think that's excerise as well, certainly is when I'm up & down stairs to bedrooms and/or cellar lol..

I have a oxsimeter meter (the device Dr/nurses put on ur finger to measure ur oxygen level & heart rate, handy thing to have in) So I'm going to read at rest then when I'm busy & keep a record over nx 24 hrs.

I don't need my heart rate to be high or my oxygen level below 95 or I'm putting pressure on both.

Thank you for your comments. Take care .

[PW_R in reply to PteW43]

did an exacerbation end your gym routine?

[PteW43 in reply to PW_R]

No the Lockdown did . But, obviously I didn't go to gym if I had an exacerbation. The coughing is the worse thing about a flare up, differcult to control & embarrassing! Pamper myself then lol take my rescue pk & drink plenty water.I volunteer at a Warm Welcome charity now giving dinners out to anyone who has fallen on hard times.

Kept busy & on my toes lol.

[Ern007 in reply to PteW43]

There was no COPD when I was diagnosed it was "COAD" (Cronib Obsructive Airways Disease} - I had and still have emphysema - for some reason COAD became COPD, both one and the same.

[PteW43 in reply to Ern007]

Pulmonary another word I suppose for our Airways Ern both referring to the lungs. Nothing stays the same lol...

[Olivia-Dre-123]

I would be terrified not taking my Trimbo I did forget on new years eve and struggled for breathand chest pain,but u do what u think is best and working for u but be careful x

[PteW43 in reply to Olivia-Dre-123]

Yes, that's exactly how I expected to feel the following morning Olivia, definitely short of breath & to use my ANORO but, I didn't. Confused a little, I thought, I will do but will wait & see, ANORO at the ready.

This today (Tues 7th) is the 5th day without ANORO not the 6th.

I am taking my Ventolin in a morning & last thing at nite. We can take that up to 4 times a day. If I need it during day will take it then too.

But, like I say I need some medical advice & guidance here & will search it out.

At rest & on waking this morn my oxsimeter reading was 95/91. That 91 heart rate will def go up (expected obviously) when I'm up & doing! So watching that.

But my oxygen level at 95 isn't bad considering I've not taken this main inhaler for 5 days...

Will keep taking these readings & listening to my body until I can chat with respiratory nurse.

Thank you for your message.

[Olivia-Dre-123 in reply to PteW43]

I hope it all goes well when u see the respitory nurse, my oxygen was down to 91 early hours and pulse 121 but it's ok now x

[PteW43 in reply to Olivia-Dre-123]

Was those readings while u were resting Olivia?

[Olivia-Dre-123 in reply to PteW43]

Yes, but my pulse is normally up anyway and oxygen is a steady 94 now

[PaperQueen]

I think that's amazing 😀 and would have thought that not taking more medicine than you need must be a good thing. You seem very sensible and I'm glad to note that you are going to see the nurse about it though. Keeping active is so essential, you are obviously doing all the right things to be your best self. xx

[PteW43 in reply to PaperQueen]

Thank you PaperQueen - Yes, it's definitely a good thing to be able to take as little medication as you can but, ONLY IF YOU CAN! To have any kind of life limiting illness or disease medication is a must to keep on going.

I definitely wouldn't hesitate to take heart med, diabetic med etc etc 'IF ' I needed it.

After all I've taken a rescue pk consisting of 5 days Antibiotics & 42 prednisone tablets (6day x 7) ey time I've had an exacerbation.

I'm thinking that perhaps my breathing maybe ok for now but will it continue over the nx few wks?

I have gone on the NHS website this morning & requested a phone call bk from the respiratory team. My request isn't an emergency one so (as we all know) I'll have to wait to hear back. 👍

[PaperQueen in reply to PteW43]

I'm totally with you on that PW. I wouldn't be able to function or even get out of bed without my preventer inhaler. Quality of life is paramount and one always has to consider the long term effects on our health, but still, I would dearly love not to have to take so many drugs. Let us know what the respiratory team say when they get back to you. xx

[Superzob]

Long-acting inhalers can often take weeks to have an effect and, since both components of Anoro are long-acting, it may be that it also takes a long time for the effect to wear off. You may find that you are gradually using more Ventolin and, if and when you go back to Anoro, it could take some time to recover the original effect. Like you say: “don’t try this at home”!

[PteW43 in reply to Superzob]

Hi Superzob - I'm completely baffled! Of course 'if' I don't need a main inhaler that would be absolutely wonderful. 'If' I could manage with just using my Ventolin, as & when, it would be a miracle lol.

I've never been one for taking med unless I really need it. Because I was diagnosed with COPD I learnt to keep myself as fit as I could & limit the progress of this disease.

I've been happily resigned to taking a main inhaler (few changes with Inhalers along the way) for years & years now.

In Feb/Mar 2023 I was having pains in my chest & the Dr put me on Bisoprolol a beta blocker!

I wrote up about this on the Heart Foundation site under my name above.

Cut a long story short + 8/9 months of no life, fatigue etc + complaining to Drs on each visit that this drug wasn't suiting me, I eventually got a link up appt with a Cardiologist online. Outcome of that appt? The Cardiologist didn't think I had Angina

& stopped me that same afternoon taking Bisoprolol. But, to make sure my heart was ok I had to have an Echocardiograph, that came back normal. I also had a 24 heart monitor fitted that came back normal too! A real worrying time for months.

In the end I had an Endoscopy which showed I had Gastritis. This can cause pain in the chest. Months of Bisoprolol & no life.

(Look up 'Do UK doctors make money from

prescriptions?')

My issue is more about, Do I really need the med & will taking it outweigh the problem/pain I'm having & enhance my life?

Looking forward to hearing from resp/team.

Yes, maybe you are right but I've only been trying this new inhaler ANORO since mid Nov '24.

I certainly wouldn't take the Ventolin more than recommended. Today took 2 puffs this morn & one this afternoon (& I've been out with my friend hunting down bargains lol)

Thank you for your input & info 👍

[Ern007]

Maybe the wording is wrong here ( steroid main inhaler) really Steroid Inhaler is a .preventative and your blue inhaler a relievers, sometimes these days called a rescue inhaler.

Maybe the nurse though a steroid inhalers a safer option.

[PteW43 in reply to Ern007]

I understand that ANORO is not a steroid inhaler but that's the one I've been on trial with since Nov '24. My last inhaler was Sea-bri. I think most COPD sufferers know that the blue inhaler Ventolin is a reliever or as I put it to use 'as & when' needed because it works to help shortness of breath straight away.

This subject is not about my terminology of wording or whether a steroid inhaler maybe better for me.

It's about my surprise on realising after 20 odd years of COPD & its effect on my airways/lungs in that time I missed a dose, then a 2nd 3rd 4th etc & I didn't become breathless. I fully expected this to happen.

Waiting for a return call and /or text or message through NHS website from surgery.

[Ern007 in reply to PteW43]

Well good luck. As a norm COPD would be worse after 20 years. Hope you get the test you desire.

[glds100 in reply to PteW43]

I have asthma and I was told by my asthma nurse that ventolin should not be taken regularly only if you are having an attack. The reasoning is that if you have a attack that is bad then the drug they give is Sabutimol which is ventolin but it is given to you through a mask. They found people using ventolin daily were less likely to have a positive out come to the treatment.

[PteW43 in reply to glds100]

Asthma and COPD are usually differentiated (Table 4):Different inflammatory cells

Different inflammatory mediators

Different response to therapy

Your Asthma nurse may have a reason for info given to you re Ventolin inhaler.

Both the above lung diseases differ.

COPD patients can use their Ventolin inhaler, 'if needed'

ie) up to 2 puffs no more than 4 times a day.

A COPD patient suddenly finding it differcult to take a breath absolutely needs their Ventolin inhaler 'as & when' Hence the name Reliever.

[glds100 in reply to PteW43]

This is why I was very clear to point out my condition was Asthma, we also patients can also take Ventolin when we are having difficulties I wouldn't want anyone to think they should not be taking it at all.

[PteW43 in reply to glds100]

It was your paragraph , quote:'They found people using ventolin daily were less likely to have a positive out come to the treatment'

I was addressing this for anyone with COPD as I know a few people that need their Ventolin Reliever every day.

[jackdup]

That is great you are doing so well without your normal inhaler. Do you know what stage your COPD is? When was your last spirometry or pulmonary function test?

[PteW43 in reply to jackdup]

Well up to now 🤞 but I need to find out jackdup if I should continue without it?Am I likely to get an exacerbation more easily without this main inhaler?

Mind you I got them with Inhalers lol...

Think I'm on about day 7 without the ANORO. I've noticed my heart rate up at times but certainly goes bk to 92 or less with rest.

If it stayed up at rest I'd be taking my Anoro again.

Right this min my oxsimeter reading is 95/ 88 which is excellent considering.

I have used my Ventolin this morning on waking & 1 puff earlier.

I understood I had moderate copd. I had a Spirometry test over a yr ago & it's certainly a while since I had PF test.

I've made my request on the NHS website for a respiratory nurse call back appt. Just have to wait.

I am going to request a PF test.

I'm just so baffled why I'm not gasping for breath at this stage, without this main inhaler they say I should (& have been) taking?

I could be doing myself more harm than gd. I don't know!

I was definitely diagnosed all those years ago with COPD

I've known ey one of those exacerbations through those years.

It's certainly doesn't go away!

Definitely PF test needed.

Thank you.

[PteW43]

UPDATE: After my request on the NHS site for a tel appt call back from 'my named' respiratory nurse, this morning Fri 10/01/25 I received a call from a pharmacist!I explained my query, again, (as I had on the form then to be told 'best you speak with the nurse dealing with your inhaler'. Now waiting for another call back! 🤞