Trelegy Ellipta

[Blackcat99]

Have others had experience of this inhaler? I’m coming up 79, have a dry form of bronchiectasis (no mucus) which has generally been under control for decades. However, have never found that inhalers did anything for me.

Due to recent deterioration in breathing, have been prescribed Trelegy Ellipta inhaler, which I think is more commonly used for COPD, but also for bronchx . Just wondering about others’ experience of this? I ask because, after first four days, I think there’s been an actual improvement 🥳 but wonder if I’m just imagining this?

[leo60]

Hi Blackcat, I have severe COPD and was on Trelegy for 2 - 3 years. It served me very well and I had no problems with it. I can't actually remember why I changed!

If you feel it's helping, that's brilliant news! Long may it continue 😊😊 xx

[Blackcat99 in reply to leo60]

I know! Just hoping the improvement isn’t just my imagination 😉. Best wishes !

[Blackcat99 in reply to leo60]

Thank you!!!

[Issy22]

Hi Blackcat 99 I have been using trelegy inhaler for about 2 months now. I have copd and bronchiectasis and I have found my breathing is starting to get a lot better. I sometimes get a burning sensation in my throat but it soon goes. It’s the best inhaler I have used so far. I hope it continues to improve your breathing.

Issy x

[Blackcat99 in reply to Issy22]

Thanks, Issy -and you too! These are encouraging replies from Leo60 and yourself 😁

[Kiwiflyer8]

Your inhaler sounds interesting Blackcat. It’s the same one that my daughter uses ( these horrible lung diseases run in our family 😩) and she reckons that it helps her.

Incidentally, my bronchiectasis is the dry type too I’ve been told, but when I get a flare up, (as I have now) I do get a ‘rattling chest’ which I can’t cough up despite using an Aerobika and all the techniques I’ve been taught.

I hope that you continue to improve.

[Blackcat99 in reply to Kiwiflyer8]

Yes, I also have never had much success with the coughing up, despite everything. I did once find carbosisteine helped a bit during a really nasty chest infection, could actually get rid of a smallish amount of 'stuff'. As a teenager (60+ years ago) I had TB for several years, and never produced anything then either. They used to do a gastric lavage every month, to get samples for testing! I'm pretty sure that it's just a case of atypical symptoms.

My exacerbations have been so much less since Covid - not sure if it's anything to do with all the vaccinations, or if having a long period with limited social contact (plus much-increased awareness of public hygiene) gave my lungs the time to really improve themselves? So sorry that you're in the middle of one right now, and hope it subsides very quickly. Take care! Jay

[Kiwiflyer8 in reply to Blackcat99]

Hi Jay

Thank you for your message. I was put on carbosisteine by my GP … and taken off it by the respiratory consultant!! I had a couple of packs still so started taking it again.

After telling my medical practice by email that I’m unwell, I’ve just received a phone call with an appointment today!!

That’s good news to hear that your flare ups are fewer now. May it continue.

Thank you for the get well wishes 🤗

[MoyB]

When I changed to Trelegy, my pf rose from 180-200 to 230-280. I have asthma with fixed airways and bronchiectasis. I used to have masses of phlegm with it but since taking carbosisteine three times a day it is mostly dry. The trelegy certainly suits me better than previous inhalers and I only have to take this one in the morning instead of two inhalers morning and night.

Long may you enjoy the improvement you're getting.

XxMoy

[Blackcat99 in reply to MoyB]

Thank you, Moy! I don't produce sputum, never have done, but have just found breathing closing in on me over the last year or so, so very glad to found something that helps at all! Trelegy is certainly relatively straightforward to take, so I hope that it continues to help you too. Jay x

[Alberta56]

The surgery asthma nurse put me on Trelegy, but the respiratory physiotherapist promptly took me off it when I went for Pulmonary Rehab. She said it was good for asthma, but not for bronchiectasis. Apparently it dries up the phlegm instead of loosening it. I think you need to talk to someone with expertise- not me.

[Blackcat99 in reply to Alberta56]

It was the consultant who put me onto the Trelegy, as I've never previously found any inhaler helped in any way. I have a dry form of Bronchiectasis, have never produced any sputum at all, except during a really bad chest infection.

I've now come across a helpful medical website (and have now mislaid the URL 🙄) -seems that what I have is a different form of the drug which has now been developed for bronchx. Different proportions of constituents. Hopefully, this might be a real step forward for some of us. Good luck!

[Alberta56 in reply to Blackcat99]

I'm glad it's working for you. Sounds hopeful that they are now producing treatments for bronc, which are not just treatments originally aimed at asthma and COPD.

[Blackcat99 in reply to Alberta56]

Yes - My thoughts too!

[Bingo88]

Good morning Blackcat99. I have been on Trelegy for just over 3 years now for Severe copd and Asthma and have found its very good at helping me. But I think I need a review of my medication now because of becoming a bit more breathless. Brian

[Blackcat99 in reply to Bingo88]

Yes, that sort of thing does tend to happen after a while, doesn't it? Hope you get a meds review soon, Brian, and maybe a slight update to your prescription if necessary. Good luck! Jay

[JulyAugust]

I’ve been on Trelegy Ellepta for some time. You need to rinse mouth out with water and gargle after inhaling as it has steroids in it which are bad for your throat / mouth. It does seem to be good though

[Blackcat99 in reply to JulyAugust]

I already have an increasing issue with a hoarse throat, especially when trying to project more clearly - e.g. on 'phone or in a group of people. Can be uncomfortable and quite embarrassing, so hoping the Trelegy doesn't make it any worse 🤞 Am rinsing and gargling religiously! Jay

[JulyAugust in reply to Blackcat99]

Yes me too…it’s embarrassing on work calls. Sometimes my voice completely seizes up. I’ve asked to go back to my previous medication but my doctor isn’t keen. It’s a shame as I had a young sounding feminine voice over the phone three years ago and now I sound like I’m smoking 40 a day!

[Blackcat99 in reply to JulyAugust]

Oh, yes!! Me too - really embarrassing, isn’t it? And ends up feeling quite sore too if you have to keep it up for any length of time. Have had this problem for years, pre- Trekegy, so just praying that Trelegy doesn’t make that any worse. Wonder if there’s any sort of mouthwash/gargle which might work better that the plain tap water? Best wishes!

[notthemamma]

Have used it for years for COPD. Best one I've ever used. Wish you well.

[Blackcat99 in reply to notthemamma]

Thank you - best wishes to you too!