Update breathlessness

[Jake25]

I'm still suffering from really bad breathlessness some days worse than others. I did notice that I wasn't as breathless in the good weather last week. I can only conclude that the weather is the cause of my varying breathlessness I have Copd/ asthma.I was on trimbow 87/5/9 for about 18 months but have struggled most of that time and not to mention getting the flu at the end of December that really put me back.

In January my inhaler was changed to the higher dose Trimbow which seemed to do nothing, and i was put back on the lower dose.

I have had blood test to check heart liver and kidneys came back normal.

Was called back to the surgery to see a pharmacist and she has prescribed Trixeo which I get next week.

I really want this inhaler to work, only thing is from what I've read about it... It does not mention asthma.

Has anyone been prescribed this for asthma / copd and if so how are you getting on with it.

Grateful for any replies. ☺️

[janedivney]

I’m not on trixeo but don’t worry that it doesn’t mention asthma. I started spiriva several years before it was recommended for asthma, but it proved to be godsend. Hope the trixeo works for you 🤞

[Jake25 in reply to janedivney]

Aww thank you Jane.These past couple of years have just been such a struggle.

I'm so hoping that this Trixeo works for me.

Thanks for your reply 😊

[janedivney in reply to Jake25]

I hope so too. If it doesn’t, insist on a referral. Being very breathless is a horrible way to live. The weather is one of my triggers too. Once I was maxxed out on asthma meds, I was offered biologics. I won’t say they’ve completely sorted my multiple lung problems but they’re great for asthma 😊

[Lynnetp]

Hi Jane,

I definitely find the weather to be a major factor in how I will feel…..irritatingly. Spring and Autumn are my favourite, with ambient temperatures that are kinder to our lungs.

I tried Trixeo. I was prescribed it during a really bad exacerbation when I had masses of excess fluid in my lungs that I couldn’t get rid of. I used it for 48 hours. It’s a super fine mist that should reach every corner. I think it did help reach areas in my lungs that my previous inhaler couldn’t, because within a day or two my symptoms began to ease.

Having said that; I didn’t feel any relief whilst using it and had to resort back to my Symbicort inhaler. So, a mixed review from me…sorry!

I’d definitely give it a go (with your spacer!) with a positive heart, because although it wasn’t for me, I could tell it was a good one.

Hope you get relief soon

Love Lynne 🥰xxx

[Jake25 in reply to Lynnetp]

Aww thanks LynneI am feeling positive fingers crossed that this is the one.

Thanks for your feed back. I know we are all different and not everything works the same for everyone.

So lovely to hear from you I hope your doing well.

I too can't wait for the spring last week we had the warmer weather and I felt so good.

Will keep you updated.

Take care Lynne ❤️

[Izb1]

I know just how you feel Jake25, since being diagnosed with overlap asthma I have been on a merry go round to find a suitable inhaler. For me the problem I think, is that asthma inhalers open up the airways, whereas the condition Bronchiectasis your airways are already open, so not sure if this is what makes me cough. I spoke with the respiratory nurse yesterday and she is taking me of Qvar and putting me onto Ellipta. I hope your inhaler works for you and you get some relief x

[Jake25 in reply to Izb1]

Aww lbz1Hope we both find relief at some point.

It's really depressing at times, I know that the doctors and nurses try their best to help, but they don't fully understand your struggle. Not everybody is the same all our lung conditions are different not one thing works the same for everyone.

That's what I don't think they understand.

For example they tried me on Trelegy inhaler this was having an effect on my bladder, I kept getting desperate to go wee.

When I mentioned this to the doctor he laughed saying he's never heard such a thing, and yet it's there on the side effects.

Makes me angry they make you feel like your wasting their time.

Anyway looking forward to the spring.

Best wishes to you, thanks for the reply 😊

[Izb1]

That's a thing I will have to look into, as I am in touch with the bladder nurse re getting up so many times in the night, I never thought the inhalers could cause this, thanks for the info x

[Choupy]

Hello Jake25,

I haven't been prescribed Trixeo, but, as a patient with asthma, I can confirm that taking a corticosteroid is essential for this condition.

Are you sure your that your doctor hasn't also prescribed a corticosteroid, either orally or via inhalation?

If he/she hasn't done so, I think you should contact him/her promptly and ask if they may have forgotten to prescribe such a medication. That's very important.

Take care.

Choupy

[Jake25 in reply to Choupy]

Hi ChoupyThanks for your reply.

No they haven't prescribed anything else just the Trixeo.

Yes I will contact them and see what they say.

Thanks for the advice. 😊

[Patk1 in reply to Jake25]

I've just read up snd trixeo contains a steroid( budesonide) and 2 broncho dilaters.hope it helps you

[islande]

Jake I'm really sorry your suffering like this nobody can understand what it's like to be breathless all day unless they've lived it I have fortunately I'm now on right meds.the dr had no right to laugh at you either obviously you need another med that will work are you under a respiratory specialist if not insist your referred I really hope your prescribed right inhaler

I don't really know about steroids except when I get a chest infection but are they an option prednisolone I don't now any more information best wishesxx

[AsthmaandLung Administrator]

Hi Jake25

Thank you for your post.

You are very welcome to call our helpline if you wish, our Clinical Team may be able to help answer your questions about this medication.

asthmaandlung.org.uk/helpline

Kind regards

Helpline Team