exacerbation here we go again - Lung Conditions C...

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exacerbation here we go again

Jake25 profile image
13 Replies

Started to feel breathless over a week ago when walking on the flat, which was slowly getting worse,then sinuses started, mucus draining on to my chest.so started rescue pack. I'm disappointed as started on Trimbow last April, was told I may not have as many exaecrbations as before. But not even six months and they are back😭. Here comes autumn.... ☔

Ps writing this has taken ages as letters keep getting jumbled... What's going on?

13 Replies

Go back to your GP explain everything you can and explain its causing you distress they need to do more to help you but make sure you explain everything. I know the difficulty in breathing and the problems with walking around , I have small cell lung c end stage and fought for three and a half years for help and support and got nothing until too late . Your in control of this just explain everything to your GP or pulmonary specialist. Sending you gentle hugs 🤗🤗🤗 take care were all here to support each other.

Jake25 profile image
Jake25 in reply to

Aww thanks Davey will definitely contact the surgery.. You take care 😊

in reply to Jake25

And you 😁

johnderby profile image
johnderby

Hi Jake. I changed to Trimbow over three years ago and was experiencing 5/6 exacerbations a year. It is now a max of two. I hope that long term it proves to be helpful to you too. All the best John

Jake25 profile image
Jake25 in reply to johnderby

Thanks John that info makes me feel much better 😊

Izb1 profile image
Izb1

Just a point of interest Jake25, have you done a covid test? With you saying things are getting jumbled it made me wonder. Hope you get better soon x

Jake25 profile image
Jake25 in reply to Izb1

Hi izb1... Yes done test negative... I meant the letters on here when trying to write they kept getting jumbled up so took me ages to write. Ha ha 😂

O2Trees profile image
O2Trees

Hi Jake, I dont know what your condition is or how advanced it is, but lots of us with advanced conditions, especially but not just bronchiectasis are prescribed with the antibiotic azithromycin 250mg, one tablet 3 days a week, on an ongoing basis.

I have severe copd (late stage 3) and moderate bronchiectasis and Ive taken azithromycin since 2018 and hardly had an exacerbation since then. It might be worth mentioning this to your GP. I hope you get sorted.

Jake25 profile image
Jake25 in reply to O2Trees

Hi O2 trees I have moderate copd. I'm just registered under the GP. I was having 3 or 4 exacerbations a year, was advised to take my rescue pack with onset. Then had review last April after bad exacerbation and was prescribed Trimbow, the copd nurse said my exacerbations should lesson. But as I stated..... I started to feel overly breathless about a week ago then sinus headache, I could feel the mucus going down my throat at night so I knew what was coming. Last time at the GP I asked if I could have ventolin to nebulize just to assist with getting the phlegm up, for emergencies not a regular prescription, but they said no 😩 said I would have to be refered to the respitory team, but they feel I don't need to be at this time. All I want is to manage my own illness the best I can to keep me mobile and able to work, I do not want to go to hospital when having an exacerbation and I don't want to give up working and go on benefits. In general I don't have a cough or phlegm... What they want to offer me is carbocistein, but this takes a few weeks to work, I won't have phlegm by then. 🙄 It's frustrating when you feel they don't listen, they think they know what's best for you. I've asked questions regarding copd and some of the GPs can't answer as they don't know. 🙈

Patk1 profile image
Patk1 in reply to Jake25

There r gd techniques to learn to get mucous up.on ALUK read up on huffing technique,postural drainage,active cycle of breathing.theres also info on COPD.

O2Trees profile image
O2Trees in reply to Jake25

Ok, some thoughts:

First it often takes some time to find the right inhaler for individual patients. I use another inhaler with steroids in it, Symbicort. I've had it for years and it works well. Dont put up with one that doesnt seem to be working.

Then carbocysteine - not sure why you are resistant to trying it. I didnt realise it takes a while to work, but it's excellent for some people (sadly not myself!). Surely it would be worth a try?

Another possibility - since your GP doesnt have all the answers, ask if there is a respiratory GPSI (= GP with Special Interest in a particular clinical area) in the practice, and if so ask for an appointment with that GP.

Also I think if I were you I would be wanting a referral to the respiratory team. Take someone with you to your GP appointments if you can for back up, and ask to be referred - you could say that you need answers that he doesnt seem able to provide. You could initially ask for a one off referral, then when you get there ask if they will continue to see you.

Good luck :)

Dillydream45 profile image
Dillydream45

I too take azithromycin and have not had an exacetbation since I started taking it last October. My doctor told me he couldn't prescribe it a Consultant had to. A consultant prescribe it for me after I had been in hospital with a very bad lung infection. Good luck I hope you get it.

O2Trees profile image
O2Trees in reply to Dillydream45

That's when I got it Dillydream45. After two serious hospitalisations in the same year, they said I might not survive another, hence the azithromycin.

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