Hi
I am new to this forum and just need a little bit of support. I was diagnosed with COPD last November and was put on Trilegy and Salbutamol. However, last week I attended the clinic and the nurse there said she doesn’t think I have COPD but Bronchiectasis/ emphysema. Has anyone else got this and what medication do you take to relieve the symptoms?
If the nurse thinks that you have bronchiectasis you should be referred to a bronch specialist for proper diagnosis and ongoing treatment and support in self management. This is far more complex than the relatively simple drugs and inhalers used by those with copd. Bronch is totally different to copd. GPs and nurses cannot diagnose it and they know virtually nothing about its management.. The only way to diagnose bronch is by ct scan, interpreted by a bronch expert. They also advise the GP which drugs (antibiotics mainly) to give to the patient according to what is happening at the time and their physios teach the patient how to clear their lungs. Look for a bronch expert in your area. They are usually at large teaching hospitals. Take the name to your GP and insist on a referral. Don't take no for an answer.
Thank you Littlepom, I am waiting for a CT scan and further blood tests. Once I have had these I am going to be referred to Pulmonary Rehab. Thanks for your advice, it is much appreciated.
Emphysema is copd,along with chronic bronchitis. A ct scan will confirm diagnoses.hope yr inhalers r helping.welcome to the forum x
Dear Poppywalk, I am not convinced any nurse can diagnose you accurately without you having a CT scan or xray and seeing a respiratory consultant. However if you have already been put on Trelegy the nurse must have considered your lungs to be quite bad as Trelegy has three medicines including steroids. I didn’t get put on Trilegy Ellipta until I had COPD for several years and my breathing had become much worse (that was prior to doing a pulmonary rehabilitation course which is extremely beneficial). I wonder if it might be wise for you to request to see a respiratory consultant. My GP was reluctant to refer me so I went private and the consultant couldn’t understand why my GP hadn’t referred me and immediately transferred me to a lovely NHS consultant.
yes i have Bronchiectasis its been 10 yrs now & i take azithromycin every day ( i stared off on 3 days) i take Carbocisteine & have 3 different inhalers, blue, pink & a round disk which help i also do physio every morning & night 15 mins each time to help clear mucus. I have a puffer as well its a bit like a pipe with a heavy metal ball inside which helps with mucus. I also do breathing exercises. Hope this helps x
Hi Poppywalk and welcome to the site. I cant add anything to LP's advice except make sure its a bronch specialist you get referred to as respiratory consultants are not the same. Good luck x
Hi and welcome to this friendly, funny and informative forum. I agree with Littlepom et al. Only a scan can diagnose bronchiectasis. It does not come under the umbrella of copd though, like me, you can have copd AND bronchiectasis. Emphysema DOES come under the umbrella term of copd as does chronic bronchitis. I hope the scan can give you a definitive diagnosis and the appropriate treatment. I definitely recommend pulmonary rehab whatever lung condition you are diagnosed with .
I think you may have misunderstood - COPD is Chronic Obstructive Pulmonary Disease and includes emphysema, chronic bronchitis and asthma and few more rare diseases. Bronchiectasis is not included as it is largely confined to the bronchus rather than the pulmonary airways. That does not make it any less serious.
As Littlepon says bronch is very different and diagnosis is complex. I should ask to be referred to a specialist.
I note you are being referred to Pulmonary Rehab - this is excellent.
There is a clue to bronch and that is your mucus - do you find it easy to bring it up and out of your lungs? And is it frequently infected? Both these will help a specialist decide on your need for a CT scan.
Welcome to the forum, Poppywalk. I have bronchiectasis and have been prescribed Relvar Ellipta inhaler once daily, Carbocisteine 4 pills daily, Azithromycin 3 times a week and Ventolin for emergencies. They keep me pretty stable most of the time. Good luck.
Hello and a warm welcome to the forum. You will find great advice and support from our members, and don't forget, if you are in the UK, you can call and chat with us for advice on your lung condition. 0300 222 5800 Mon- Fri 9am-5pm
Hi Poppy walk I too have been diagnosed many years ago with bronchiectasis and emphysema, I am on lifelong antibiotics and I have to take carbocisteine capsules 375mg two three times a day
I had been treated for copd for a long time but no treatment produced relief.Some weeks ago a new consultant advised me that my problem was not copd but bronchiectasis.
My new GP, a man of the old school, advised me not to over think the problem.
He said 'put 3 clinicians in a room and they will produce 6 copd answers'. (stolen from economics)
In short what suits one does not suit another.
My solution... Try the meds but if they don't suit, try something else and stamp your feet until someone changes it.
I have found this group is so friendly and give lots of advice The support groups and zoom monthly look fantastic -as yet I have not had time to access The helpline are friendly too
Do try to get as much information to then decide what might work for you ?
Good luck Mary
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