Hi all. Basically I have been shown to have emphysema after a ct scan for a heart op. I already have a steroid inhaler and rescue inhaler given to me by my gp surgery for the last 3 years or so. What I want to know is can an asthma nurse be sure I have any asthma? I believe the reversibility test also works on copd so that wouldn't be a way. I want to know because I would like to come off the steroid inhaler if I don't have any asthma. I'm also worried that I'll end up with a poorly informed asthma nurse who will give me her own judgement instead of what might be fact. I have never been tested for asthma or copd. My GP's just says oh well you've stopped smoking you'll be fine. I have never had any exacerbations at all just some restriction in my throat rather than chest but one puff of ventolin and I could exercise to my hearts content. I tend to use the ventolin 1 puff 3 times a day which I believe is the initial treatment for copd. Any advice on how to be sure of asthma would be appreciated.
I have emphysema but was treated for ... - British Lung Foun...
British Lung Foundation
I have both and the copd was detected by X-ray and a spirometer . Might be worth asking for a lung function test? By the way ventolin 3x a day seems a lot to me as I never need mine due to the steroid Inhaler.
Hi thanks. That's kind of my point. From researching copd lately I found that NICE recommend no steroids on a daily basis for copd unless your copd is also mixed with asthma. Steroids should be for exacerbations or for copd in late stages. Otherwise they are saying it can raise the chance of contracting pneumonia. Doctors either don't have the time or the will to go into it that deeply with everyone so everyone with COPD generally are given a steroid inhaler.
Just google: GP's set to take half a million COPD sufferers off steroid inhalers.
You should get a site come up from " Pulse today" it's a magazine for GP's only. I can't put it in for you as a link because it will ask you to sign in. But if you google this yourself you can read it. Have a look at the bottom part for the doctors remarks, it's quite an eye opener. " don't have the time to do this while the patient sits there with his lambert and butlers in his pocket" worth a read.
Some reading for you.
Hi asthma is usually considered reversible with meds. Copd isn't. This is one of the major differences. If you haven't had a spirometry test yet then I would ask for it. That is unless you have had a CT scan which will also pick up copd and emphysema. x
Hi yes thanks. As stated in the post it was picked up in the ct scan. I also had a full lung function test and X-rays before the op. They were apparently fine. But they were before a heart op nothing to do with copd. They never even raised their findings on the scan with my gp surgery. Just sent it across in my medical notes. I found it a year later when browsing them.
Hi gazza01, I was treated for asthma for years by my doctor, it wasnt until she left and I went for a ct scan that I found I had bronchiectasis and later was told by the hospital that I dont have asthma. I wonder if using the blue/brown inhalers can damage your lungs if you dont need them ?? x
I really relate to your post.
It’s the uncertainty with our chronic illnesses that is the worst, I think.
Good luck with getting right to the bottom of the problem.
It is becoming obvious to me many GP's are not taking lung disease seriously! I checked with the NICE website, because my GP claims my Emphysema is COPD, its isn't! NICE say "There is no single diagnostic test for COPD. Making a diagnosis relies on clinical judgement (an educated guess?) based on a combination of history (smoking etc?) physical examination (sputum?) and confirmation of the presence of airflow obstruction using spirometry". In my case I have seen my Emphysema (and Pulmonary Fibrosis) on a CT Scan, so I do have a defined diagnosis! In which case I do not have COPD as my GP insists! Because my GP concealed this diagnosis from me, which I discovered by accident, and complained, he is trying to get me de-registered from the practice, Duuurh! So, if anyone has a defined diagnosed, confirmed by a CT Scan, Lung Function, sputum tests etc, the you do not have COPD, because COPD does not have a clinical diagnosis, only an educated guess!
Chronic obstructive pulmonary disease (COPD) is a common lung disease. Having COPD makes it hard to breathe.
There are two main forms of COPD:
Chronic bronchitis, which involves a long-term cough with mucus Emphysema, which involves damage to the lungs over time
Most people with COPD have a combination of both conditions.
Couldn't have put it better myself! x
Thanks hypercat54. There seems to be a lot of confusion about COPD and I thought I would try to clarify. COPD in itself is not an illness it is a term that covers emphysema and chronic bronchitis. They are the illnesses or disabilities. Sorry i am repeating myself. Off the soapbox now. Lol
I totally agree with you but at my last review my respiratory nurse said you can have emphysema without having copd and vice versa! Now I don't get that at all and asked her to explain. I didn't understand that either so now I ignore it.... x
Unfortunately some nurses are not clued up, sad but a fact. If you have emphysema you have COPD. If you have COPD you may have emphysema or chronic bronchitis or both. Confusing for many people.
This seems quite normal in the U.S. hypercat - a young man from there tried to explain it to me a few years back on pm. I didnt get it then and still dont quite though it may be that it may be that the damage to the alveoli can be seen on CT scan but doesn't cause obstruction or show up in the fev1 etc. Or maybe breathing obstruction without any damage being evident.
If anyone has clarification on this Id be pleased to hear about it as it comes up regularly here and is very confusing. Perhaps Stone knows . . .
Chronic Obstructive Pulmonary
Disease (COPD) is not one single
disease but an umbrella term used to
describe chronic lung diseases that
cause limitations in lung airflow. The
more familiar terms 'chronic
bronchitis' and 'emphysema ' are no
longer used, but are now included
within the COPD diagnosis.
The relevant point is that both emphysema and chronic bronchitis are obstructive lung conditions. The clue is in the name. I think there are other lung conditions which are not classified as obstructive but which also cause airflow limitation.
The discussion was confined to COPD to avoid causing more confusion. You are absolutely correct about other conditions classed as restrictive, such as scoliosis, interstitial lung disease (ILD), and sarcoidosis to name a few.
Again to clarify COPD is due to difficulty exhaling. This can be caused by narrowing of airways or damage to lungs.
Restrictive Lung Disease means the lungs are restricted and cannot fully expand to fill with air.
In both cases there is a shortness of breath.
It is possible to have COPD and Restrictive Lung Disease at the same time which may add further confusion for those who are not fully aware.
I feel that it’s your definition of COPD that is confusing people. Copd does include Emphysema. Most GPS will know this.
I have had several posts on this, and I would ask people to re-read mine, because I was quoting the National Institute for Clinical Excellence, who say there is NO diagnosis for COPD, only an educated guess! If you have a definite diagnosis as say with Emphysema, then you do NOT have COPD. Doctors who claim this are deceiving you!
You're right - there is some reversability in earlier stages of copd Gazza and it's not impossible you may be being over-medicated (though also quite possibly not!). A steroid inhaler is given for copd when it's at the severe stage, unusual before that though it will be given for asthma as you're aware. If you're taking a steroid inhaler such as Symbicort or Fostair - there are others too - I believe it's unusual to be prescribed regular ventolin. Normally you would just keep it for emergencies. Others may come on and amend what Im saying but that has always been the information Ive been given by my GPs - but we are all different.
Anyway this is my experience as a long term asthma/copd (severe) patient taking Symbicort. Please not: this is my experience only - Im not a medic so there is no authority attached to what Im saying here: which is that when I want to reduce I try leaving out one puff say, every other day, for a week and see if it makes a difference. If Im fine like that, I carry on for a while longer, then try reducing that puff to every day and then see. And so on. In other words I experiment but I do it very slowly. So if you are trying this, if your inhaler contains a steroid it will build up over time and worse breathing when reducing it may not show up straightaway either. If you're breathing gets worse then you can quickly return to what you've previously been taking without any harm being done but you will have some possible answers to what you are asking in your post.
I self manage the amount of Symbicort I take according to the season as my asthma is very allergic and varies over the year, being affected by pollens, tree spores in autumn etc. My doctor is happy that I control how much I take and will ask me how much Im taking at present - she knows I want to take as little as possible but also that I wont put myself in danger.
In fact you could make a telephone appointment with your doctor, tell her/him you want to manage on the least possible medication and ask if you can try reducing and plan it with them. That would probably be the best solution. We find we have to be proactive in getting our needs met.
Re whether you have asthma or not, I have just had my first consultation at the Royal Brompton Chest hospital (pretty much world authority on lung conditions) and having heard my account of my symptoms etc the consultant said I appear to be a 'real asthma/copd referral'. She said they get many referrals of people with copd and asthma who turn out not to have asthma at all - their doctors just haven't assessed them properly.
It is certainly true, as seen here on the forum, that many GPs are very casual with their investigations into those of us who have breathing difficulties. So Ive been wondering about why so many 'false' asthma diagnoses are made. It could be that it justifies doctors referring patients to the surgery's asthma nurse when they dont have a copd nurse - just a thought. But asthma nurses are frequently not trained in how to distinguish and treat copd. Sorry this has gone on but I remember being uncertain about so much when I was first diagnosed. Good luck
Thanks 02 I wouldn't mind them doing a blanket diagnosis if it wasn't so bloody important. From what I have researched when you are able to open your airways with ventolin and you have copd you should be using only rescue inhalers and no preventer with steroids at all. If they are long or short acting it doesn't really matter. It's says taking a long acting beta agonist is no different from using salbutamol 4 times a day. I think people get caught up in the uncontrolled asthma thinking when they hear people saying they use salbutamol several times a day. Good luck at Brompton. I know you were going up to talk about valves and ablations etc. What was the outcome if you don't mind me asking. Thanks.
I dont know about initial treatment for copd as I was dxd well into the moderate stage and had had asthma already for so many years. But my understand has always been that when you're given a steroid inhaler it's usually with a bronchodilator in it as well and it would be unusual to also take ventolin x3 a day.
You could pm stone-uk and ask about the NICE copd treatment pathway - he's posted it before I think. Id give you the link but I can never seem to get the right bit, there's so much.
Brompton was useful - you remind me I was going to post about it so watch out for that then I wont be repeating myself!
I was told the FENO test was to check re inflammation (?)
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