My GP told me that I was on the ONLY treatments available for COPD, I was on ONBREZ once a day combined with SERITIDE twice a day.
I went home and did some research and found out about the new inhaler Relvar Ellipta, I went back to the GP and demanded this to try which meant stopping the other two inhalers.
Now my question is, Is there a comprehensive list available covering the various treatments and inhalers ?
Would it be to time consuming for one of the BLF Nurses to post a comprehensive list ?
Maybe it's just my GP who has zero interest in treating COPD as she seems to have the attitude, "well you smoke, so what do you expect"
Yes I smoke, I also has Scarlet Fever in 2011 spending 6 weeks on a respirator in a coma and contracted pneumonia twice while in ICU, in 2013 I was treated for cancer, 6 weeks on Chemo/Radiotherapy, the Chemo caused 2 separate lung infections that needed hospital treatment as an inpatient. At the start of the cancer treatment I had lost 25% of my lung capacity by the end of it I had lost 50% of my lung capacity. Because I smoke, I doubt it !! yet my GP has no interest in treatments/tests and tells me that seeing a specialist Dr in hospital or being referred to one is no longer done, she is there to treat COPD.
Is this true ? My ordinary GP is now my only port of call for any treatment regarding COPD and loss of lung capacity/chest infections/treatments and so on.
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PeterK1
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Hiya PeterK1. I have lung cancer and COPD and see a
specialist in Queens Hospital for both. There are a lot of inhalers around, I'm on Tiotropium which is a capsule you inhale once a day. I'm not sure why your doctor said that, but don't give up , I asked my cancer specialist to refer me to the lung clinic, do try that. I hope you get on ok.
I don't have copd but lots of others do and reading their posts they get far better treatment than u. All hospitals have resp clinics so don't c why u hqven't been referred . U maybe need to seek out a gp that isn't prejudist against smokers .x
Look for your local respiratory team. You don't need a referal from your GP....just ring them and if you can't get to a surgery, they will do home visits. They are well trained specialists and your gateway to treatment and advice.
Can you ring the BLF helpline today for advice,they open at 10am . You can find lists of inhalers on some internet sites...the NHS one can start you off. If you look at the posts and questions here you can see the medication that suits one person may not suit another.
Sad that your Doctor is like this, makes you wonder why she is in such a caring profession. You can see by all the repies that help is out there, I have had lots of help from C.O.P.D nurse and Specialist at Kings Lynn hospital here in Norfolk, wonderful team, I'm very lucky to have them. My G.P is very negative about everything, he puts any ailments down to old age or weight. Talk to BLF they will put you on the right path. Good Luck x
My GP hasn't referred me to anyone either BUT he did specialise in cardio/pulmonary diseases. I am on Spiriva once daily and have recently been changed from Fostair mist inhaler to Symbicort turbohaler as he feels that this is more appropriate now.
I am also a smoker whose problems only began after coming back from Paris with a three month long chest infection. That was approx. four years ago and my breathing has been reasonably stable since but with approx. 50% reduced capacity.
I have also had a genetic screening and have the alpha1 anti trypsin mutation so could have been exactly the same if I'd never smoked!
Don't let them beat you down or make you feel guilty...you don't need it.
Thank you all for the advice, I will ring BFL this morning and find my local clinic to see if I need a referral. My GP just bought a new Range Rover, got married and went on honeymoon to Barbados, I think her interests are in what she gets paid, not in patient care.
You should have a respiratory specialist at the local hospital who will refer you to a respiratory nurse who you will be able to contact if you have any problems. Your respiratory nurse will be the equivalent of god. As a specialist herself she will look at your treatment plan to make breathing easier and will send a letter to your doctor telling what you need, and most of all to prescribe it. In my case I am on Spiriva and Symbicort, very good inhalers for copd, and ventolin for short term. You doctor is a waste of space. If you can change your doctor do so. At the end of the day it is your health, your life. A good nurse and doctor will give you the right treatment to make your life much easier. Good luck...
I would have a look on google for a local respiratory team and if you cant find one - ring the practise and ask for them. I would also ask for a referral to a consultant. There are masses of different treatments available - my husband uses Spiriva once a day to open his airway, symbicort upto four times a day which is a combined reliever and steroid plus ventolin as an emergency reliever. In addition you could ask for a referral to pulmonary rehab which is a course of exercise and information. I would also ring the BLF helpline (Click on the red balloon in the corner) - they might be able to offer more advise. Take care and keep on until you get the answers you need. My husbands doctor was much the same until I found the local respiratory team. Take good care, TAD xx
What I find strange is, I have told my GP that in the past I have worked with asbestos, working in British Steel (when it was British Steel) and I also worked as a miner down the pits, I went to see her about my lung capacity dropping so much in such a short time (3 weeks) and I told her about hip, groin, and lower back pain,yet her only comment was well you smoke and you're on all the medication there is so there's nothing I can do.
Turns out the hip pain is from Radiotherapy, the lower back and groin pain is due to a new tumour so my lungs are all that I need help with now, I am really scared that it's asbestosis that is causing the very rapid drops in lung capacity.
But then if a GP says it's all because I smoke, then who am I to doubt her word. She's the professional, I'm just a commoner to her.
Was diagnosed in 2010 with a spirometry test, they told me it was stage 1 then. 2011 scarlet fever, in 2012 another spirometry test and they told me my lungs had improved? 2013 diagnosed with cancer and 2013 radiotherapy & chemotherapy then another spirometry and told lungs have now lost 50% of their capacity. I have never seen a lung specialist or had a scan, but the GP did send me for a chest xray once that didn't show anything?
My gut feel, google "BLF, yourtown", where 'yourtown' is exactly that, the town where you live. Up will pop details of local BLF Breathe Easy groups .... basically small self-support groups of local people with lung problems, generally COPD, who meet once a month for mutual support.
They're going to be by far the best for knowing which surgery's & GP's give the best support & treatment in your local area.
You'll see from the web when & where they meet ..... just turn up, it's very informal, very friendly & there's always a cuppa. They'll be really pleased to help & in particular they know the local respiratory scene far better than anyone.
I would seriously think about changing your GP or seeing a different one within the surgery if it were me. You haven't any faith in her and don't feel she gives you the care and support you deserve (nor do I). I really can't see how they can diagnose with any certainty or rule out it may be another lung condition just using spirometry. I don't have copd but have bronchiectasis and asthma - I do know there are very few of us where bronch can be picked up on an xray and the best way to diagnose properly is to have a ct scan. I am in no way saying you don't have copd or that you have bronch - what I am saying is a ct scan would let your medics and yourself know what the correct diagnosis is.
My consultant has a cf clinic, a non cf bronchiectasis clinic and a general respiratory clinic which copd patients attend.
not sure if it works on you but i have alvesco and spiriva, i am sure your pharmacy would tell you what others are on the market but really you should be advised by a consultant not a doctor.
Good comment racey.....twice I have had a chat with my local pharmacist before doc appts about alternative inhalers to the ones I am on which I feel are not helping much. I then see the doc with NAMES of other inhalers which might be better. They have agreed and prescribed them. Pharmacists are a good source of info with plenty of time to talk to you.
In my opinion your GPs comments are outragous as is her treatment of you. A good doctor woud want to help and support you in getting improvement as well as expanding their own knowledge & experience..
I suggest (as wellas advice above & Breatheasy Groups) to get back to your surgery. See the locum or another GP. If they dont refer you to a specialist then you must change your GP practice.
I have COPD; I smoked (emphasis on past tense) for over 50 years; I would only suggest that if you have COPD and still smoke...., you need another kind of doctor..., perhaps one that concentrates on illnesses of the mind.
I use Spiriva and Symbicort to great effect as it improves my lung function considerably. Additionally, I force exercise on myself in order to 'stretch' my lungs and force my body to 'work'.
I haven't had the additional problems you say you've had but I would think that adding the foul habit of smoking to the list of health negatives is a completely looney thing to do.
hi peter l think your doctor as an outrageous bed side manner ask yours to refer you to hospital to the chest clinic if she still refuses get yourself another gp good luck
Smoking is their "Get out of jail free" card as is obesity. Soon it'll be because you eat salt! They are there to earn their money by giving you the best treatment no matter what your lifetime choices are - as a smoker you are contributing £9 billion + p.a to the National coffers in revenue - remind them of that. I would switch to another GP - don't like the sound of that one - while you're about it try switching to an e-cig, it worked for me and I have COPD and asthma. Now so improved just down to 2 puffs of Iprotropium a night. And still not missing smoking after 4 years. Good luck!
Hello peterK1, there is not much to add to what everyone else has said in reply to your post.Except to say I was told many years ago doctors cannot treat you differently because you smoke, but in practice if you have a lung problem they like to see you are helping yourself i.e by giving up bad habits or at least trying to and working with them to get the best outcome. I have COPD and take Spirava, Seretide and Salbutamol I am an ex smoker so understand what you are going through. Believe the inhaler you mentioned is the latest discovery but does not suit everyone, it is a case of trial and error. I agree it would be helpful if you saw a consultant to advise your GP. But many of us do receive our COPD monitoring by our GP surgery rather than hospital. There are no hard and fast rules about treating respiratory illness, go back to your GP and let them know you are not satisfied, would be my advice. Good luck and think about giving up smoking if possible its the best first step you can take towards halting progression of your lung problems.
Hi, My local GPs are very good they cover a large area as I am rural, my drugs are often refused not by the doctor but by the Government who decide whether it is cost affective, although they have a lot of patients there is no nurse who understands my condition, but I get the best care they can offer. The hospital can some times give help on the telephone or they will try and visit me. Sadly you are still smoking which hinders a lot they can do for you, as your lungs are bad I do not know how you can manage to smoke, but should you need oxygen this can not be given as you smoke. Maybe you could have a chat with them about help to stop smoking. Good Luck
Your doctor is telling you rubbish, u poor thing u have bn through so much thats not been ur fault. I have never smoked and have fibrosis, but not not against against all smokers. U r entitled to be referrrd to the hospital chest clinic. U r also entitled to rehabilitation exercises, four men who were at the class had ocpd and were smokers. They also got lots of info and encouragement, like I did. Only thing u wont get is oxygen., which I get. Please let me know hoe u get on. If there is anything else I can help u with please contact me, Babs
Did you all know that every time your GP refers you to a specialist the surgery gets charged £200 I think it is. If they send you for Xray same thing or a blood test. That's why they don't want to refer you too often. Sometimes t(if they know what's wrong) they refer to specialist so he can do all the tests and xrays and first prescriptions because it doesn't get charged to the surgery. It's about being cost effective not about human beings. Sad
I'm not sure how the financial side works but I'm pretty certain that they collect money for all the patients on their books. When you consider that the majority are people like my son, who sees a doctor on average once every five or six years for the odd antibiotic, they have to be on a big winner. Too many seem to want the penny, the bun and the bakehouse I'm afraid.
I should have mentioned it here but I do have another topic/post on here about Champix, to give the new Relvar Ellipta inhaler the best possible chance to do it's best for me I will be stopping the smoking, in fact I go in the morning to start on the Champix. Thanks to all of you for the advice and well wishes and I will stay active on here and keep you up to date with how I get on.
i asked my doc today about ellipta .... he promised to do some research as it wasn't in his lists as available. Thankfully my doc is fab. Hope you get sorted onto drugs you want.
Re Champex.If you get any signs of confusion, negative thoughts or depression symptoms please stop taking it at once.This has been "black-boxed" in the US and the Drug Company is paying out $250 million in damages to victims or the families of those who have taken their own lives. I'm sure it works for some quite successfully but before taking any mind-altering drug it is as well to do some research. I do wish you well Peter - I've been in the same place myself and it's hard going - please keep us informed of progress.
I have spoken to the chest clinic at my local hospital and I do need to be referred by my GP, I also contacted the BLF through the Red Balloon and a nurse rang back. The conclusions are that due to my working history and my previous health problems my drop in lung capacity can not all be blamed on smoking, there does need to be some investigation done in to just what is happening and why my lungs are going down hill so fast, but apart from a lung transplant there is only the available medicines that will help make life a bit easier, stopping smoking is my number one priority and finding what treatments best work for me, but if the acceleration of my lung problems stay at their present rate I will be looking at short term help rather than long term I think.
Next step is to go back to GP and demand that I am sent to see a specialist to at least identify what the cause is, or what the causes are, probably more than one thing to blame.
A very big big thank you to you guys and girls for all your comments and help. I'll stick around and keep you all updated.
Even if it can't all be blamed on smoking, stopping is bound to help. I've given up so many times Peter but always fallen off the wagon until now. Please do some research on ecigs - the evidence is there that they are a thousand times safer than smoking, plus you don't have the "quit or die" problem which you can do without. Try googling UKVapers and see what I mean.
My consultan told me that i was on the highest treatment and he couldn't offer any different treatment, that really cheered me up, then they wonder why we get depressed. Lets get the vodka out.
Is your consultant aware of the latest prescription inhaler that was licensed in the UK 2013 ? Relvar Ellipta, ( or are you on this ?) I would bet he/she has never even heard of it !!!!! ASK THEM, DEMAND IT, TRY IT. leave out the depression and the vodka and do some research then go back, or phone his/her secretary and get an urgent appointment.
You are mistaken or you have looked up the wrong thing, it is for Copd & Asma there are 2 doses for Asma and only one dose (the lower one) for COPD, I have provided a link in another post to Relvar Ellipta
get in touch with BLF,NOW.and while youre at it,put in a complaint about your "so called GP".(some GPs dont know their ar** from their elbow.!!!!!!!!!!
Hi PeterK1 what a fiasco! without a doubt you need to make sure you are heard ! And there is a lot of history with you re your lungs.Whatever the reason for your problems do not matter unless you are making some kind of claim then of course it matters! All any of us want is good up todate treatment offered to us to help us live as long as we possibly can! My resp nurse and myself went right through all the available inhalers including the one you speak of,un fortunately I cannot take this as it is a powder which just makes me choke there is only one inhaler on the market that is a mist which is spiriva respimat, wish they would do it in all inhalers so people like myself have that same choice. Keep fighting for the best Peter and keep in touch. Janexx
hi peter,,,i would change my gp,,and honestly try stop smoking, [hard as it might sound, i am in the throws of that now,, and strangely enough finding it easier than i thought,, 60 years of smoking has seriously took its toll, frightening really,]
however i did this,and in my case it was the best move i ever made, it was really to have a nearer gp, as my old one i had for years was about 4 miles away,, but he didnt really have too much interest in copd , just got the basics., the young lady doc now can only be described as an angel, she is so nice and helpful.
theres many, many inhalers really, i think its finding what suits you best .. all the very best peter kind regards jimmy.
Brilliant Peter I took it for a while the vivid dreams are special to say the least or they were with me I grew to enjoy them.Goodluck to you now wishing you every success. Janexx
Dreams definitely weird but seemed to give me the option to wake up if things were getting out of hand.
One of mine was when I was smoking .(in the dream) at the kitchen door when a baby kangaroo came leaping down the drive at side of house.( you know like they do). Anyway husband pushed past saying he would deal with it. I yelled "don't you go hurting that JOEY . Our gp then appeared from the garage welding a large scalpel he said ."I will deal with it humanely. "
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Janexx
Emphysema,new inhalers
Help? What Help??
restrictive / obstructive lung disease are they both COPD ?
COPD, QUIT SMOKING, INHALERS
