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British Lung Foundation
36,980 members44,115 posts

Fed up being breathless

Surely with all the knowledge that we have, somebody could come up with a better solutiuon to the treatment for copd and asthma. Instead we are stuck with the same old treatments of steroid inhalers and a few tablets that don't really work. Or if there is tablets that work I haven't been offered them. A year ago I asked my GP about a tablet called PDE 4 inhibitors. With names like Roflumilast indicated for severe copd. She said she would ask about it and a year later I'm still waiting. I'm not sure if the cost has anything to do with it but they should at least let us try it. Is there anyone out there on these type of medications and if so do they make a difference..I have a medication review shortly and would like to know if there is any new treatments I could ask for. At the moment I am on triotopium relvar Ellipta inhalers and uniphyllin tablets and losarten and atovastatin and oxygen. 2 ltrs per minute at rest and 3 Ltrs when walking or doing anything. I know it's a progressive disease but does anybody have any ideas

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I am sure sometimes new things are found but they end up being too expensive so their not offered. Don't know how many times on the news you hear about new cancer drugs being discovered and yet rarely offered to people as they cost too much.

I don't know the answers but I think at some stage our health system is going to have to change. Maybe all who can having a fund or something, I don't know but this current system just doesn't seem to work.

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I couldn't agree with you more maybe too many people to treat with not enough funds. But I will say a lot of money is wasted on useless treatments. Just keeps the drug companies rich.,

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Hi, I've often wondered why the Government can't somehow set up a pharmaceutical manufacturing type thing, making either the most expensive or the most used drugs. These could also be exported and profits used for R & D. If it was run correctly, it would be self- perpetuating, wouldn't it ??? Seems maybe too fantastical? I don't know, it was just the germ of a thought. Any thoughts?

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That would be a good idea for a lot of other things as well. It would need a body of people to implement it that had the means to set it up. The Canadian pharmacist Barry Sherman did something like that with his business Apotex. They made a fortune making and selling generic drugs. That's what we need cheaper effective drugs that work

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Morning Maas. Yeah, I couldn't agree more. Big Pharma attempt to justify their obscene profits citing R&D etc. I've read somewhere that they make millions selling the patents that they don't think worthwhile to the smaller, generic manufacturers, who then try, no, succeed in recouping their costs by charging exorbitant prices. There was something about Epi- Pens but I can't remember the details. As far as I'm concerned, profits and shareholders should have nothing to do with Health.

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Hi

The problem is, we are not being treated for the condition. We are treated for the effects of the condition, which in most cases is breathlessness.

We take medication or use remedies that help move mucus, to give clearer airways. But we don’t have any medication to reduce continuous build up.

We take medication to open the airways. But we don’t have any medication to improve the gas exchange or remove the excess air .

Even extra oxygen will not totally compensate for, poor gas exchange or the uptake of oxygen.

As I pointed out to my respitory team, I take five forms of medication, each one helps a little bit, but non stand out.

You will realise from reading various post, that once you receive the three inhaler treatment. That’s your lot despite the condition worsening. There is a couple of extras, Oramorph, Oxygen therapy. Non of which treat the cause.

The best we can do is to make lifestyle changes to compensate for our inability’s.

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Thanks for your reply. Dosent seem to be an answer to this problem I agree they don't treat the problem just give us inhalers a quick fix. I'm sure there's something more out there but we won't be given it Too much money is spent on the existing treatments Big money being made by drug companies.

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That is so true, I'm afraid.

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I tend to think cost is the biggest issue in the UK. My neighbour in the UK was told this directly by his doctor. He had to fight for the meds he has quite hard but eventually got them.

It is case of not only fighting the condition but also fighting for the meds to control it.

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This is something that I've been thinking about, too. The medical community/industry seems to have made great strides in the treatment of cancer and heart disease, but not the equivalent advances in the treatment of COPD. I'm hardly an expert, but this is how it seems to me. Basically, you have inhalers and oxygen therapy for COPD. That's about it. And without researching it, I would not be surprised if oxygen therapy has not been in use since the turn of the century. So the question is why? Why has medical technology not kept pace with the treatment of COPD? I have wondered it it's possibly because researchers figure that in another generation or so smoking will no longer be something that people inflict on themselves, and so at some point in the not too distant future, COPD will be a disease that is seldom seen. Just a thought.

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If the researchers believe that if people don't smoke, COPD will more or less vanish, I think they are kidding themselves. The figures don't add up, smoking might just be a contributory factor for many people, because, while some people who have never smoked also have COPD, smoking cannot be considered the only cause. I believe we have developed a blame culture for many illnesses, not just COPD, so people blame themselves for their illnesses and accept poor quality medical treatment.

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Because the bulk of the money and priority treatments is given to heart and cancer. Lungs are a long way behind with regards to funding etc. This is one of the things the BLF is fighting for - to be given the same parity as these two. Let's hope they succeed one day. x

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Thank you for all your comments. Reading them I think we are all in the same mind. I know there are treatments out there and I think we should all be given them if needed. Only us that are inflicted with this debilitating disease know what it feels like to have your life taken away as you know it. All the things I intended to do when I retired have gone for a burton I feel so limited in my activities. But if there are treatments that are being kept back from us then we all need to insist we are all at least given the opportunity for a better life.

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I am not sure the treatments are there because of lack of funding. They could be if lung disease had the same funding as cancer and heart. x

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Yes totally agree we seem to be the poor relation in regards to new treatments - interestingly recently I read an article on the 10 best advancements in treatment/etc. for COPD in the last 10 years - 7 of which related to new and improved inhalers, one to G.P.s having more general knowledge of the condition, one on the age of the internet and can't remember the last one but all were about managing the condition not one about curing or seeking a cure - all rather depressing - like you I'm fed up too xxx

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Yes that's all they do is keep changing inhalers and never doing any research into dealing with the actual disease. There are a lot of clever people out there, it's hard to believe no one has come up with a cure. But then I tell myself if there was a cure we wouldn't get to know as the big drug companies would lose a fortune. And it suits them to keep us all dependant on inhalers

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First off- I have very severe COPD, but just because there is no cure does not mean it is a conspiracy to make me suffer. Listen to yourselves, blaming everyone else because nobody has found a cure for your particular problem. Lungs are very delicate and once they are damaged they don't regrow (stem cell treatments ARE being examined and lots of clever people are working on solutions for us all over the world) but until a way can be found to make them work like new, I'm afraid we will probably have to put up with it. Complain all you like - I doubt it will help you much. You could have a lung transplant i suppose - but you'll be on meds for the rest of your life and seeing a consultant 3 times a week - that is if you make it through the op. Most of you have no evidence for your assertions, nor do you seem to understand how medicines and pharmaceutical companies are financed or how they work. Yes, they do make money when drugs are in-patent, but after 16 years there is no money to be made (because anyone can make the drug if they want to). it just sounds like sour grapes whining about how no one has cured me and so it must be someone's fault. We are in the early stages of modern medicine - before the war we didn't even have antibiotics, so please be thankful for small mercies - please. Have a positive outlook on life - keep exercising if you want to survive it is the best-proven thing you can do.

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PS sorry to sound so harsh everyone- but I just disagree quite a lot with what I was reading - I'll go back to bed now and shut up.

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This is an old message board but feel the need to share what I've uncovered this past year in hopes it helps anyone reading this.

About 4 years ago my mom, who has COPD and two weeks prior told she has beginning stages of emphysema, ended up in the emergency room due to an exasperation and was perscribed Daliresp. Prior to that, she would end up in ER or doctors office 7 to 10 times a year with some sort of lung issue was like pneumonia etc. The insurance company denied the medication because it was new, expensive and no generic option. It took a few weeks for the doctor to get the medication approved after submitting pre authorizations, overrides etc (and offer her first born - jk) She has had huge success wiyh Daliresp and has NOT BEEN TO THE HOSPITAL OR CLINIC ONCE!! NOT HAD ONE LUNG ISSUE ... NOT EVEN A COLD since starting Daliresp!!

About a year after mom starting Daliresp, my dad's COPD started worsening and his last ER visit the ER this past January staff had to vent him in the hallway his airway had closed and we later found out he had severe case of pnemocca pnemonia and was put in a medically induced coma for almost two months. When he was healthy enough to wean him off the sedation medications, allowing him to wake up, he didn't show any signs of life and at one point were told the ventilator was keeping him alive and we need to start thinking about his quality of life and if he'd want to be kept alive by the machines etc. He eventually recovered, thank God, but it was one thing after another. We had to take him to the ER twice while at an assisted living facility, which was his last stop before going home. he went home May 8th and within two weeks was back in the hospital for 5 days, home 2 days before going back to ER and being admitted yet AGAIN! This time they discovered scar tissue had frown from being on the ventilator and his airway was same size as a drinking straw. We were excited to get answers and hopeful the laser surgery would help. The second ER visit while in the assisted living place, the 5 day stay and now the last he was given a bypap and WAS AMAZING!! A bypap is just like a CPAP but it PULLS OUT the carbon dioxide so patients don't get oxygen poisoning. it regulates the air in AND OUT and a CPAP only helps push air in and out and found out when lungs are swollen or obstructed can be difficult for them to properly absorb and expel. it sounded like the BYPAP was fairly new and ONLY GIVEN to people after a sleep study and wasn't possible to get with prescription or any other way. Dad has his sleep study coming up next month (they take 3 - 4 months to get an appt here.) He felt always amazing after using it, was given steroids and antibiotics and wpuld go home feeling great but that was lasting less and less and the mucus, infection in lungs was happening more frequent and sooner. I started thinking and realized all his problems have been due to the mucus in his lungs and that they really began almost same time as mom but each hospital stay was diagnosed with something else and that was covering the real pattern and reason for concern. having gone thru lung doc appts and ERs with mom i would always mention how MUCH SUCCESS she has had with Daliresp and ask if the doc if they were aware of it and whether or not it would be something dad could try. Not one doctor offered and have all said they dont know much about it nor have they prescibed it to anyone making them unaware of side affects, success rate etc. His specialty and primary doctors are located in the largest, most advanced hospital in a large metropolitan area. how is it possible that not one doctor here has prescribed this medication and there isnt another doctor in the entire place he can go see that does know something about it!?!? this made no sense to me until I realized that it's a pharmaceutical issue. clearly the company that makes Daliresp isn't a contributor or whatever it's called and the reason not one single doctor (and we are talking hundreds and hundreds of specialty docs) knows anything about it is absolutely insane and extremely upsetting to realize all the conversations i had about daliresp, my fathers health and treatment options were a waste of time and each knew daliresp wasnt ever going to be a consideration or option but didnt tell me. instead acted as if there was a possibility makes me very angry and have documented everything including the fact that had had he been given a perscription for Daliresp last year, or something similar, he most likely wouldn't have been in a coma or have had a year from hell!! Sad day to realize his quality of health means nothing and that politics are in control and the ones responsible for determining factors on a persons life, not us or even our physician's. He is back in an assisted living facility and I've outlined all his health problems, provided documents of every ER and hospital stay and what my expectations are in his recovery with the first priority being he is prescribed Daliresp (or similar med) or given referral for someone who can. I used to blame poor healthcare on the "practicing" physicians inability or experience but now confirmed that I can also add limited and immoral, unfair, and extremely unethical that a patient be limited to certain drugs and /or manufacturers is incomphrendable. Next time you're at the hospital, notice the doctor will often leave a patient room and go surf the web. We can all do that and when you do make sure you are heard and action is taken! If not, dont waste time and find out if a medication will/can be given or if you need to switch to a different clinic or doctor. seconf opinions are more important now then ever and each of us must become our own (and our families) advocate, document everything and never ever GIVE UP!

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