My COPD is getting worse

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Even just getting out of bed in the morning, makes me breathless.

I have inhalers, been taking steroids and its still bad.

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  • Posted

    Are you using oxygen ?
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    • Posted

      Not yet Sharon, was hoping it wont get to that.

      Its got worse the past few weeks, and the steroids are not having the effect they used to have a few months ago..

      I have 2 different inhalers, and the Ventolin for a quick out of breath dose.

      I am on a course of Ciprofloxacine 500 antibiotics at the moment, but not having much affect.

      Have you had experience with oxygen at home?

      Thanks for replying.

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    • Posted

      Hi Sorry your feeling so poorly and treatment hasn't made much improvement.

      You mention inhalers so made me wonder if you have both short term and long term bronchodilators. The long term one that I have is tiotropium taken once daily . It works slightly differently to salbutomol. It has been very good for me.

      Best wishes to you

      Robert

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    • Posted

      Hi Robert,

      Thanks for taking the time to reply.

      Not heard of the inhalers you take, here below are mine.

      I have Exlir' Genuair, 2 puffs once a day.

      Symbicort Turbohaler, 2 puffs X 2 a day.

      Was given 2 weeks course last week of Muscodyne, which havent made any difference either.

      On my last week of steroids, coming down from 4 a day to 2 a day.

      So how long have you been suffering Robert, mines about a year, but at its worse now, and if I walk a few paces I get breathless, but okish sitting down. I am a youngish 72yrs old, if thats possible.

      Would like to hear your experiences with the problem.

      Regards, Ron.

       

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    • Posted

      Hi rtaxron, Not sure if this will help. My husband 70 years old has asthma and fixed airway obstruction (I assume COPD) as this what they first thought he had when he was admitted to A and E 1 year ago.  He is on symbicort, regular salbutamol and Tiotopium also called Spirvia which is what Robert has.  This was the last one to be added to his regime after two A and E visits by ambulance.  This one has made a big difference and as Robert says it is taken once a day, a capsule which you put into a round inhaler.  He still coughs a lot and has tried mucodyne without much success.  His breathing is much better though of course he does have flares ups.  I do hope you can get some help and get back to walking again.  Do let us know how it goes.
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    • Posted

      Hi Libralady,

      I have a post sent 20min ago waiting to be moderated, as there is a link in it.

      But I realized that I have had Tiotopium, and Doc changed it last year, which has made me think if it was the right thing to do, as I am worse now, than when I was on it.

      I dont have coughs or bring up Mucas, and Im fine sitting down, and like your husband, have been admited to A&E twice.

      On the 2nd time, 2 female Docs said to me, 'Mr T, if it gets very bad, would it be OK not to resucitate you? Cheeky buggers!

      Cheers Ron,

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    • Posted

      Cheeky buggers indeed.  Maybe your doctor might try you on the Tiotopium again.  I know a lot of patients when my husband was in hospital said it was the best thing they had been prescribed.  Was it the hospital who first prescribed the tiototium or your gp.  Sometimes if it the consultant then the gp will continue but I do wonder about cost of drugs in the NHS.  Not sure where you are but we have recently moved from Greater London to Greater Manchester to be near family.  Do let know it goes Ron.

      Carol

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    • Posted

      Cant' believe they said is it ok not to resucitate you, i don't think some doctors have any sympathy with x smokers.

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    • Posted

      Hello Yes you may well be right although the doctors were fine with my husband who smoked since his mid teens, giving up 8 years ago at 62. He decided to give up as he got a bit out of breath on exertion.  He was fine until last year when he had to go to A and E and was finally diagnosed a little later.  Looking back there were probably odd warning signs, although few and far between, times when he could not get his breath.  Obviously the smoking had done it's damage, but just glad he gave up when he did.  No way should doctors ask if it ok not to resusitate you.  Surely that would be a decision you would make after consultation with your family and the medical team if and when it was right for you.

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    • Posted

      Doctors do ask because they need to know if for instance a patient was rushed in to hospital and no family were withe them how will doctets know wether to resuscitate ir not if it's on the patients notes all ready they there is no questions about what the patient wants so doctors do ask if know it might not seem nice or right and should be a family thing but as stated above not always is family available hope that has cleared up that for you

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    • Posted

      I appreciate what you say and I am sure that they do have to ask for the future so it can be put on the patients notes, however I think that in Ron's case and I apologise if I have got it wrong it might have given him the impression that he was far worse than he was, or that they did not think he would get through another flare up. 

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    • Posted

      May be they did ask too early I can understand that let's just hope it was a question too early and that hubby has a long long time left with you and your family I can imagine it was upsetting take care x

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    • Posted

      I have smoked for over 40 years and when i had a ct scan to see why i was loseing weight they found 3 things bowl problem gallstones and said some changes to lungs from smoking and that's all, i have had to found out everything else myself and got a lung test in 2 weeks. But i have had no signs at all that i can think of, and just started walking 2 miles every few days but to be honest i could walk alot more.

      What do they mean by exertion ? if i run up an hill i puff and pant but most people do that.

      Hopefully your husband has many many more years left.

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    • Posted

      quote john80670  " What do they mean by exertion ? if i run up an hill i puff and pant but most people do that."

      People with moderate to severe COPD get breathless on exertion, this can be just walking from one room to another at home.  For very severe and people who have a lung infection they can get breathless just talking. No breath for smoking.

      Breathlessness is part of living with COPD, it doesn't mean we can't do anything just because we get breathless, but running up a hill is unlikely to be achieveable for someone with moderate to severe COPD.  

      Did you get a diagnosis yet john?

      I recommended PR course to you on another post but of course you won't qualify for that if you have not been diagnosed.

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    • Posted

      Hello Ron,  do you know why the chest consultant took you off the Tiotropium and changed you to symbicort.  With my husband he started with regular salbutamol (still does) then they added symbicort 1 puff twice a day increased to 2 puffs twiice a day and then added the Titropium after being in hospital on steroids.  This one really improved his breathing although as I mentioned the cough can be bad at times.  What I do know because we had to check with the doctor the titropium can cause urinary problems on men so if someone has prostate problems like my husband they you take this under the care of the doctor fortunately it has not affected him, which is great as these days all medications seem to cause side effects.  I should know the amount I am on but that's another story.  Good luck hope you get sme help tomorrow when you phone your gp.  Meant to say have read the link you left for Robert quite interesting.

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    • Posted

      Hi Ron

      How are you today ?

      Just been reading some academic papers on inhaled therapies FOR COPD.

      SOME VERY PROMISING looking combinations are in late clinical trials. Some have shown significant increases in exercise tolerance , reduced flare ups , and breathlessness. The space appears worth watching.

      Progress is being made so we might benefit as well.

      Best wishes Robert

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    • Posted

      No diagnosis yet got lung test next week i think it is, they only said some changes to lungs and asked if i smoked that's all i know.

      But when i do see the specialist again i am going ask why he never seemed to care less about it as if it was nothing.

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