Hello everyone my name is jackie I am 2 weeks of my 60th birthday I have stage 4 emphysemia as well as a bone disease I must of been wicked in my previous life !!! My mum and her mum also had this dreadful disease I've had it 15 yrs from day one I was given a steriod inhaler now their saying that proberly wasn't the best thing to give me !!! But we didn't know that then how about trying a triple inhaler instead again they know not a lot with this triple therapy bit like the steriod inhaler so my question why after 15 yrs do we still hardly not hear anything about research into copd if i said i have cancer there is help offered left right and center not so with copd I used to get free transport to pulmonary rehab now sorry haven't got the money yet your offered money if u have cancer not fair my lungs aren't getting any better I can't get the help I need to go to rehab I'm struggling now I'm told to try a new inhaler no info just told might be better I want to be able to live not just to survive who is on this triple inhaler any suggestions pls I'm scared to try this new inhaler
Trying new inhaler for copd - Lung Conditions C...
Trying new inhaler for copd
Hi I know what you mean about money for transport t pulmonary rehab, I was told the same thing, so ended up not being able to get there. I'm on the triple inhaler and not doing to bad
Have a good night and take care of yourself 😊 Bernadette xx
Thankyou for your answer have a good night as well hun
Funding is certainly an issue with many things within the nhs I often think that for something like providing transport for pulmonary rehab it would be beneficial to both. Short term expense long term savings.
I can’t say about inhalers as I don’t use one tho lots of medical advances have been made in the last 15 years. What was thought good then may not be the case today. I always regard medicine as much an art as a science.
J
Thankyou for replying to me I guess I'm scared as something new can give side effects that frightens me with my breathing not that good
I haven't been able to find a triple inhaler that doesn't contain a steroid element,normally 3 stage inhalers contain a corticosteroid.maybe you should check with your consultant to ensure this is one recommended for you?
p.s if it is trimbow it contains a steroid in the form of beclometasone
Hi Jackie,
I am not on a triple inhaler but am on a kind of equivalent with 3 seperate inhalers, one of which is a steroid. I have stage 4 emphysema. I have been told that while it is now considered that a steroid inhaler is not recommended for the early stages of COPD it is often prescribed for severe stage onwards.
You didn't say who has prescribed the new inhaler for you but I understand your concerns. It may actually help your breathing and the only way to find out is to try it. If you do experience side effects then see your doctor. I have had side effects from some inhalers in the past but not from others.
Best wishes, Carole
Don’t be fobbed off with try a new inhaler I don’t personally like the powdery ones my throats dry and always having to clear throat I use fostaire and blue ventalin and have had copd over 18 yrs just know your own body and with fingers crossed hope to go home today after 15 days in hospital due to be changed onto unsuitable inhaler
Give the inhaler a try! I have stage 4 COPD and heart problems and have been on Trimbow for about 6 months now. I have noticed an improvement in my breathing . Good luck and let us know how you get on.
I'm still not sure what I am going to do I'm having myour 1st mri for my back today see how the breathing holds up on that I just can't understand how 15 yrs ago they were so certain I needed a steriod inhaler my doctor was a hour and a half walk away and same back i wasnt having any breathing problems yet immediately I was given this powerful 2 inhalers brown and blue now they want me to take either spirileto respirmat or if i keep on getting accubations and ive only had one !!!! In 15 yrs then put her on trimbow I don't trust the doctors now I'm scared and I feel alone that's not right
Spiolto respimat is a duel inhaler that doesn't contain steroids,you will only benefit from an inhaler that contains steroids if you have an inflammatory element to your emphysema with recurrent flare ups ,if you don't then it probably won't help and could over a long period of use give unwanted side effects .
You need to ascertain from your consultant as opposed to your gp or respiratory nurse which is the most suitable for you as only he knows best.
I saw an improvement in my breathing just bad side effects which caused 14 night stay in hospital
Just my point they don't understand how frightening it is to change inhalers glad your better how awful
Glad to be home I’m as fit as a butchers dog I’m that pumped up with steroids I haven’t sat down I’ve got to spend the next 65 days weaning myself off them .We put our trust in nurses doctors etc to get it right has far as trying new inhalers but I slipped up by not doing checks and unfortunately paid the price .Trimbow as a steroid inflammatory which isn’t good for certain patients.If you think you’re old inhaler isn’t working try something else but don’t be pushed into it
They are trying to push me that's what I am annoyed about even as far as putting new one on my repeat didn't tell me I found out and said put old one back on if I want to change my inhaler I'll tell you I was livid
My doctor told me they where only human but when on records no inflammatory meds to be given due to uc very poor yes we all make mistakes but you trust these people to know what’s best for us I have always been careful but will have to treble check in future at the end of the day we know our own body
We do know our bodies my doc gave me rescue antibotics so when I know I'm getting a infection i stop it in its tracks without waiting for a appointment then my copd nurse told me no u should see the doctor tell him your going to start taking them she obviously dosent know what rescue means we don't seem eye to eye and that's scary I don't trust people but to not trust someone in the health dept is terrifing if i could move in would i have adema in my ankles doctor juse said elevate your feet eek it's like im not taken seriously it could be heart failure that needs addressing but my doc dosent seem worried I am sorry for rant haven't got anyone to talk to or understand love getting older 😊
I’m 69 in January I don’t mind your rant get it off your chest lass but anytime you need someone to talk to I’ll be here
Bless you thankyou I know I shouldn't rant but do feel ignored at times I'll try not to bend your ear too often though 😊
Hello Jackie. Welcome to this lovely group. There is a new study posted on here today actually on Emphysema. Sorry i dont know how to share the link. Hope it helps and gives info for you. Let us know how you get on Brian
Hi Hun, I understand all you say. am not on Trimbow, I have in the Past asked my Consultant for it, I was refused. I take Symbicort 400 with Steroid every 12 Hours along with Eklira Genuair, in between Ventolin 20 + times a day, On Oxygen, Oramorph , Salt Pipe (My Choice) Breathing Exercises constantly. I am now feeling very poorly and I know the Emphysema is taking Over Quickly. I have been Stage 4 Severe for 6 years, & Long before I was Diagnosed. I have had 4 "Valves" inserted, they don't work any more. As You say, Not enough is being done in the Research, regardless of BLF saying they are. I have Collected for Many Years Monies, still do, for their research as thousands of others including Breath Easy Groups Do. Though Research Does Take a very Long Time. On our Forum we all try to help and keep each other Lifted. One Member who has got through her Negativity and being Scared of what the Future may Hold is "Emily 61" she is now doing Research into COPD Research to find an Answer, I thank her for this, she is trying her Best for all of us, Bless Her. I do hope you find a Answer yourself and Share with us. Good Luck Hun keep us all posted, Love n Hugs. Carolina. XXXX
Welcome to the BLF!
While I don't have emphysema/copd I sympathise with your concerns. My preventive inhaler was changed from Seretide to Sirdupla, no discussion, just changed out of the blue. I tried to change it back as it didn't work for me but gp refused. Luckily at my annual asthma/bronchiectasis check the nurse explained how Fostair would be perfect for the way I use an inhaler. I was dubious at 1st but my goodness, I've not looked back and rarely need to use the rescue inhaler Ventolin.
You may be surprised that the suggested new inhaler works better for you.
It may seem there are no developments on lung health or research (more money is thrown at cancer research, a lot is raised by CancerResesrchUK), BLF, British Lung Foundation, is a charity (we're so very lucky to have this forum to share experiences, knowledge and information) and research and trials are happening, it's just an extremely slow process.
Wishing you the best whatever you decide. P
PS you may find more info to help in the 'Related Posts' section to the right or scroll down on a phone
Many thanks for your reply I'm sorry your gp felt he had a right to do that to you in America they 1st learn first do no harm in think no discussing withdrawing a inhaler breaks that code but I'm glad it turged out ok for you appantly the seretide steriod inhaler I'm on wasn't meant for someone with copd but for asthma eek !!!!!
I believe a lot of folks with copd use the same inhalers as those with asthma and other lung diseases.
Take care. P
Yes possibly but my doctor actually told me the one I'm on wasn't supossed to be for copd I've been on seretide 9 yrs I'm not sure if I will change over yet I've got a lot to think about
Hi, I’m stage 3 emphysema I think, I can’t be sure because I’ve never been told. I was diagnosed 10 years ago and had to try every single inhaler available, I had horrible reactions to all of them, I would get shaky, pains in my chest and left arm, racing heart and severe panic attacks. I was told I had to pick one if I wanted to breathe so I tried the lowest dose of Seretide 50 once a day which I’ve been on ever since. Last year my nurse told me it’s the wrong inhaler to be using for emphysema and I could choose another one. She gave me a list to choose from but like you I’m scared to try a different one. I’m sure the Seretide 50 helps because if I don’t take it I’m really struggling. The thought of having to try all the different inhalers again frightens me so for me it’s rather the devil I know.
Exactly what I thought they donthink seem to realise how we feel I'm on 250 I don't know what to do they have been wrong up to now haven't they !!!!! I don't trust them now I feel alone
Like you I don’t know what to do either....I suppose I will eventually have to try one or more likely all of them. How long does one try a new inhaler for before improvements are noticed?
I don't know I'm on my own so do not want any reactions as I'm over an hour away from a hospital if i have a side effect after docs have closed I'm such a scaredy cat now anything worries me why can't something just do what it's supossed to do without side effects which scare me more than this rotten disease
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