Have not posted in a long time. Was diagnosed with emphysema about 4 years ago. I think I'm Stage 2. I'm 68, quit smoking 25 years ago, but thinking back I showed signs of breathing issues in my mid-30s. Here's the thing: I was immediately given 3 inhalers upon diagnosis and used them religiously until about 3 months ago. I felt they never, ever helped my breathing one bit. Same with prednisone, which I took for a short while two summers ago until my lung doc told me to quit them. I've actually felt pretty good these last few months with no inhalers, until the past week or so. But I still am not using them because, as I said, they have never helped. Have not seen lung doc for well over a year, because I have not had a great need. I just get typical SOB. Pretty much most of the time. Sometimes just a little, sometimes more. I'm a religious walker. 3 miles a day, 7 days a week unless I feel especially poorly, which is seldom. I guess my question is: Have others found inhalers to be ineffective? And have you just given up using them? Thanks
I've quit inhalers -- anyone else? - Lung Conditions C...
I've quit inhalers -- anyone else?
No my lungs let me know even when the inhaler has run out and I hadn't noticed.
During summer months I tend to use half the dose of the steroid inhaler, but winter months full dose, I pretty well know without my inhalers I would be in real trouble.
I hope you remain stable and for sure if you notice a deterioration in your breathing the inhaler meds can help used in the right way and during winter months can go a long way toward preventing an exacerbation.
Best wishes
I gave up the steroid inhaler a year ago, after 7/8 infections that year and I haven’t had an infection since. There could of course be other reasons for that. I still use a non-steroidal inhaler, without which I am short of breath. As everyone says “everyone’s different”.
Hi i get a lot of mouth ulsers and i am wondering if they could be caused by the steroid inhakers i use
Don’t know, sorry. I never had mouth ulcers.
Do you rinse your mouth after taking the inhalers?
Hi, I used to have a lot of ulcers and sore throat due to steroid inhaler but since using a spacer haven’t had any.
Looking at your previous posts I can honestly say I wish I had your levels and exercise tolerance let’s hope you never get any worse .
To a lot of people these inhalers are a lifeline and it may not be the best advice to say they never ever helped especially as we are now coming up to the hardest time of year
. Most of us I’m sure at certain times of year could stop some of our medication but as you are probably finding out now maybe you should not have stopped using your inhalers before speaking to a qualified person .
#Rich1957 I'm sorry if I seemed to suggest others might stop using their inhalers. I looked over my post and I didn't see that that I indicated that. I was just saying they have never helped me, and that was after 4 years of using them every day as prescribed. I don't feel any better not using them; I just don't feel any worse. Let me assure you, I feel my emphysema every minute of every day. I realized that not all of us can walk 3 miles, but some of us can. I do it because that is what they say is the best medicine. It's not especially easy for me. I belong to some other groups as well, and the level of exercise that some can do blows my mind. I have lost friends because of this disease, and I am unable to do many of the things that I once loved. I hope you feel better and that some day there might be something that resembles a cure for this disease.
For me just telling people that you are stoping not 1 medication but 3 is worrying as we are all different . I find it quite irresponsible to stop all 3 without seeking advice from a professional if everyone did this our hospitals would be inundated .
When my FEV 1 level was around 75 I could do almost anything and was actually window cleaning which believe me is very strenuous work . Now unfortunately my FEV 1 level is around 35 and every bit of my medication helps me get through each day positively and yes I have a couple of items I don’t think I need or don’t like taking but along with exercise I know I must to stop me from deteriorating any further. I’m also on ambulatory oxygen upon movement at a rate of 6-8 litres to stop my oxygen levels dropping into the 60s . These figures have stayed the same now for a number of years and show if I continue with the correct medication I can halt a lot of the deterioration. Obviously no two people are the same even if we have the same fev level and different things can effect us in different ways but the medication is their to help us .
I’ve been at this level 35/38 for the past 10 years and oxygen for about 4 years because I’ve done as I’m told and if I have a problem or concern I’ll talk to my specialist to see if we can find alternatives or if I actually still need them .
So to you I say get back on them and wait until you’ve spoken to your specialist you don’t realise the damage you could be doing .
I must admit it’s good to read you are brave enough to experiment as I realise now how many of us have lazy or unknowledgable doctors so reading and learning from other people’s posts has been invaluable.i now ask for the medication I need as so one else would tell me and I’m experimenting with inhaling my steroid inhaler less and seriously considering only one a day then none a day as the weather and covid risk improve. I have really bad hay fever and live by an oilseed rape farm so although I had to tell doc he now gives me antihistamines and I take half a Montelukas so hoping soon in the spring that is enough. And love your walks , I should walk more 🌻happy new spring every one
Why say that about lazy unknowledgeable doctors? You say "Many of us" (don't include me in your statement) Edited content
I assume this is purely your own opinion based on your own experiences and my suggestion would be in those circumstances to definitely change your doctor.
Not all doctors are lazy and unknowledgeable, here in UK for instance, they are laying their lives on the line to save lives.
So naturally there is bound to be those who will totally respect the medical profession. Those who have studied for years to qualify in their field. Those of us who appreciate things are very difficult at the moment with the pandemic and of course there are those who do nothing but complain.
Any how, here's to everyone around the world welcoming in better days in 2021.
May the road rise up to meet us.
May the wind be always at our back.
May the sun shine warm upon our face;
the rains fall soft upon our fields and until we meet again,
may love, understanding, Light and illumination fill our minds .
From 2021 onwards
I don’t remember saying absolutely every doctor but I have been shocked by some people and the poor treatment they have and I knew nothing about my illness so as I said due to lack of help I have found health unlocked full of wonderful helpful advice and caring people, sorry your so angry it’s lock down affecting so many as I am fortunate to not only live in the countryside but near the sea 🌊
So sorry even with your fortunate living location in the country by the sea you have such a poor opinion of your local doctors.
Perhaps a short course in empathy or a little art therapy would work wonders for those who are ill and in particular those living alone where health unlocked is so important 💖👍🏻😊
Apologies to challny for comments unrelated to your discussion topic.
Have a wonderful day and year ahead everyone.
Thank you yes it’s been depressing having 3 different people at my practice for copd be so dismissive but fortunately due to my happy personality it only hurt a short time but I am very aware of how important happiness and kind words help those who are ill and alone. Did you watch Grayson Perry the artist in tv what happiness he bought to so many people and I do recommend the late Bob Ross ( American) who still has how to paint on tv. It’s such a pleasure to watch such warm caring people bringing joy to millions in isolation 👍🏻👍🏻👌I do recommend you have a peek
The Doctor acts on the information the patient gives him, which, as I know for a fact is often very , shall we say misleading. I am 83, COPD, diabetic etc and the treatment I have had from all the NHS (including throat cancer) has been faultless. Doubtless I will upset many, but I thought HealthUnlocked was about information, but it largely consists of complaints and general moaning. If you were in America, and on ,say Trelegy Elipta,you would be PAYING $300\400 for your monthly dose. Anyway,before you put pen to paper, give a thought to all the NHS hospital staff who risk there lives daily just for you. especially those who have given their lives already. Enough said, I'd better shut up.
Oh yes I’ve had several ops and paramedics twice also very fortunate to have a small hospital with minor injuries when I smashed my toe . The underpaid front line workers are marvellous which is why we all try so hard to look after ourselves and not stretch their resources while the local practice are virtually unavailable at present. 👍🏻👍🏻 I have only met the very best in hospitals they are amazing and work so hard and yet manage to be kind and caring too . They take all the burden at the moment
May the road rise up and meet us? so long as that doesn't mean falling down on ones ass! as is usual for me 😂
Good day tom, its very slippery out today, rain, ice freezing temperatures and snow, best off indoors keeping the lungs nice and warm 
I know exercise is key in help any disease. I'm sure people should walk at there on pace. However, the key is to increase cardio insurance and build muscle strength. All of which helps with an exacerbation. I have COPD stage 2 and Sjogrens syndrome. I pray better health for all.
👍
#glenninindy, I am in no position to offer advice to anyone. I was really just asking if anyone had found that inhalers are no help, which is the case with me. I can be SOB sitting on my sofa, and my SOB is no better or worse when I walk. That, however, is not the case with all kinds of activity. Lifting heavy objects, bending over, mowing my lawn, sudden bursts of energy -- these things are far more difficult that just walking at a steady pace, on flat ground, I might add. But I have been walking for years and years, so perhaps that is the one thing to which my body has become accustomed. An interesting side note, perhaps: When I saw my GP in Oct. he arranged for me to see a neurologist next month. Last year, my pulmonologist also wanted me to see a neurologist. They did not explain why. I did visit the neurologist arranged by my lung doctor one time, but the cost of that visit was so expensive that I never went back. I simply could not afford it, and I have both Medicare and a supplemental policy. My GP assures me this new neurologist will not be so costly. I don't know why they want me to see one. Has anyone else diagnosed with emphysema been sent to see a neurologist?
You ask "Has anyone else diagnosed with emphysema been sent to see a neurologist? "
No not I, but why don't you ask your GP challny? Let us know what you find out, many thanks.
Does this shed any light on it for you: pubmed.ncbi.nlm.nih.gov/934...
Great to hear from you again. I had often wondered how things were. If inhalers and steroids are not working, (they don’t for me), makes me wonder about the original diagnosis? I shall PM you so we can a good chat about the yellow haired toddler and his tantrums.
All the best
Kate xx
PM any time ... yes, the yellow maniac on his way out
My favourite cartoon is the one of the Statue of Liberty hiding behind her plinth and peeping out: “Is he gone yet?”
Good to hear from you challny 😊
There are all sorts of inhalers and sometimes it can take time to find the right one(s). I use two inhalers, which took several months of trying others and being checked by the respiratory nurse before we settled on these: serevent (no steroid) and ventolin. My singing teacher can hear the difference when I don't use my inhalers, even though normally I don't feel much different. In the winter, I need to use ventolin more to avoid getting intercostal muscle strain and greater breathlessness.Maybe you should have a chat with your GP respiratory team about other inhalers if you are still feeling breathless and the ones you have been prescribed are not helping you.
Happy New Year, challny.
...Cor ! - your lucky to be able to get by without Inhalers and even Steroids ! ... JUST SHOWS HOW DIFFERENT WE ALL ARE .!. I COULD'NT SUVIVE WITHOUT THEM ! ..well done and a happy and good health new year !
I stopped my inhaler (Symbicort 200) about a year and a half ago. My astma is triggered by allergens aspergillis and dust. Since I quit I feel quite well. But if I get a cold or chest infection I start using it again. My immunologist (I have MBLD) advices to keep taking it once a week while COVID is around though, just so you’re set to start using regularly in case of catching the illness. Hope that helps
I have been on several different inhalers for about the last 6 years. Currently, I am on one of the newer triple therapy ones (Trimbow) and I can honestly say I could not manage without them. If I am late taking Trimbow I start to get short of breath and feel unwell. Everyone is different but I certainly get a lot of benefits from the inhalers. Good luck. John
I haven’t given up but feel they have little effect other than preventing flare ups
It’s a difficult and complicated issue .....it took ages to find a preventer that worked for me .....combined ones don’t, yet others do well on them . Serevent had a bad effect too.
I managed to wean myself off Combivent nebules.....one thing I notice now I feel the cold where as before I couldn’t stand any heat .....maybe my thyroid was affected....and I wee more !
I can’t use too much Ventolin either....it stops working .
But I live a few minutes away from and A and E and know when to get help.
Meanwhile my body has become dependent on oral steroids , so that’s a problem .
My friend needed hospital supervision, and blood tests to check if she could wean off long term oral steroids ....never ever stop suddenly without supervision .
We are all genetically different , have different lung conditions and react differently to medications .
BE CAREFUL .
Hi challny, I have bronchiectasis and find that in general inhalers just dont work for me, unless I get sob. I have Seretide and Ventolin and use them when I need to. I have spoken with the gp and the consultant and they both agreed for me to do this. We are all so different and must find what works for us x
Hi challnyWhen i was diagnosed with copd on Jan 2013, 8 years ago i was prescribed with Seretide 500 steroid inhaler also ventolin has and when inhaler
after a year i ask my GP if i could stop the seretide 500 to see if i can manage with out it and he said ok but to keep my ventolin has and when i need it.
That was 7 years ago and i have not used the seretide 500 steroid inhaler since but could not do without the ventoin also the start of this year 2020 i was prescribed Incuse ellipta powder inhaler and that has helped with my wheezing.
Just like to add i am not saying for anyone to stop medication i am just saying what worked for myself
Music
Hi, I have never noticed any improvement when using my inhalers including the Salbutamol, every time the doctor asked if I felt better using my inhalers I said no, and they would give me another to try, I have tried so many now I give up. Luckily, I only have moderate COPD, my own diagnosis, I was beginning to think the inhalers were just to prevent the breathlessness from getting worse not to improve breathing.
Hallo. I have COPD - FEV1 - 53% but I only use ventalin blue inhaler as I am worried about the side effects of long lasting steroid in halers. I obviously get out of breath on uphills etc. but I saw an advert on facebook - has anyone else used TIGERUS Tiger Milk Mushroom capsules ? I They are very expensive and I don't want to waste my money
I was so inspired by you walking 3 miles a day I’m just back from doing the same as you, must walk more and today we have winter sun ☀️ fantastic.
Hi challny, similar to you. Diagnosed with emphysema 7 years past, also asthma 3 years ago I'm 69. Quit smoking when diagnosed, although relapsed on a few occasions, mainly on holidays. But looking back as you say, around my late 30s I'm sure my breathing wasn't 100%. Have never liked the steroid inhaler(dry mouth etc.), mainly because I don't think it helps me. Was prescribed Fostair 200mcg, 4 times daily. I'm now only taking 100mcg once daily, mainly as a token gesture, will be stopping shortly. I take tiotropium(Spiriva) 15mcg. capsule once daily which I think helps. Also Ventolin in emergencies which are few and far between, thankfully. So yes, I would say steroid inhalers are of no use to me. Unfortunately still miss the fags, was a calmer more relaxed person whilst puffing away, but that's silly me! Best Wishes, Meldi.
Sounds like a mis diagnosis. In any case, it is foolhardy not to consult with your doctor before stopping, and self diagnosis has to be silly, otherwise why have doctors
So nice to see you posting again. Stay safe and strong 🐞
Im no accustomed to commenting on here but if anyone can relate to my response please do-Its been nearly 2 years since I found that my peak flow is virtually zero,but does rise to around 2oo -so must be dependent on inhaler just one or 2 puffs a day ,is this normal dont walk far should excercise more at home!!
Any positive effects (other than cost)? How's the throat clearing? Most of the inhalers we take can cause side effects like sinus problems, throat mucus etc. Is it improved since dropping the inhalers? What were you on?
I would definitely not suggest others do the same, (I'm fairly fit, mild/moderate for 10 + years and measure the effect scientifically) - but I have substituted my laba inhaler for salbutemol and after a 48 hours got rid of PND, sinus pressure and throat mucus... so clearly side effects - but I blow better with the laba.
I also used to get frozen high up peristalsis, severe bloating and nausea from Spiriva.
#Hypercat54 are you in England? Here in the U.S. our health system is reputed to be notoriously bad, mostly, I believe, because it is so expensive. As I am over 65, I am on Medicare, which seems to be pretty decent, cost-wise. I do not have a lot of experience, as I've only seen two doctors since my diagnosis 4 years ago. I was first diagnosed by my PCP, who I just picked by calling a hospital and asking to see a doctor. After a couple of visits to him, he arranged for me to see a pulmonologist. The real point I'm trying to make is that my primary doctor is a marvel. He is the kindest, most caring guy you could imagine. I don''t have to see him often because I'm only moderate and don't have extreme problems (yet). But I feel plenty crappy with moderate emphysema. This man will sometimes spend as long as 45 minutes with me, explaining everything and reassuring me. He has actually apologized to me when I tell him I'm feeling poorly, as if it's his fault. My pulmonologist is OK, but might only spend a couple of minutes with me and tell me I'm doing fine. I actually worry sometimes that my PCP might move or retire, because I could not imagine having a better doctor.
Yes I'm in the UK as most of us are here. The NHS is great and free but is under a lot of financial pressure which results in long waiting lists and only 5-10 minutes with a doctor. I know very little about the American system so can't comment on yours.
I have had very bad asthma from birth.I also studied respiratory therapy in college.
The medicines I took in the 1960’s to 1980’s they were found to have terrible side effects. (Ex:Marax)
The drugs now are no better.
Plus the treatments have stagnated the last 20 years (albuterol/Advair)
I went to the pulmonologist recently and the treatments are the same old ones. They decided to kick up my advair from 50 to 250. It did nothing- in fact I felt I was craving the medicine even more so I stopped.
It has been a month on NO meds and I feel maybe even better. Enough is enough. I keep a rescue inhaler on me for an emergency.
Your experience sounds just like mine and it can be quite depressing but your not alone by any means as a lot of patients laugh about our practice, we think they like to think they’re a little superior to us locals . So I find these days to see the funny side of there petty behaviour is the best remedy 👍🏻
No unfortunately I'm not alone. My local chemist is well aware of how bad this practice is from the comments they make. The last time I tried to see a doctor (about something different than lungs) I was only offered a telephone appointment for 5 days time. The doctor told me I really need to see a doctor and I told him I know and did try. Hopeless.
Your very lucky to have a good pharmacist and so do I as he even said if I had trouble getting my inhaler he would call on my behalf . The attitude problem hasn’t been missed by the local hospital either where the underpaid and overworked medics have a wry but witty view of how they get the patients the doctors can’t be bothered to help. Having said that there have been three brilliant and caring doctors at my practice and guess what , all women . Some of the best are now working in the thick of it all while others rest. Two being retirees and men . So let’s hope you find the help you need here the way I have 👌
Hi long time no hear. Yes I agree this probably works for you as I believe your Fev1 was 79% ish? I just used a blue one occasionally for a few years at that stage .
I have experimented cutting down and cutting out my steroid inhaler summer time but ....my Fev1 takes a serious dive!
My FEV1 was 79 percent, but that was almost a year ago. But I think there is more to breathing than just FEV1. I felt I was a C02 retainer, but my docs don't agree. I have not used a steroid inhaler since early last summer, and have quit the others since October. I don't really feel any better; I just don't feel any worse. My PCP thinks there is something else going on with me, but he didn't say what. I'm supposed to see a neurologist next month. I was diagnosed with emphysema by both my PCP and pulmonologist. I walked 3 and a half miles today without much trouble. Last night I was fairly SOB; tonight not so much. It's a strange and awful disease we have.
Hi all & a Happier New Year in advance. I have rarely posted & not for a while but Challny caught my attention. I have done exactly the same thing, given up my inhalers, although I still keep the emergency one for the rare occasions when I feel very breathless (stuck in traffic jams for instance, or after walking fast up a slope ) I am 72 and was diagnosed about 30 years ago with disguised and untreated asthma after constantly suffering severe chest pains leading to nausea and being unable to move for a while. King's College did numerous thorough tests of my heart (which is weird and arhythmic anyway) & said it was a build up of gas in my chest as I breathed strangely to kid my body there was nothing wrong. I was put on asthma medication (which caused me endless problems with thrush/candida in the early years.) I still had masses of chest infections, bronchitis etc and rarely would be well for Christmas or lots of other occasions. In 2008 I was hospitalised with pneumonia. From time to time my medication was changed, usually at the asthma nurse's suggestion, for a stronger formula. I noticed that my ability to sing was impaired - so bad for mental health - and eventually I was losing my speaking voice too, croaking. The Dr changed the medication & also, after examination, thought I should be on meds for my heart. I was referred to pulmonary and cardiac specialists. I should say that somewhere along the way - possibly two years ago now - I had the pneumonia vaccine. Since then so far I have had no more than a two day sniffle or the occasional cough but no prolonged, almost endless debilitating bronchial episodes. To my surprise the cardiac specialist thought that, since my weird heart function had kept me alive and pretty active this long , it should be left untreated but that if I was worried at any time to come in for tests. (I have done this a couple of times when I've thought my heart was bursting at night - I've had a lot of upset and stress - but, despite it appearing to try and wind itself up and then threaten to 'PING!' the tests always come out fine, confirming King's diagnosis that, despite appearances, "your heart's as strong as an ox's.") The pulmonary consultant - not the first one in the series of visits but the second or third - helpfully told me that my lung function was not at all bad & my COPD must be mild. I had been really depressed after my diagnosis in 2017 but he said, "Put it this way, in my opinion it won't be that which takes you off." A weight was taken from my shoulders & I believe these words might be usefully spoken to many a COPD patient since I think an optimistic outlook helps one tackle or manage disease. Sorry if that sounds glib - I'm sure I'm probably not a heroic sufferer at all: I just mean that there is, of course, such a strong link between physical, mental, emotional & spiritual health that our perceptions of our autonomy a propos our health or lack of it can affect the lived outcome. Basically, the diagnosis of unmendable (nah! they'll find a way like mending bike tyres !) holes in my lungs made me more ill than the holes in my lungs. I told this consultant I was considering giving up the asthma meds and he said, " By all means, give it a try. See how you get on." That was about 2 years ago & I can now sing loudlyin the shower to the terror of the dog and cats and occasional annoyance of my husband (depends what I sing!)
At the start of Covid I panicked and thought of going back on the medication but then I read somewhere that steroids made it harder to treat Covid so I didn't. I try to keep up a good level of exercise but swimming was my favourite form and I have not swum at all during Covid. I could zoom my yoga class but haven't so I try to do yoga at home. I do go for walks but these have not been very long ones recently and my New Year's resolution is to exercise more even under Covid conditions.As for the medical profession, like the rest of us they are a mixed bunch , of course. In the past some GPs have been mind-bogglingly appalling but more recently mine have been good, expecting me to have a say over what happens to my body and using a respectful and co-operative approach. I have almost always found hospital consultants to prefer this approach, to enjoy an honest discussion of the pros & cons of treatments and meds or just real or intelligent questions. They are only human after all, and you are the greatest expert on your body or health having lived with it for so long. GPs are often too rushed and either too much generalists to always give the best advice on a particular issue. A really good one will admit this and offer to find out but, of course, they tend to take a conservative approach and want to 'cover ytheir backs'. All I would say is for some people less meds are better than more. I'd agree though that no-one should suddenly stop taking meds nor seriously reduce them without informing anyone of what and why - especially if they live alone. Sorry this is so long! (Get a pneumonia jab seems to be my best tip!)
🤗
My GP believes the psychological side of COPD is a major factor. I was given a pneumonia jab when first diagnosed. I figure that was a given. I'm due for another in 2021. I have never had P and will try to avoid it. Maybe I can get that shot at the same time I get the vaccine. Fingers crossed. My docs also give me a flu shot every year.
Being stage 4 when I get up in the morning I crawl to the bathroom. I’m a disaster until I take my symbicort & Spiriva. Followed by ten other meds. Albuterol at times. When you progress you won’t be able to function without inhalers, sorry but it’sa fact!
H i challny - cor - ! you lucky person ! , - I could'nt survive without my inhalers , nebuliser machine and steroids !! ... - just shows us , how different we all are with this illness . ! - personally , I don't take much notice of this " stage" business ... no one has even mentioned it to me !, - trouble with that word - , some patients would become more worried as the number went up over a period of time !! - how many " stages " are there ? .-its not a death sentence ...- just a bloody nuisance !!.. and by whose opinion ? ! ... I said al long time ago here , - a pal of mine was told he was at the " ,last stage " of CANCER .......that was ELEVEN YEARS AGO !! .and he's still going strong - he's got more energy than I have !..... - So much for "Stages ! ... !!!, anyway , long as your getting by whatever you do regarding inhalers etc , so good luck ... were' all in it together !.
🙂
Vittorio, I'm not sure of my "stage." I think it was 2 the last time I was tested. Please don't get me wrong; I am always at least somewhat SOB, at times worse than other times. It's just that the inhalers have never seemed to give me any relief. I Even prednisone seems to do nothing. I'm not on 02 and pray that I stay that way. But my life has been negatively impacted just like everyone else with this lousy disease. Hang in there.
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