S.O.B

Hi people ,

I'm New to copd , diagnosed as mild month ago , however as much as my resp nurse and Dr say I should be able to live a normal life and exercise I find that simply walking upstairs to bathroom leaves me gasping. I've had lots of advice from you lovely people on here and so thought I'd ask you all , when you were first diagnosed how long did it take to get meds right ? I've had mine changed yesterday ( steroid puffer ) and gasping more than ever , was told to give it chance which I will if I know it'll be worth it. Am on long waiting list for pulmonary rehab.

Thanks Annie x

18 Replies

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  • I can't advise on the inhaler but you don't have to wait for the rehab classes. There are YouTube videos which are very helpful and the BLF do an exercise DVD. Get yourself started slow and steady at first and you will find that your fitness levels can quickly improve so that doing what you want to do is not as taxing.

  • Thankyou, will order DVD tonight and check out YouTube, my impatience is not helping my cause , but do want to reclaim my life, might not have been exciting but it was mine x

  • Done ! Ordered couple of booklets to, holiday one and information for friends and family x

  • They really do have some good stuff. :) Report back and let us know how you are doing.

  • Will do , thanks for your help

  • Steroid inhalers are sometimes used in mild COPD and some who are very severe do not use them. We are all so different. :)

  • It took about a year before my nice but dim respiratory nurse got my inhaler regime right, mainly because she wasn't clear in her instructions at the end of each session. I would go away and do what I thought she had told me to, only to find that she had thought she had told me something else. She has now been promoted to Practice Manager and we have a much more clued up respiratory nurse. Looking forward to seeing her again later this month.

  • That sounds hopeful Ergendi , looks like I'm panicking to soon , fingers crossed for us x

  • This may not alleviate your impatience Annie, but steroid inhalers usually do take a while to work - often up to 3 weeks. So don't despair if it's not happening right away but do go back to your doctor in a a couple of weeks if there's no change. Is your inhaler a combination one with a bronchodilator in it along with the steroid? Do you have ventolin and if so is it not helping? There is lots to take on board when you're newly diagnosed but you'll get there and you will be able to live a decent life.

  • Morning O2Trees, yes powdery inhaler is combination one ,the other one is blue salamol reliever , which doesn't help much but is a bit like a comfort blanket ! Lots of questions that really can only be answered by someone who's been there . I find my throat gets very dry as well, but at the moment have just General feeling of being unwell and ......... feeling sorry for myself. Still work full time but realistically thinking part time would be easier so I would have more energy for excersise. Thanks for taking time to reply much appreciated x

  • Hi I was told to take blue inhaler 10 mins befor other inhalers as it opens up your air ways. Also do you have a spacer or a areochamber you can get one from your GP as if you take your blue inhaler through them you get mor of the medication.

  • Hi Annie

    Thats a difficult one to answer as the only medication thats helped me this week was to stop smoking. As not only was I breathless are little exercise but I had numerous chest infections ,coughs and mucus suffocation. For want of a better word .

  • Hello there I was told 7 years ago I had emphysema in my upper lungs and that it had probably been there since I smoked (I gave up over 20 years ago) this year though I really thought it had worsened, only following reversibility tests it showed it was asthma and I was put on a steroid inhaler I was about to go back after my second week when slowly each day I noticed an improvement so persevere, for me as Notobad says a spacer or aerochamber from your gp or chemist (£8.00) ish really helps reduce dry throat and potentially any likelyhood of thrush, that and teeth brushing/mouth rinsing straight after use. I have also been told by more than one professional that if I do not smoke , exercise and look after myself I should live a normal life, from personal experience stress and anxiety can play a massive role in breathing and more accurately shortness of breath, especially when focusing on it constantly like we do when we are new to all this, as does over breathing which causes an imbalance of oxygen and carbon dioxide, I see you are going to use the breathing videos available all good stuff, PS you are in the best place here. All the best.

  • Hi Alauralane, 4 weeks ago I was on holiday , yes a bit sob if walking up a shallow incline also swam 2 widths and again puffy, walked all round markets and along sea ftont ,up aeroplane steps when flying home carrying holdall, since starting inhalers I have gone down hill so fast I can't get to toilet without going upstairs on all 4s , or walk from living room to kitchen, I am sob constantly even resting , i returned to Drs but have been given yet another stronger inhaler which I fear may see me off ! I'm beginning to wonder what damage these inhalers are doing , and think I may stop them and go to A n E over weekend, I'm at my wits end ! my decline over past 3 weeks has been phenomenal x

  • Hello there so sorry I did not notice your reply, I hear you are having a difficult time and the constant SOB makes this very real and very scarey, I am interested to know has your gp done a spirometry test even your peek flow readings? as these would be a true indication of what is happening with your lung function, you sound unhappy with your care understandably if you feel fobbed off, firstly my health care practitioner thought I had a worsening of my COPD and I was really worried constant SOB etc, when I finally got my spirometry test I had to have a second test called reversibility after taking ventolin and it showed my symptoms were asthma and as I said in my previous post my anxiety was adding quite a bit to my symptoms because as soon as the doctor told me it was asthma bingo my SOB was not as bad, the link between fear and anxiety and breathing difficulties is well documented, there are several videos on you tube about over breathing and SOB. Steroid inhalers have been used for around 50 years and have been proven very safe, I too was so concerned about taking them I did a phenomenal amount of medical research, this showed me that my fears were very much out of proportion with the reality, the tiny quantity of steroid inhaled about only 10% of the dose makes it into your lungs, (the reason it is so important to rinse your mouth and use a spacer). In your lungs the steroids do not pass through into the bloodstream, they stay where they are supposed to be, much better for you than oral steroids that do have some horrid side effects (this I know from personal experience), in reality it was about 4 weeks till they seemed to be doing their job, you could have had something trigger your lung inflammation while you were on holiday and need to get this under control before you feel better. All the very best and feel better soon.

  • Hello Annie

    What was the old inhaler? What is the dry powder inhaler replacement?

    The dry throat will be from the powder inhaler and AFAIK there isn't a spacer for that, but there are plenty of alternatives.

  • Hi Soulsaver , New inhaler contains steroids as well as long acting stuff , not sure what they are exactly only know they don't help x

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