copd initial treatment after diagnosis HELP!

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After about 4 years of continual cough and chest infections after having a spirometry test I was finally diagnosed as having COPD 4 years ago and was put on the combivent inhaler until it was discontinued last year when it was replaced with salbutamol inhaler and atrovent inhaler other than this I have not had any other tests other than a spirometry approx. every 14 months despite having at least 3 severe chest infections every year which last for about 5 to 6 weeks this year has been particularly bad for me over the past nine weeks I have had 2 chest infections plus suspected swine flu and at present have a chest infection which is the worst ever I get breathless just trying to do the simplist thing and cannot walk very far even though the doctor has put me on a 5 day course of steroids for the first time plus antibiotics I still do not feel any better. and I coughonstantly day & night.I have been in bed for over a week and still not able to do anything.

After reading other sufferers experiences there seems to be other tests and medication that I do not have any knowledge of and I notice some have attended the hospital or chest clinic but my doctor has never mentioned any of this to me, apart from the inhalers she just gives me antibiotics each time she does not even inform me of my spirometry results I was wondering if I should be pushing for more tests etc especially has my condition is worsening i have been quite frightened this time as I have really struggled for breathe and after reading others experiences feel a bit abandoned by my doctor do you think I have cause for concern? I would really appreciate any advice on this matter.

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  • Posted

    Hi Sue, I was diagnosed by spirometry Feb this year. Having never heard of COPD and being shocked at the news that i had \"the lungs of an 83 yr old\" i read books on the subject (eg copd for dummies) and researched it on the web. My GP initially gave me various inhalers, steroids and anti biotics and made an appointment for me to have a chest xray and chat with the pulmonologist at the hospital. This was to confirm the GP diagnosis and to rule out any other lung or heart problems. I also had an ECG at the local surgery. I gave up smoking the day i was diagnosed, but was still full of phlegm and constantly coughing and exhausted. Having read up on the subject and while waiting for my hospital appointment, i went back to my GP and politely but firmly explained that i wanted to fight this thing as best i could by working with my GP and being as informed as possible. I said that i had read about FEV numbers etc. and wanted to know mine so i knew where i stood and could monitor my progress or deterioration from now on. I was upset to learn that my FEV1 was just 29% but still happier to know the truth and work with it. I was particularly concerned as my daughter was only 14 and i am recently widowed, and determined to be around for her as long as possible.

    Things have looked up since then! My x ray confirmed COPD and assured me there were no secondary problems such as tumors etc. The pulmonologist said to give up my inhalers except for the ventolin, and put me instead on \"Spiriva\" a dry powder once daily inhaler - this has really dried the phlegm up and i rarely cough these days! I was also given my second spirometry test at the hospital -this was 10 weeks after my initial diagnosis and having cleared up the chest infection and stopped smoking - it was FEV1 40% , a great improvement!

    My next step will be Pulmonary rehabilitation classes -these were arranged for after my x ray, but there was a huge waiting list so mine wont start until 12th December, i am so looking forward to them. Also my weight has increased which adds to breathing problems so im tackling that now. My bedroom is like mission control with charts on the wall showing FEV1, FVC, weekly weight, how far ive walked and how frequently etc. Oh, i also purchased a fingertip pulse oxymeter so i can monitor my heart rate and blood oxygen levels when im walking. This gave me the confidence to exercise a little even though im breathless as i can watch that i dont overdo things. I quickly checked into this site just now as i was about to search out and buy a Flutter Valve or Acapella before the winter starts. These gadgets are airway agitators and are for clearing the mucus from your lungs, thus making breathing easier and lessening the chance of pneumonia etc as there is less phlegm for germs to make themselves at home in. I dont have phlegm now but with winter coming the least cold can soon get it going so this year i will be prepared.

    To sum up then Sue, if i were in your shoes i would see my GP as soon as possible and ask for your FEVI number and write it down there and then (you are entitled to know this by law). Explain how you feel and ask about getting a chest xray, and ask about pulmonary rehabilitation classes in your area - again we are entitled to these and in addition to exercise they assess your condition, educate you regarding all aspects of copd and give you the opportunity of mixing with others who have the same disease and can exchange experiences and tips. Incidentally the governments \"NICE\" guidelines for the treatment of COPD are on the net and you can print the whole booklet out - i did - then you will see exactly what you should be getting from your GP, hospital etc.

    Most of all Sue, educate yourself about this disease, know all that you can ask or expect from the NHS- they really are trying to fight this too- and look for ways of improving life for yourself too. Remember to go get your flu

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  • Posted

    Hi Vanessa

    Thank you for your reply sorry I have only just got back to you but not been at all well this week. I did attend the doctors on Tuesday ( BEFORE READING YOUR REPLY UNFORTUNATELY) as despite having a course of 500mg antibiotics and a short course of steroids my condition had not improved .

    She was amazed that the steroids had been ineffective and stunned and how breathless I was she has prescribed a further course of antbiotics and I attended the chest clinic yesterday for a chest xray ( I have had 2 of these in the past which have been ok).

    I asked the results of my spirometry tests and she gave me the last 2 results the first one she said was 1.31 and the last one 1.71 which she seemed quite happy with as she said it confirmed the inhalers were helping, as these results are not in % form I do not know how they relate to other peoples results on the site so I am still unsure of the extent of my condition.

    I did say that I thought my breathing had deteriorated rapidly over the past 6 months (his may be due to having 3 really severe exacerbations recently) I expected my next spirometry test results would reflect this and I was anxious to know, unfortunately the spirometry test was due 2 weeks from now but because of my chest infection it has had to be cancelled for at least 2 months, she did say if there next result had decreased she would refer me to the chest clinic.

    I have had the vaccinations you mentioned and I am reading everything I can about COPD in order to be able to ask many more questions when I see the doctor again next week as I know that my condition has deteriorated over the past 12 months.

    I know you had lots more test when you were first diagnosed do you think this was because your results were more severe than mine ? as mine are not in % form it is difficult to compere but I am pleased you are doing well which is good news and thank you so much for you help.

    Sue

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  • Posted

    Hiya, This could have been my story but I was very fortunate in being referred to my local hospital and having a respiratory specialist nurse, who ensured I had Spiriva (I researched the net and found this is the most effective inhaler for COPD, some of the others can actually make things worse as they are for Asthma sufferers). Since then I have attended at the exercise classes (recommended) and been prescribed oxygen therapy as my breathlessness also got worse and my oxygen levels dropped. My advice? Research your condition so that YOU become the expert then you will know what questions to ask and what is best for you, what you are entitled to and what should be happening. Also, keep positive, your quality of life is what you make it. I wish you luck.

    Janet :D

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  • Posted

    Jacee,

    it's funny you should say that about inhalers as I find that there are times when I use mine and my breathing is no better after using them.

    You think Spiriva is the best to use?

    Tessa

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  • Posted

    Hi there, This very much depends on what medical condition you have (and maybe varies with individuals) but I found the Ventolin (via inhaler or via nebuliser) had no effect on my breathing (although had some annoying side effects) and research showed me that Seretide contains steroids, which caused me some problems. Also, whilst research shows Seretide can reduce the number of chest infections we succumb to, it has a very common side effect of increasing the number of reported colds  and can cause pneumonia and lung infections in COPD patients!! 

    I have read a lot about inhalers (on trusted sites, run by well founded organisations like the British Lung Foundation and its American equivalent) and found that, like me, most people with emphysema often do not respond well to specific asthma treatments.  It was suggested in several articles that an anticholinegic called Altrovent was more suitable for breathlessness caused by COPD.  About 4 or so years ago the company brought out a newer, better acting version of it, called Tiotropium, or Spiriva. The advantages of this drug are that it works better, lasts longer, and may have an impact on flare ups (exacerbations).  The extra plus appears to be that although it is slow acting (it takes 30 minutes to work) it has virtually no side effects. However, anyone reading this, please use your common sense and talk to your GP, Consultant or Nurse before changing any treatments - I did. I had long conversations via email with my excellent and ever helpful Respiratory Nurse. Hope this makes sense. :wink:

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  • Posted

    Thanks Jaycee, that is very informative. My surgery pharmacist suggested I try it, but never did. Thinking better the devil you know than the one you dont.

    Plus I have Bronchiectasis as well with haemoptysis. So I am careful what I inhale as I don't want to set off the bleeding. But I'm thinking of giving this a try. Will talk to my consultant about this.

    Tessa

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  • Posted

    Hiya Tessa, I also have haemoptysis and have not encountered any problems using Spiriva but you are right to check it out and be careful. As I said in reply to an earlier post, we really do need to become the experts on our own conditions so that we can ensure we get the best available treatments. I am also lucky that my respiratory nurse is involved in a lot of research projects and we have an excellent relationship she what she learns she passes on to me, that's how I can be more knowledgeable about my condition and the best inhalers/medication for me. :wink:
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  • Posted

    Hi,

    Went to my doctor yesterday because of increasing breathing difficuty.

    Too late in the day to do main tests so was prescribed Atrovent inhaler for Copd. I am to have tests next week.

    Problem since taking inhaler, I am now suffering palpitations & fast heart rate & have been unable to sleep.

    Has anyone else had this reaction?

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  • Posted

    Hiya, I had same reaction and went back to talk to respiratory nurse after doing my own research. Have you seen my early post to Tessa about this subject? As I said, individuals vary but Spiriva seems to be the best inhaler for COPD, though it acts over a 24 hour time period and does not work for quick relief. Hope you get sorted soon.

    Jacee

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  • Posted

    I dont know how this Forum work but was Diagnozied Monday with Empysema. I am 57 years old. My lung readings were 70 - 80%. I.ve already received an inhaler that you put a litlle pill in and crush it. I only get out of breath with fairly strenous execrcises and did a 7 km Mountain climbing trip about 2 months back. I never new or realized I'm out of breath. I smoked on and off for just about whole my life but lateley only a cigar here and there which I obviously stopped immediately. Where to know? I love the outdoors and live to be there. How quick will this progress? I will retire in 3 years (If I'm still alive) IAnd really dont know how to plan from here. mI was busy buying a hease at Seaside but if I go fast my wife will be far from our children and her grandchildren. Please help.

     

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