Thanks to Jaycee and Van

Hi Flossie, lovely to hear from you. Do you see a respiratory nurse? If so, she may be the best person to pester re your inhaler. If not, stick it out with your GP/practice nurse. We need this info to fight for what we need, which is why I join my thanks with yours to Vanessa, who keeps on surprising me with her knowledge. Keep in touch and let us know how you get on.

Jacee

xx

Hi again

Just to make sure you have the ammunition you need, I emailed my respiratory nurse last year to say I had read a lot about inhalers and found that, like me, most people with emphysema often do not respond well to specific asthma treatments like the Beta2 agonists (such as ventolin).  It was suggested in several articles that an anticholinegic called Tiotropium, or Spiriva, was more suitable for shortness of breath caused by COPD.  The extra plus appears to be that although it is slow acting (it takes 30 minutes to work) it has virtually no side effects and needs to be taken only once a day.   However, my GP nurse said it was far too expensive to be prescribed for me and gave me a ventolin blue inhaler. My respiratory nurse agreed with me and replied that the advantages of this drug are that it works better, lasts longer, and may have an impact on flare ups (exacerbations).  This is what I now take and it is marvellous.

Jacee

xx

Hi Flossie -- it's great to hear from you and I'm so glad you decided to talk to us gals! Do stick to your guns with the doc, and do let us know how you get on and keep right on posting! We want to hear from you! Also remember that neither myself or Jacee had a clue about any of this until we got it. It's amazing how quick you learn when your health depends on it. Hope this finds you well and enjoying the current blue skies and sunshine, Vanessa x

Hi to you both..

Many thanks for your replies. I dont have a respiratory nurse but I may ask why I haven't been offered one! I am Mod COPD (49%)

Jaycee, I will go well armed with your info and let you know how I get on. I recently had to go for a chest infection and was presecribed Steriods and Anti-bio's. I was, depsite saying yet again I don't use the blue inhalor , prescribed a new blue one (as mine was getting old so the nurse said!). I felt so weak at the time I had no strengh to argue but I did make an appt to review my meds while I was there.

I feel much better now (and slightly cross at being fobbed off again!!).

The weather is fantastic ... 8) really looking foward to this weekend - wishing you both a lovely one xxx

Hi Flossie (love that name!),

Just to check with you before your appointment. At FEV1 49% you should be given :

Spiriva + Symbicort + Ventolin.

The 'flu vaccine each Autumn

A one off Pneumonia vaccine

You should also ask to be referred to a pulmonary rehab group, where in addition to gentle exercise you will have (weekly) one hour chats about the nature of the disease and how best to cope with it. This will be run by a respiratory nurse who will check your meds and generally advise you about anything you want to know or are unsure about.

Best wishes, Vanessa

PS. oops! I forgot to include that you should ask for (if not already given) a weeks supply of anti biotics and steroids which you keep in the cupboard at home ready to self administer at the first sign of an exacerbation ( chest infection / bad cough with increased or coloured sputum / high temperature etc.) This is because we can lose more lung function with each infection and it is important therefor to stop any infection in its tracks.

Probably the main thing is to push for Pulmonary Rehab -- that way if your doc doesn't do all this, then the respiratory nurse will. Also, don't know if you are much into reading, but if you are then there are numerous COPD books aimed at informing patients and they will give you all the medical advice and lifestyle advice you could need. Just check it out on Amazon or similar. Van x

PPS. Your Doc is not necessarily a bad Doc -- many don't have a clue about how to handle COPD . My GP admitted as much but was fine for me to 'educate' her as we went along. I found out about vaccinations, pulmonary rehab and various medications from books and from the governments NICE guielines on COPD and then passed the info on to her, which she checked and then acted upon. This is a life limiting, progressive disease and needs to be taken very seriously. Good Luck, Vanessa

Hi Flossie (and anyone else reading this),

I agree with Van that a pulmonary rehab group is good, though not all are run the same way and mine certainly did not have one hour chats - it had exercise and visiting speakers, no discussion of meds as we came from different areas and had different Drs and Respiratory nurses. Also, only a respiratory nurse could refer patients to the group I attended.

I also agree that most GPs don't have much knowledge about COPD. The problem is that this is an umbrella term for several different diseases of the lungs, including asthma, bronchial hyperresponsiveness (which is a characteristic of asthma), emphysema, chronic bronchitis, occupational exposure to pollutants, repeated lung infections, cystic fibrosis, genetic factors (there is mounting evidence that there may be an autoimmune component to COPD) and of course smoking is the biggest cause. This is why there are so many different treatments and inhalers and not all of them suit everyone (which is why Vanessa uses ventolin and Symbicort and I don't). I also have the flu vaccine each autumn but receive the pneumonia vaccine every two years. Again, this will vary depending on each individual's case.

I think the most important thing is to know what's out there, what it is for and how it works, then you can check what is best for you (as I found, research shows that ventolin rarely works for people with emphysema but is excellent for asthmatics). The best source of info and support is a respiratory nurse so do push to see the one at your local hospital and GOOD LUCK!!

Jacee

xx.

Hi, I am a chronic bronchial asthmatic from birth ( 57 now ) from when asthma was not common. Now turned to COPD as of three years ago. As you may have guessed I have never smoked having always struggled to for breath anyway. Drugs have become a lot better as time has gone on but ventolin now has no effect on my ability to breathe. Just stumbled upon this web site and found it very interesting, I do not condemn anyone who has this problem due to smoking but wish the medical professionial people had a bit more understanding of how life is like for us. I have had to give demonstrations of how to take an inhaler every time I have had a review, I have been using inhalors for 30 years now and know how to make the best use of them !

I am now 47% lung capacity and have always realised that I have to keep whatever I have left in the best possible condition. my medical practice is now far more up to speed with these condtions but it is a bit late for me, thankfully I am still able to work and bless each day I wake up able to breathe easily and walk the dog !

Keep as well as you can all and thanks for reading

David

Hi David, thanks for your input. We don't seem to have many copders with asthma (or not posting anyway) and it is always good to hear from someone who may have a different perspective. It's good that you can educate the medics but really sad that you need to. However, it's understandable that you will have amassed a lot of knowledge and experience over 30 years - a long time to have any condition. I currently have 22% lung capacity but must take responsibility as a lifelong smoker. I remember when I first started and doctors used to recommend smoking as a treatment for bad nerves! It is good you can still work, and that you can walk your dog. Any tips or advice you can offer about inhalers or managing the condition would be very useful to others. I hope you continue to stay as well as you can and that we hear from you again.

Jacee