Hi Sohara,I was told recently that each time I have an exasperation I wont get back to where I was before I had it.What do you think?Bengunn

[Bengunn]

your opinion always worth a listen.

[Mavary]

Hi Begunn. I wasn't sure of what you are saying. X

[Bengunn]

Hi Mavary,Let me try and clarify,when I get flare up or exacerbation of my emphysema and I have had quite a few through 2013 after I get over it I always feel that my general condition is worse and I can't get back to where I was before I had the flare up.bengunn.xxx.

[Sohara]

This is only my opinion Begunn, its so hard to gauge it really.....in one way its true..thats why its so important to clear up the exacerbation as quickly as possible, but more importantly I have found out is to make sure it has totally gone before you stop taking your ab's . But that may not be as fearsome as it appears. I actually think that since I have learned so much about my condition over the past 3 or 4 years I have actually improved my state of health and lung condition HUGELY. I cannot give you figures of my exact FEV etc as I never had it taken until a few years ago, and by then I was severe COPD, but I just 'KNOW' in myself I have improved in the past few years.. In fact a friend mentioned this to me the other day she said then when we were out before, I always walked breathing with my mouth open and it made me out of breathe if I spoke to her as we walked. and lately she had noticed I did not do this any more ( I had not been aware that I did this).

I don't believe I will ever get back to stage 2 COPD but if I can stay at stage 3 then I will be happy, as this for me is not too bad. As I can live a happy life like this...OK I cannot dance anymore which I totally love to do, and of course there are many other things I cannot do...but then as we get older that happens to us all .

I know I will get worse, but I just hope to make it happen slower than it was happening before I found out how to manage the illness .

Also I have reduced the number of exacerbation's I now get.( from about 6/7 a year to about 2/3 a year now) Mostly by avoiding colds

I avoid people with colds like they have the plague :)

If I am in a shop and someone sneezes I walk away as quickly as possible,

If I have been near a person who has a cold I use 'First Defence' a BRILLIANT product that has saved me from many colds, especially after flying

I try to build my immunity up by eating well and takings some vitamins etc

I hope this has helped Beguun

One thing is true we will all die one day, but hey lets try to make that day as far away for us as possible

Love Sohara

[music in reply to Sohara]

hi sohara, may i ask what is first defence and why it can help after flying and where you can buy this has never heard of this.

you seem to be doing ok with severe stage copd just hope i can when i get to that stage has moderate at the moment..good luck best wishes Music

[Sohara in reply to music]

First Defence is a product by Vicks.( can buy it in any chemist).its a nose spray that if you use at the very first sign of a cold...and it has to be the very first sign, then it stops you getting the cold. I have used it now for a few years..even my VERY skeptical sons have used it and it does really work. Why I like it mostly is because its a spray, you don't have to take anything, so it doesn't really matter if you use it and did not have the cold coming

I 'think' it acts by attaching itself to the cold virus somehow and then when you do blow your nose it comes out and so the cold does not get going. Not sure if that is how it works all I know is that it works

Why I use it before and perhaps after a flight, is that there always seems to be someone on the plane with something or another, and this helps to stop you getting it, as the air just circulates on a plane.

I hope it works for you, but everyone I have told about this product also now swears by it

Before I used it every cold I had went on to be a chest infection which needed antibiotics to cure it, so this has been a major cause of my reduced attacks

Good luck

Sohara

[Dedalus in reply to Sohara]

As I am struggling with finding an inhaler that suits me (I have tried 4 different ones up to now and none are any good (one could negatively affect the kidneys, and as I have only 1 I don't want to take the risk, and the other 3 are corticosteroidal(?) type which badly affect my sleep). May I ask what meds you are on, as it sounds as though they perfectly suit your condition. Thank you

[Sohara in reply to Dedalus]

Dedalus do you mean me here? if so I am on Symbicort 200 one puff twice a day....spiriva.....2 puffs of one tablet in the handihaler once a day. 2 x 2 Mucodyne (carbocisteine) tabs a day....this is what I take every day.

My antibiotics I have by me are:

I have Amoxicillin satchets 2 x 3g to be taken until the infection clears

or if they dont work I can take

Co- amoxiclav ( augmentin) to be taken until infection clears

or if all that fails I have Prednisolone Tabs ( which I have only ever used once when I had pneumonia

I also have but hardly ever use . some saline stuff to nebulise & a bricanyl inhaler I never use

You should see my cupboard.......its practically a pharmacy !!!!!

But I am lucky really as mostly each day I just use the 2 diff inhalers & the mucodyne

Hope that helped you

Love Sohara

[Dedalus in reply to Sohara]

Thank you for your detailed reply Sohara - it did help - I have just been prescribed Symbicort 200 but haven't been able to use it yet, as I have a chest infection and didn't want to start new meds as I wouldn't have known whether any side effects, if any, were due to the Symbicort, or just as a result of the chest infection. I use the Ventolin as and when I feel particularly breathless, but that's it currently.

I am just hoping that when I start the Symbicort it will not have the same side effects as the Seretide, otherwise it'll be back to the drawing board.

[siestasue in reply to Dedalus]

Hi Dedalus, I am a new member and your post on finding an inhaler interests me as l am in the same position. I have been on Atrovent and Sabutamol for 2 years, but recently the nurse felt l needed something extra. I was on Seritide for a month but it didn't agree with me. Then I had Symbicort which was no help whatsoever. I have been taking Oxis and Qvar for over a month again I feel no benefit from them. Could l ask your experiences? Also your comment about affecting your sleep as recently l have been having very vivid slightly unnerving dreams. I never gave a thought to them being linked to inhaler.

[Dedalus in reply to siestasue]

Thank you for your reply - I was firstly given Spiriva (this is not good for the kidneys so I told the GP I did not want to take it). I was then given the higher dose of Seretide, which affected my sleep badly (kept waking up and couldn't get back to sleep) so they prescribed the lower dose, but same result. I have now been prescribed Symbicort, but haven't yet started it due to a lung infection I have (didn't want to take new medication as I wouldn't be sure what was affecting me - illness or meds). I'll try the Symbicort when I'm better, and if that has side effects it'll be back to the drawing board (will keep in mind the names of yours - i.e. Oxis and Qvar). Thank you - thought it was just me that the inhalers didn't agree with. Hope your probs clear up soon (the dreams may be a phase you're going through, hopefully). Take care, and if there is anything worth reporting in the future I'll let you know.

[siestasue in reply to Dedalus]

Good to hear from you. You are obviously much more informed than me about these drugs, e.g. Spririva is not good for kidneys. I hope that you have more luck with Symbicort . What works for one doesn't necessarily work another. Thanks for making me realise that l wasn't the only one who had tried 4 different inhalers with no advantage. So I don't feel so bad now about going back and saying these aren't any good either. I would like to hear how you get on like me looking for the " perfect inhaler ". Sue

[Dedalus in reply to siestasue]

I'll certainly let you know if I find an inhaler that suits me Sue - I will probably start trialling the Symbicort next week (fingers crossed it will be the one, but if not then on to the next one!!). Thanks again for your very helpful input - as you say it's good to know that someone else is having probs finding a suitable inhaler. Kind regards Pauline

[music in reply to Sohara]

thanks for this sohara will try this and you are so right about colds on a plane

[Bengunn in reply to Sohara]

Hi Sohara,Thanks for the reply which was constructive .positive,and helpful.I will certainly try the medication you advised.I have two daughters who are teachers and two grandsons of school age and they pick up bugs all the time so i need some protection.I love them to bits and dont want to stop them visiting.I have only been out 4 times since October 1st as the cold weather does'nt suit me at all,can't wait for spring,feels like I've been in hibernation. Thanks again,much love.Bengunn.

[libby7827]

Hi Bengunn, I've found that if I have an infection that goes away that is easily treated at home, things eventually get back to "normal". However, if I have one that gets worse and necessitates a hospital stay, then it takes weeks to feel normal again, and I believe I never get back quite to where I was. I'm end stage so I suppose any tiny worsening is very noticeable. Libby x

[Bengunn in reply to libby7827]

Hi Lib,Just stepped out of bathroom tried a power shower in an hour but struggled and I will have to get a new backwasher,she will have to go she's too short ,only four feet six, ha,ha.Thanks for reply lib I am glad someone else notices the slight changes when you get over a flare up.I don't know what stage I am at but according to my file it is severe.I have never recovered properly after having a punctured lung and subsequent pneumothorax last spring,the consultant would'nt let me go home unless I had oxygen at home,I am on 4 lpm for 15 hours ambulatory when I go out so I think I am on the dreaded downward spiral.Love Bengunn xxx.

[onamission]

I agree with you Bengunn when I have a flair up I never make a 100% recovery when I was first diagnosed the first 3 years I avoided the flu and my level never moved I'm now level 4 and just had flu all over Christmas.

[Bengunn in reply to onamission]

Hi Onamission.Thanks for reply.What condition do you have,and why do you think you have moved to level 4.Give me some history if you don't mind.Bengunn.

[onamission in reply to Bengunn]

Now this is a bit complicated so I will try to explain every year you go to see the nurse at the GP's she will get you to blow in a tube and have a oxygen monitor on your finger at the same time. You blow as hard as you can { I go blue in the face at this stage and sound like I've run a marathon } this is repeated 3 times it is then calculated I stayed the same level for 3 years but then I got the flue and is was that set me back.

[Bengunn in reply to onamission]

Hi.Onamission.Have you never had a flu jab.Bengunn.

[onamission in reply to Bengunn]

Hi Bengunn yes I have flu jabs every year.

[ptliverpool in reply to onamission]

I was also wondering how people know what stage they are at,this 1,2,3,4 is hard to follow. I thought there was only mild,moderate and severe. How do people know they are end stage?

[libby7827 in reply to ptliverpool]

There is a table on page 15 of the following link which should be helpful

nice.org.uk/nicemedia/live/...

My lung function is below 20% and my consultant referred to me a couple of years ago as end stage, which is how I know! Libby x

[ptliverpool in reply to libby7827]

Thanks libby7827 Glad to know I am still at the mild stage and long may it continue evn though my consultant said mild/moderate but that was just after an exasperation.