More Breathless

[PurpleAlf]

This is going to sound daft. I have been taking the Seretide 125 inhaler for 6 days now and I have a Salamol inhaler for when needed. I actually feel more out of breath than before I was diagnosed. I catch my breath when talking, I used to be able to walk for miles on the flat, now I am struggling with 20 mins. Before I really only felt breathless on a hill or several flights of stairs. It really is odd ☹️

[CDPO16]

Hi, I do wonder if the Seretide doesn't suit you. I had this prescribed 3 years ago and within a week I was far more breathless than before. It may be worth checking with your GP if another inhaler would suit you better.

[PurpleAlf in reply to CDPO16]

I was wondering the same CDPO16. Seems daft that I went with minor breathing problems and feel a lot worse 6 days later! Going to stop taking the Seretide until I see doctor on Monday and see how I feel by then. I can’t see that I can do much damage in three days especially as I have only been taking it for such a short time 😀

[Superzob in reply to PurpleAlf]

I found all aerosol inhalers to present a problem (except Ventolin, oddly enough), and finally settled on Symbicort Turbohaler, which uses a dry powder - but then some people don't get on with that, so it's a very personal issue.

[Fleurbaby]

Hi, l can talk the brass whatits off a brass monkey, as most of you can tell by my posts!lol

But, after yr or two with all these illnesses, I am slowing down, everyone (including me), have a giggle, because I mention the fact, I am not gas bagging anywhere as much as say just 6 months ago , & they will stop & think, then sort of give a sad grin??? At me & nod their heads!

I just say to them, don't worry, I have been through all the symptoms of grief etc. I love life & will fight! But, whatever happens in the future, rest assured that I have been so happy(strangely enough), with my general life! This last year! I have virtually everything I need, plus, I KNOW! People do care for me, so, I am not as scared or alone anymore!

YOU don't need to fear, you have us! Dig around you will find others to help you.

I am lucky to walk 10 or 20 feet nowadays.

[PurpleAlf in reply to Fleurbaby]

Haha, I can normally talk the hind legs of a donkey too!

[HungryHufflepuff]

Some inhalers really don’t suit us. What works really well for one person will do nothing for the next and make things worse for someone else. When I was put on Fostair last year it made me very breathless and generally very ill. I have Seretide now. It could be that whatever’s in Seretide doesn’t suit you, whereas whatever’s in Fostair (which is the same as what’s in Clenil which I had before Fostair and which also made me ill) might suit you fine.

[knitter in reply to HungryHufflepuff]

I tried Fostair and Serevent....both made me more breathless, but I was ok with Clenil apart from the nightmares.

I think it’s the bronchodilator part that didn’t suit me.

[HungryHufflepuff in reply to knitter]

Oh that’s really interesting. I used to have serevent several years ago and I was very well on it. But it was taken away and since then I’ve had an ever changing series of inhalers.

[PurpleAlf in reply to HungryHufflepuff]

Hi HungryHufflePuff, On Monday I will ask the doctor about it and ask for something else. Thank you x

[PurpleAlf in reply to knitter]

From all the replies it is obviously going to be trial and error ☹️

[knitter]

I tried Serevent years ago.....it didn’t agree with me at all.

[flicky1]

Good evening Purplealf, I find that there are external things that make me more breathless. The last couple of days I have been more breathless with increased mucous, which I put down to the cloudy skies which keep the pollution underneath. Other people's perfume is particularly irritating, especially in swimming pools. Oh, and I seem to always suffer during the weeks after Xmas. When I was first diagnosed I found this breathlessness really worrying but now I carry on with life.

Regarding Clenil, I was originally on it but it seemed to do nothing. Ventolin doesn't do much for me either - I think it is not particularly helpful for emphysema.

Around the time of slowly being diagnosed I was pretty poorly but things have levelled out now and I haven't been properly ill for about three years.

I only originally developed systems after suffering shocks in my life, which I believe weakened my immune system and I think in my case, the further shock of diagnosis contributed to a decline in my health. But since then I have been fighting back.

The current thinking now seems to be that healthy lifestyle and exercise are far more important in keeping the condition under control than medication. This mostly seems to be working for me. I have gone back to being able to walk miles again, although I do huff and puff on those hills.

Oh, and I too can talk the hind legs off a donkey, even when I am breathless.

[PurpleAlf in reply to flicky1]

Life can knock us back. I have had many struggles in life resulting in years of depression. Now things are really good and bang, along comes COPD. I am going to try three days without the Seretide and see what happens. I have the Salamol if I need it x

[Toby14]

It made me more breathless as well. I had to stop taking it too.

[Kevin01041961]

Hi I'm the same,had a chest infection last January which hasn't gone,docs tell me it's anxiety? I used to walk miles now as you say 20 mins and I'm out of puff?

[flicky1]

PurpleAlf, I hope you get this sorted when you see the doctor. Yes, COPD banged into my life too, but the positive side for you and myself is that we are still in the early stages where we can fight back so that we can carry on doing everything we want to do for, hopefully, a long time to come. Despite the COPD I am happier than I have ever been, doing many more things than I have done before. A friend of mine who has been HIV positive for many years, wrote an article "I am not my condition". This has stayed with me. I am definitely not my condition. At first I found hard because of the symptoms that invaded my body and my life, but with time I have come to accept them and thus more easily choose to ignore them as much as possible. I am always a bit breathless when walking, especially up hills, but I have only actually had to stop twice. Once was walking up a hill in the Pennines, when I was getting over an exacerbation, the other was last year when I was climbing the steps of the highest church steeple in Europe, if not the world. Both times with a rest and Ventolin (Salamol), I was able to carry on.

I will always be breathless, but I have continued to do more and more with this breathlessness and my lung capacity continues to improve, as does my quality of life.

Stay strong, keep active.

[Colin1314]

Hi . I had same trouble for 2 years.I was on the same inhalers. Also had anxiety aswell walking was a nightmare for getting out of breath.saw my doctor 5 weeks ago and he put me on trimbow triple inhaler , took salbutomol aswell but stiil out of breath . Stopped taking salbutomol and believe me what a differance. This last week i have done some gardening walked to town up a hill only stopped twice but couldnt do it from 2 years ago . It isnt a miracle inhaler but i cant believe the differance. I always will get out of breath as i have emphasyma but this trimbow has made my life so much better. Hope this helps you.

[flicky1 in reply to Colin1314]

😁

[ceris in reply to Colin1314]

I have been On Trimbow now for 5 weeks, my god what a difference, I was having chest infections every 3 weeks and felt awful but since this new inhaler no infections, feel like I have my life back, it has certainly made a difference for me.

[stamford1234]

Go back to Dr. I struggled a bit before I found the best prescription. There are lots of alternatives. Get Dr to sound your chest you may have an exacerbation coming

[goat-lady]

I don't get along with any combined inhalers so use the single ones- that suits me. Not sure if that is cheaper or more expensive - certainly isn't a NICE recommendation! Good luck-seems to be a trial n error process.

[PurpleAlf]

Thanks everyone 😀 I have now missed two doses of Seretide and beginning to feel more ‘normal’ - no breathlessness or coughing and yes, back to talking the hind legs off a donkey! Am going to Doctors on Monday so will discuss it with her then. Have a great weekend everyone x

[nina30795]

I changed from seritide to flutiform which has a different bronchodilator and that has worked better for me. I am not sure it is a good idea to just stop the seritide as it means you stop the steroid a well and usually you have to come off these slowly even if you have only used them for a few days. I would speak to a professional first as you don’t want a kick back reaction.

Just trying to be helpful!

[PurpleAlf in reply to nina30795]

Thank you Nina, I have my steroid inhaler if things get bad, but I felt so awful I had to do something, but I do take your point 😀

[flicky1 in reply to PurpleAlf]

I was on a stronger Seretide for a year but changed to a non-steroid inhaler immediately with no problems. As I believe there is still a question mark over your diagnosis of asthma (as well as COPD) it might not be right for you anyway. I am glad you are feeling better and hope that you get some good answers and help from your GP.

Have a good weekend.

[Hidden in reply to nina30795]

I agree with you, nina30795 , I was changed from seretide to Flutiform too and found it to be more effective. There is a steroid in it and as you say, it shouldn't be just stopped in one go. So check with your doc, PurpleAlf, just to be sure.

[offalot]

Hi - nothing that happens is ever daft, no matter how it may seem! (Except perhaps what some docs think )

Every one of us is unique, and our cocktail of medication is too, so it's not surprising that drugs which should be appropriate, in theory, sometimes don't suit. Which in itself can be valuable information to a knowledgeable health care pro. But suck it and see is the general rule.

And everything has to work together. Maybe not ideally or fully - but on balance. For example I've just finished a course of antibiotics which really made me feel ill, and wonder if they were right for me as my breathing, energy, sleep all greatly reduced. But it cleared the infection and having dumped the antibiotic halfway through the second week, I'm back to normal, so all good.

I've taken Sereride 500 for years and it still works for me, but I'm finding that Combivent used in a nebuliser leaves me struggling but Ventolin inhaler always helps. Both are salbutamol, though combivent has another medication as well. It has always made me feel sick initially, and no better immediately, but half hour later the benefit would start. But not now. Things change, nothing stays fixed. Oddly, I've tried using just ventolin in nebuliser but that isn't as good as the inhaler. Don't ask me why!

Sometimes I feel, as with the antibiotic, that the energy used to process and assimilate a drug can take so much out of my system that I feel awful, which can make me think the new drug doesn't suit.

But I don't have much reserve energy at the best of times.

Good luck with getting it sorted - keep on til you get something that helps.

[PurpleAlf in reply to offalot]

Thank you Offalot for your reassurance and I am glad you are back to normal. Have a good weekend x