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Struggling with a new asthma diagnosis

Anonymous1988 profile image
25 Replies

Hi recently been diagnosed with asthma I got a peak flow meter today but I don’t know what I good peak flow actually is. I’ve got a blue inhaler and a pink steroid one. I’ve got a spacer. Just stressing as I don’t know much about asthma. I’m trying to not google as I think that’s the worst thing I can do.

Hope somebody can help

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Anonymous1988
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EmmaF91 profile image
EmmaF91Community Ambassador

Hi sorry to hear you’re confused rn

Hopefully you’ve been taught about your inhalers and when to use them etc but if not...

Your preventer inhaler (pink) should be the only inhaler you need, taken mornings and evening (as prescribed... some inhalers are only used in the mornings). When you are controlled you don’t need to use the reliever inhaler. Needing your blue inhaler more than 3 times a week suggests that your asthma is not being controlled and either you need your maintenance meds changing/upgrading or you need to have a short course of steroids to control the issue and give your lungs a chance to clear.

Every asthmatic should have an asthma plan explaining what to do when. If you don’t have one you can find one here; asthma.org.uk/advice/manage... and ask someone (doc/nurse possibly even a pharmacist) to help you fill it out.

I’m not sure if it’s relevant for you, but if you want to know how to differentiate asthma from anxiety this post may help; healthunlocked.com/asthmauk...

On the peak flow front here is a page explaining all about PF and how it works etc if you want to read up it; healthunlocked.com/asthmauk...

You shouldn’t wait until you’re really struggling before you contact your nurse/GP. The aim of asthma care is to prevent issues occurring, not to just stop when they have.

The only other thing I can suggest is giving this page a read; healthunlocked.com/asthmauk... for some top tips 😉 and this; healthunlocked.com/asthmauk... for questions to ask your GP/AN 😉. And just for fun (cause I haven’t given you enough places to read 😉); healthunlocked.com/asthmauk... for the things I wish I had known about asthma!

I would suggest giving the AUK helpline nurses a call on Monday for more personal advice. They are great and can be reached on 0300 2225800 M-F 9-5. Alternatively their WhatsApp service is 07378 606728. Also if you want to find out more information the asthma UK website is very informative for people just starting on the asthma journey (here’s a good start point then you can browse as you like! asthma.org.uk/advice/unders...

Hope this helps explain things for you a bit so you don’t need to stress as much!

Anonymous1988 profile image
Anonymous1988 in reply toEmmaF91

Thank you for your reply. I’ll be sure to give those links a read tomorrow.

I’ve not got an action plan and my GP hasn’t mentioned it.

I’ve only just been diagnosed although I’ve always thought I had it. As a child I had it but didn’t have symptoms when I reached adulthood, til I started to get chest infections, then I got given a brown inhaler/blue inhaler but I never really needed to use it. Then I developed covid and things just got worse for me. I’ve always kind of struggled with getting out of breath and things but I’ve always just put that down to my weight.

I’m so glad I found this forum as I’ve felt pretty alone as nobody I know has asthma

EmmaF91 profile image
EmmaF91Community Ambassador in reply toAnonymous1988

Ah. You may also benefit from giving AUKs Post COVID hub a call on Monday as well then on 0300 2225942

Post viral issues are cropping up everywhere, and can both worsen asthma AND/OR be confused for asthma (ie some people find that they are short of breath but it doesn’t respond to asthma meds so it’s not asthma if that makes sense, whereas other are finding they’ve needed to escalate their asthma meds, but that has got rid of the breathlessness)

Anyway. Lots of reading for you 😉. And welcome to the forum. Hopefully you’ll gain control back soon or at least find answers.

Birthday60 profile image
Birthday60

Google peakflow and you will find A chart which will give you your target - based on age, gender and height. Simple?

twinkly29 profile image
twinkly29

Hi, sorry to hear things are confused and difficult for you.

EmmaF91's posts, advice and links should give you all the info you need. I second giving the post covid hub a call as they'll be best placed to help you unpick the 'is it asthma, is it post viral' thing - as much as anyone can anyway! My suspicion is that many people who've had covid who are struggling with breathlessness will be dealing with post viral breathlessness (which can last a very long time even in flu or pneumonia - and of course covid is a different kettle of fish). As Emma says though, some people with an asthma history might need to increase their asthma meds.

Peak flow, again Emma's link is brilliant. It, peak flow, should really help to distinguish between post viral and asthma, as well as seeing whether your new asthma meds are doing the trick (if the current issues are asthma). Regular peak flow measurements will help you to find YOUR RANGE. Yes, one can find stuff online BUT these are not targets in the 'what I need to aim for sense'. These are merely averages for your age/height - of course only some people can be average as that's how an average is produced; some will be over average and some will be under average. Plus I think these averages were done many years ago so are probably kind of outdated.

But anyway, your target is always your own personal best when well. Some people have a much higher PB than the expected average and some have a lower PB - this isn't necessarily related to asthma severity or the condition but other factors entirely. It's tricky in your situation to know or find your best but ongoing regular measurements will help. Plus, as I say, they should continue to improve if your asthma meds are helping (and if they're staying the same then it's a talking point for 'is it the asthma causing the issues?').

Happy reading with Emma's links - hopefully the content will make things clearer and less stressful for you in the first instance as that will help you all-round anyway.

Anonymous1988 profile image
Anonymous1988

Thank you everyone :)

Anonymous1988 profile image
Anonymous1988

I don’t think it’s post covid I think it’s asthma... as I struggled before Covid too. Just not as bad.. but I’ve always had a bad chest, and struggled with breathlessness. Just never really engaged with inhalers til now I guess

twinkly29 profile image
twinkly29 in reply toAnonymous1988

Engaging with inhalers should definitely help then - and at least if it is asthma causing the issues then the new meds (pink inhaler instead of brown) should help too - and peak flow should improve as they help.

Anonymous1988 profile image
Anonymous1988 in reply totwinkly29

Thank you.. my peak flow is currently 250

twinkly29 profile image
twinkly29 in reply toAnonymous1988

Until you know what your best is its difficult to do anything with that (and anyone advising otherwise shouldn't be!) You could relate it to the average expected peak flow for someone of your age and height... but that could mean, for example, your expected is 400 but your best when well might actually only be 300 in which case 250 is basically ok. Conversely, your best when well might turn out to be 600 and so a current pf of 250 would be concerning.

But keep going with the peak flows (twice a day before you take your pink inhaler, best of 3 each time....think Emma's peak flow link explains the technique) and you'll soon get a bank of readings. If things are feeling better than they were but room for improvement, a GP or asthma nurse will be able to look at alternative or additional meds - and your regular peak flow measurements will help them in doing that. Keeping a symptom diary might be useful too, not obsessively but maybe if you notice you're short of breath or wheezy or something. And, if you are, doing your peak flow then using your blue inhaler and redoing peak flow 15 mins after using it will be useful for them too, to see the impact it's having.

Sorry I'll shut up now 😅

nmcv13 profile image
nmcv13

Brilliant advice above. I was diagnosed 6 years ago at age 50. It’s taken this long to really start to understand my triggers and how to manage it. The asthma plan has been essential to that. It sets out when I need to take action such as increase inhalers, take steroids etc. It needs to be done with a clinician, so specialist nurse or dr. Good luck and stay well.

Anonymous1988 profile image
Anonymous1988 in reply tonmcv13

Thank you for your reply. I hope your doing okay. I guess it’s all a learning curve

AirIsUnderrated profile image
AirIsUnderrated

Just hugs from me - someone else newly diagnosed and working out peak flows and inhalers. I can't believe how much reading and Googling I've been doing. We'll get there! 🤗

Anonymous1988 profile image
Anonymous1988 in reply toAirIsUnderrated

Thank you

What inhalers do you have?

AirIsUnderrated profile image
AirIsUnderrated in reply toAnonymous1988

Qvar 50, 3 puffs morning and evening, and Salbutamol when needed. But since increasing my Qvar dose from 4 puffs a day to 6, I've only needed it once or twice a week. So much better.

What is your pink inhaler called?

Anonymous1988 profile image
Anonymous1988 in reply toAirIsUnderrated

Yeah I’ve got salbutamol as needed and Fostair morning and night two puffs

AirIsUnderrated profile image
AirIsUnderrated in reply toAnonymous1988

I think Fostair is the one my respiratory nurse wants to change me to. It contains a long acting bronchodilator so I shouldn't need the salbutamol at all with it. How often are you needing the blue one?

Anonymous1988 profile image
Anonymous1988 in reply toAirIsUnderrated

I don’t use my blue one much. Still have to use it just not much.

I’m still new to all this only got diagnosed a few weeks ago

twinkly29 profile image
twinkly29 in reply toAirIsUnderrated

That's good that you're hardly needing your blue now!

Ortho10 profile image
Ortho10

The important thing to remember is that Asthma is such a common condition.

There are so many different treatments that really do help you lead a completely normal life.

I have been a chronic Asthmatic all of my 52 years, I have two children hold down a full time job and cycle to work and back 22 miles every day!

My eldest child was Asthmatic and has completely grown out of it, please be positive!

twinkly29 profile image
twinkly29 in reply toOrtho10

Unfortunately for those of us who "grow into it" it's less common for it to go away....but I agree that with the right treatments (taken as prescribed and not "not bothered with" or disliked!) it can be well controlled and doesn't have to affect your life - a good point you made and one to remember!

AirIsUnderrated profile image
AirIsUnderrated in reply totwinkly29

Yes, I had it as a child and "grew out of it", and here I am at 51 apparently grown back into it again. D'oh.

Common hopefully equals well-researched and therefore better educated clinicians, although it doesn't always feel that way. How much worse it would be to have a rare condition that most people had no idea about.

twinkly29 profile image
twinkly29 in reply toAirIsUnderrated

Hahahaha no. Sadly it doesn't always follow. We can hope though!

I've heard that the thinking is that children don't actually grow out of asthma - either it was diagnosed, probably on symptoms alone as young children "back then" when perhaps it wasn't asthma but viral wheeze or similar which disappear when children's bronchial tubes are bigger/more well developed.....or it was asthma but settled once bronchial tubes bigger etc....until (for some) different things appear to trigger it in later life - such as viral infections or hormone changes in adulthood or lifestyle/environmental things.

AirIsUnderrated profile image
AirIsUnderrated in reply totwinkly29

Interesting. I had it from age 7 to 19 when I left home, and left behind my father's smoking. Within months of moving out, I no longer needed an inhaler. Now I'm in peri-menopause as well as post-viral so that fits.

Usa2elsewhere profile image
Usa2elsewhere

Googling diseases for the purpose of care and understanding of something if something you or a loved one has or even may have usually brings up something very scary which may not apply to the particular person or may even be untrue. However, I think we need to be informed and googling is especially good for natural and alternative treatments which we can talk to our medical professionals about and possibly get a second opinion. Sometimes even a change of a medical professional would be appropriate. So, the caveats are getting info that applies to the person and the info utilized needs to be accurate.

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