Had my appointment

[Esad]

Thank you for everyone's advice a few weeks ago. I had my long awaited appointment today.

I shared my symptoms, along with frequencies etc. I explained my usual stress response which is very different to the symptoms I'm getting.

The Dr listened to my chest, said there wasn't a wheeze but it sounded 'tight'? I had to do three peak flow readings which were apparently much lower than the last time.

I think the doctor was a little surprised with the diagnosis I'd been given tbh. She said whilst the breathing test results weren't conclusive, my symptoms are indicative of possible asthma, and that a trial of treatment should be given. So I have a blue inhaler for now, though she said it's likely I will find I'm using it a lot based on my symptoms/frequencies, and if that's the case, to ring and get another appointment to discuss other options.

I picked up the prescription at 4pm, read the leaflet and by 5pm my cough and tightness started so I gave the inhaler a try. I don't want to jump to conclusions, but the relief was amazing. It took a few minutes to kick in, but the tightness eased off followed by the cough. Before now I'd have been subjected to it for the next hour.

The test will be during the night, as its always worse then. It would be great if I could get a good night sleep.

How do you keep a track of how much and when you've used your inhaler? Is there an app or should I stick to my current log of symptoms and frequencies?

[Patk1]

I'd b inclined to use it before sleep.worth noting whn use it,why,and effects.its great that it helped you x

[Esad in reply to Patk1]

OK, thank you, I'll try that

[Esad in reply to Esad]

I managed until 4am and only woke once!! Normally awake before then.

[Poobah]

Good progress. At least you now have a rescue inhaler with the option of additional treatment.

If you have a smart phone, you could use the Notes App (or download one) to keep a running record of daily use of your new inhaler.

I agree that it may help taking one puff before bed and see how that helps in achieving uninterrupted sleep.

If you're taking the new inhaler more than 3 times a week, definitely make a follow up appointment with your GP in order to discuss the possibility of a preventer inhaler.

All the best.

[Esad in reply to Poobah]

Thanks, yeah the notes app is a good idea then I'll always have it with me. OK, only 3 times a week, that isn't many and I've used it that many times already. Am I maybe using when I shouldn't? Or will it calm down a bit as I use it.

[Poobah in reply to Esad]

The 2 or 3 times a week need for your blue inhaler is just a benchmark. If you're using it more than that, just keep a note and see your doctor, as it sounds like you'll need an additional inhaler that acts as a preventer that's taken daily and over time will control symptoms and so you should not need the blue inhaler more than once or twice a week. But the fact that the inhaler you have is helping is a good sign. But it's only designed for short relief of up to 4 hours, so your symptoms will return. Whereas any preventer inhaler will act slowly over time and ultimately get everything under control.

[Esad in reply to Poobah]

OK I see. So ideally that's what I'm aiming for, 2-3 times a week or less in the long run. Yes, I'm amazed at how much a difference its made already. When I woke in the night with tightness, I usually lie awake for ages unable to get back to sleep because I feel like I can't breathe out properly. Last night after a few minutes it went away and i didnt wake again until my alarm went off.

[ReedB]

I'm glad to hear your appointment went well. Sounds as though it would be worth keeping a peak flow diary to measure any improvements before and after the inhaler.

[Esad in reply to ReedB]

I wasn't given a peak flow gadget for use at home, just used it with the GP, should I have one? 🤔

[ReedB in reply to Esad]

It's not completely necessary but keeping track of your scores helps determine a personal best and also helps to identify when asthma is deteriorating. For now it will help show how well the inhaler is working for you. I think you can buy peak flows though I've always had mine from the GP. Peak flow diary can be downloaded and printed off from the asthma UK website.

[Esad in reply to ReedB]

Found one on amazon, should arrive tomorrow. How do I know what I should be getting? I know initially at the GP, my result was much higher than it should be, that's partly why I was told it must be anxiety, but this week's appointment she said it was much lower. I will have a look at my records and see if I can find the numbers.

[ReedB in reply to Esad]

I wouldn't about what it should be for now just focus on the difference before and after you use your inhaler. Take a reading before, take your inhaler, wait 10 minutes then take another reading. Over time you should see what's good and likely what's not.

[Lysistrata Administrator Community Ambassador in reply to Esad]

I agree with ReedB but also glad the GP isn't just going on one high number.

Peak flow needs to be used in context and the 'should be' number (predicted) is not gospel. Unfortunately way too many medics think everyone has to be at their predicted. It's just an average of the numbers from a group of people in the past who were the same age/sex/height as you.

Individuals differ and a high best doesn't mean you can't have asthma - nor does not dropping mean no asthma symptoms. My personal best is way better than predicted and I have severe asthma. I put it down to playing the oboe for years. If you played a lot of sport or a wind/brass instrument as a child, or did a lot of singing, it's likely your best will be higher than predicted.

[Esad in reply to Lysistrata]

As a child I was a swimmer, and played the trumpet, so maybe explains why mine was better than the doctor expected?

A question, should the result be really variable? I'm doing 3 and taking the best.

First drs result 600 and last weeks was 460 according to my results. Yesterday I got 550 in the afternoon, but in the evening 440, when i woke in the night 400 then 560 this morning.

When I got 440 I had my inhaler then got 520, and 400 got 490 after 🤔

[Mandevilla in reply to Esad]

It does fluctuate during the day - mine is always lower morning and evening and higher in the middle of the day.

It's worth taking it regularly a)so that you can work out what your 'personal best' is and b) so that you can work out if a drop in peak flow is a reliable indicator of trouble for you. A drop in peak flow is a really good indicator for me, since that usually shows up before I feel any symptoms, but other people can keep getting 'normal' peak flow even when they are really bad.

The problem with the 'average' charts is that they are just that - an average! One of the reasons I took ages to get diagnosed is because my normal peak flow is very high, so when I got it checked in hospital, I'd be told it was 'slightly below average but nothing to worry about'.

If you know what is normal for you, then if you need to go to hospital, you can tell them, for example, 'my peak flow is x below my normal reading' or 'yes, I know my peak flow is normal, but it never changes when I'm having a flareup'.

[Lysistrata Administrator Community Ambassador in reply to Mandevilla]

Yes all of this! I think there needs to be better understanding of what an average is - it does not mean 'everyone has this result'.

My peak flow is definitely not the most reliable indicator by itself, as it drops somewhat when I'm struggling but not as much as you'd expect even in a bad attack. The pattern I get is much more telling - I can get huge reversibility too of around 50% or more.

[Esad in reply to Mandevilla]

Oh OK, useful to know, thank you. I was a bit worried I was doing it wrong because they were so different. I've just looked and apparently mine 'should' be 430. I will make sure I get plenty of data to learn what my normal is.

[Lysistrata Administrator Community Ambassador in reply to Esad]

Yes swimming and trumpet could do it!

Re variable - each set of 3 should be similar to each other to be valid, but it seems like you're talking about the results at different times being variable?

Asthma is associated with variable peak flows, and you're also getting plenty of reversibility with the inhaler, which supports what you're saying about how it's helped your symptoms. (To work out percentage reversibility, it's the higher number minus the lower number, divided by the lower number. So 490-400 is 90, 90/400 is 0.23, 23% change from before the inhaler to after). If you have asthma, you find the right preventer and your asthma is well controlled, you should see your peak flow become much less variable - plotted on a graph, it would be a fairly steady line rather than the mountain range you are getting currently.

I would definitely show these results to your GP as both variability (in symptoms and peak flow) and reversibility with the blue inhaler are associated with asthma. These are much more important than the fact you can get a better than average best result - the context and pattern of peak flow and symptoms are important. And in general they should be comparing your results to each other and what you can do, not what the average or someone else can do.

As I've said before, we obviously aren't qualified to diagnose on here so can't say you have asthma or not, but this is all useful information to have and it does suggest that asthma is something for the GP to be very seriously considering.

[Esad in reply to Lysistrata]

My favourite trick to do when I was younger was challenge people to see how far we could swim under water and could manage a full length, so reckon I had good capacity. I cant do that now mind, I like to go swimming but it seems to give me a burning feeling in my chest and wouldn't manage a width underwater most times 🙄

Ah yes, the three results are similar each time, just variable at different times of day. OK, thank you for your explanation. I have got my partner to do it, and they kept getting very similar results each time. But I guess I know something is going on with me, because of the symptoms I'm getting. So the peak flow measurements do seem to be demonstrating something. And, like you say, the inhaler helps my symptoms, and helps me score better.

[Esad in reply to Lysistrata]

Do you get used to the jittery feeling after the inhaler ? I like the help it's bringing, but it's an off-putting side effect.

[Lysistrata Administrator Community Ambassador in reply to Esad]

It's not the best feeling, I agree! It does often go down when your body adapts to it. It will likely come back if you have a period without using your reliever much for a while and then need it - I find that nebulisers, which cause quite an intense shake, are easier to tolerate if I've been using them more vs using after a better period when I didn't need them.

I definitely find the relief outweighs the shakiness - but if you feel jittery etc after your inhaler it can be hard to do anything coordinated for a bit, like chop things for cooking!

[Lysistrata Administrator Community Ambassador]

Glad it went well! The reliever helping certainly suggests that asthma is a possibility.

I'm really glad to hear your GP so far seems to understand that asthma does not need a wheeze, how to listen for other things, and has told you to come back if you find you're using the inhaler a lot. As Poobah has said, definitely follow up on that and go back (hopefully to see this GP as she seems to be getting it) if you're needing to use it more than 2-3x a week.

If you're needing it several times a day and/or it's not lasting as long then get an urgent appointment - don't wait for a routine one.

In terms of tracking, I would say go with whatever makes it easier for you and easy for your GP to see what's happening. I agree with ReedB that a peak flow diary may be helpful at this point, especially tracking before and after you use the reliever. A friend uses a graph drawn out that's tailored to her own personal best. She marks pre inhaler with one colour and post with another and draws a vertical line between them - it's easy to see the pattern. She also writes on triggers/symptoms.

There are apps but I've never found any much good - admittedly I haven't looked for a while, and several I would have tried were iOS only and I have Android. (AsthmaMD gets recommended a lot as 'developed by a doctor'. Well they certainly didn't seem to involve any patients with the ones I tried and gave up on!)

[Esad in reply to Lysistrata]

Thank you for your reply.

As I replied to Poobah, I've already used it 3 times since yesterday? Am I using it too often? Maybe I'm doing it when I shouldn't? Or will it calm down as time passes?

I will look at the apps but I'm on android too so perhaps it might not be great. The notes app sounds a good idea and always on me then, especially as I don't have any peak flow data to capture.

[Lysistrata Administrator Community Ambassador in reply to Esad]

It might be worth asking for a peak flow meter, or buying one, and learning how to use it (ALUK has advice here: asthmaandlung.org.uk/sympto.... You could ask the pharmacist too (or honestly buy one on Amazon, Mini Wright, and watch the video in the link if you can't easily get to a pharmacist).

I'm slightly surprised the GP didn't actually, as tracking over time and in response to medication is more useful than a one-off reading with less context when you may be feeling ok. It can help with diagnosis.

In terms of 'too often', if you need it, you should take it. As Poobah said, using it a lot is just an indicator that things aren't too well controlled, if you have asthma. The reason it says the limit is 4x a day is not because more than that is an overdose, but that it shows things are really not well controlled. If you are diagnosed with asthma and get the right preventive medication then you should start needing it much less.

But don't hold off if you need it! I just wanted to make you aware that if it's wearing off sooner than 4 hours then you should be asking for an urgent GP appointment - and if it stops working at all or is wearing off very quickly and you're still breathless, or you're too breathless in general to speak/eat/sleep then go to A&E -you can tell them you don't have a diagnosis but are being assessed for asthma. (Just a reminder - as I said before better to be safe than sorry even if it's not confirmed asthma: asthmaandlung.org.uk/condit...

[Esad in reply to Lysistrata]

I've just bought one from amazon, so I should have it tomorrow.

Ah, OK thank you, I understand. So telling you, you need to do something more rather than ticking along at home in your own.

I will bear in mind it not working, or not working long too. Thank you.

[Juliefrog]

I used the notes app to record peak flow, but I've also just started using smarthaler on my android phone - it gives you a cap to put on your inhaler, and then you tap it against your phone when you've used the inhaler and it records the puffs and counts down so you can track when you're almost out. it's a bit hit and miss on occasion, but was free with a code from the GP, so worth having a rough idea - it records how many puffs, how often and can do an overview report