Should I go back?

[-Butterfly-]

An out of the blue attack on monday, so went to gp Tuesday to be told chest clear etc but come back if worse.

I don't normally wheeze but this time the wheezing is there a lot of the time (except at the GP obviously 🙄) if I get tightness and cough I take my reliever and it eases, but the wheeze is still there.

It's not worse, but no better. Do I need to go back? Or wait and see if it gets worse. I'm thinking just to carry on as it's no worse. I cant check my pf as I accidentally dropped and broke my pf meter.

[Js706]

Sorry to hear about this 😞

I think it’s probably worth trying to go back to your GP today (if you tell reception it’s for acute issues with your asthma they should find you an appointment). It may not be much worse but it’s been a few days and if you’re still struggling a bit it’s probably worth getting checked out again as you might need a short course of oral steroids to help settle things.

Especially as the weekend is coming up! You know Sod’s law you’ll end up waking up on Saturday morning feeling worse otherwise and then have to battle with out of hours 😂

If nothing else you can get a prescription for a new pf meter too! 😊

[-Butterfly- in reply to Js706]

Thank you for your reply. I guess I just worry they'll tell me everything is fine again and that I'm wasting their time, so I like to sanity check with someone else lol.

I know im not fine though, was woken in the night needing my inhaler, and I'm still wheezing which I honestly very rarely do. Hopefully I can get an appointment this morning and I'll try and hold off taking any more of my inhaler so they can see me bad if you know what I mean.

[Js706 in reply to -Butterfly-]

I know exactly what you mean! We’re always happy to sanity check here! 😂

Unfortunately sometimes you do have to be a bit persistent with asthma 🙄 but if you’re struggling after a few days and needing your inhaler in the the night then something definitely isn’t quite right!

Fingers crossed you can get an appointment and they’re helpful - as long as you stress it’s for asthma and the fact that you’re struggling you should be fine getting one 🤞

Hope you feel better!

[-Butterfly- in reply to Js706]

Thank you.

I have managed to get an appointment in 20 minutes! Unheard of!! The receptionist said literally the call before mine in the queue was to cancel. Let's hope I have as much luck with the GP.

[Js706 in reply to -Butterfly-]

Hope it went ok and was with one of the nice GPs!

[-Butterfly- in reply to Js706]

Ended up with the same GP as the other day! Pf (74%) and SATS (97%) still acceptable apparently despite feeling really quite rubbish by this point, although she could hear a wheeze this time. She didnt want to give me oral steroids just yet, said 2 puffs of ventolin every 4 hours. Come back next week if no better.

So no better off except a new pf meter 😂

Just exhausted, so called in sick and slept on and off.

[LittleMissFaffALot in reply to -Butterfly-]

That doesn't sound good. I do hope you improve. Why was she reluctant to give you the steroids?

Have you got an asthma plan? I can't actually remember what mine says but I think 74% pf is into the amber section

[-Butterfly- in reply to LittleMissFaffALot]

She just said they're a last resort. I've had them before, and they've worked well, which is why I'd hoped to get some now before I get worse and take longer to recover.

No I dont have an action plan, the asthma nurse is not very good either 🙁

[Lysistrata Administrator Community Ambassador in reply to -Butterfly-]

There are doctors out there who seem to think they're there for if you're about to go into intensive care. Errmm, nope, they can also be used to keep you out of hospital entirely, and if done right a short burst now can save on more later, which seems to be very poorly understood!(They don't seem to work for me now but I *think* they used to a bit, and I never seemed able to explain that it might be better to do a short high course than a lower one that doesn't help and leads to more for longer),

[Mogget in reply to -Butterfly-]

I’m sorry to hear this and hope you pick up soon. If you don’t definitely go back and perhaps try and see a different doctor? And then longer term perhaps you could complain and/or change surgery... It really does sound like steroids could clear this for you, especially if you respond well to them. I’m surprised you haven’t been given any. I’ve always been given them quite readily (and that’s without a wheeze and decent sats). I also have a ‘rescue pack’ (which I thought was a standard thing as I’ve received it from a couple of different surgeries in places I’ve lived) which is a back-up pack to start taking at home if an attack starts at the weekend or similar when the surgery is closed. Or to use if I simply feel too pants to drag myself in.

[-Butterfly- in reply to Mogget]

Yes I've considered moving surgeries but it's a 'better the devil you know' kind of situation. The only other nearby surgeries are currently merging and I've heard lots of bad stories. 🙈

Even when I do get steroids they usually give me only 30mg

[LittleMissFaffALot in reply to -Butterfly-]

To be honest my 'asthma nurse' was rubbish too! She admitted herself she was a general nurse and I'm sure I knew more about asthma than she did!! I only got an action plan cos I have a few related health issues and was referred to the asthma specialists at the hospital and it was them that gave me a plan!!

[-Butterfly- in reply to LittleMissFaffALot]

Mine has asthma herself so told me a pf of 350 or something would be fine because shes ok with that 🙄 I refused to listen after that! When I've asked for advice about exercise which is still limited by my asthma, she just says oh that's odd 🤔

[Lysistrata Administrator Community Ambassador in reply to -Butterfly-]

Ugh I do think sometimes they only hear 'steroids are bad' and not 'steroids are sometimes needed'. Especially if not up on asthma and too fixated on specific markers. I know very well about the GP lottery - will you get the good one or what sounds like one who doesn't get it and where you'd need to be turning blue for them to do much?

Was that 74% of your best or of predicted (or are they similar)? Sats are really not the right thing to be using here, but wayyy too many drs I think just go off how it is for COPD. Perfectly possible to be having a severe attack with good sats!

As others have said keep an eye on it and you may need to be persistent with going back if still struggling. I also wonder about the action plan - is peak flow really a reliable indicator for you? It doesn't sound like it's very helpful right now so maybe need to update the plan to emphasise symptoms as well as/more than peak flow if it doesn't already. I don't quite have a plan but if I waited for my peak flow to drop into a standard red zone I really would be going blue and collapsing!

Not sure this is helpful sorry but as a sanity check I totally agree with you that something seems to be going on and you're right to keep pushing with GPs etc.

[Junglechicken in reply to Lysistrata]

So agree with you about having a severe attack with good stats. I’ve had several but were dismissed as panic attacks (to this day I still can’t get my head around this). It took a respiratory specialist to recognise the attacks as asthma, something that was plainly obvious to everyone but a non specialised medic. When you have a person in front of you who is a known asthmatic wheezing, coughing, racing heart and breathing difficulties, I think PF becomes academic. You don’t need it to establish if this person is poorly, you can physically see it! Makes me so mad and worried that lives are being placed at risk because a machine that can’t see the whole picture suddenly becomes the number one authority. As a student of history we have it drilled into us “don’t rely on one source for information or use one source to make a judgement” surely the medical profession should be no different

[Lysistrata Administrator Community Ambassador in reply to Junglechicken]

The medical profession I suspect doesn't study enough history (I'm sure there are exceptions but maybe they should be doing more...). As someone who did undergrad in humanities then crossed over into science later, I did find all the intense history/historiography study very helpful for evaluating medical research critically! (My history tutor always said 'EVERYONE is biased. There's no point just saying that - work out how they are, and why, and how it influences them as a source and what you can get from that source while taking it into account.')

Peak flow can be very helpful for some people, including those who don't always notice symptoms - and apparently some drs aren't always good at taking that into account either. It definitely does need to be an overall view of how you are - I find the response of my peak flow is more helpful than the number alone (ie does it go down after x or up after treatment, and how long does that last?)

[Junglechicken in reply to Lysistrata]

So true. I’m very biased towards spiders. I think everyone one is a horrible eight legged savage monster that will attach its self to your face for all eternity. I’m sure there are lots of very nice, polite spiders out there who wouldn’t dream of decorating your face with its body😂

[-Butterfly- in reply to Junglechicken]

Please can you be my GP?!

Yes it infuriates me that I have to leave feeling a fraud and then worry about presenting again, just because I dont tick their boxes. Just because its within normal tolerance, doesnt mean it's normal for them. My dads resting heart rate is 44, to doctors that's a problem bit actually hes perfectly healthy and it's absolutely normal for him.

[Junglechicken in reply to -Butterfly-]

😊I would love to be a respiratory specialist and help asthmatics but I’m actually terrified of anything medical and start to shake the second I walk into a medical establishment, which I think might be a bit of a problem. I do have a very dry off the wall humour which I do have to tone down at times. Remember you are NOT a fraud and should never think like that. I had to take matters into my own hands to get the treatment I needed by going private. I knew something was physically very wrong although I doubted myself a few times thinking maybe these are panic attacks ( GPs are more experienced in these matters than me so they must know best, right?) I did my research and discovered that panic attacks don’t have a 5 hour run up and usually are very intense but are over quickly, don’t include a wet cough or wheezing and probably don’t respond to asthma medication. I was having attacks so frequently I thought I was dying and nobody believed I was ill ( that was the worst aspect, although the racing heart rate was up there) I was very lucky that the private treatment option was open to me. Not everyone is that lucky. Keep fighting! I understand that it’s so hard when your so ill but your a tough cookie. The day of my specialist appointment, I was struggling to stay up right I just wanted to lie down (physically and emotionally drained) but I knew this was a chance to get well, I had to dig deep. You can do it too!

[-Butterfly- in reply to Junglechicken]

😬 yes that could pose an issue, unless you practised in a coffee and cake shop or something 😋

Im sorry to hear you had to go private before you could get any sense from anyone. Do you continue to go private or transfer back with the correct knowledge?

Yeah I sometimes just think maybe is just in my head, but then I listen to my breathing, or count my breaths and compare it to other people and think hmm no that's not right. Or I'll hold off using my inhaler thinking it might pass, when it doesn't and I then take my inhaler and can almost feel my chest relax.

Thank you for your kind words, it means a lot right now.

[Junglechicken in reply to -Butterfly-]

O yes, that means I could give my patients tea and cake when they came to see me. Would have to train the nurses to be baristas though. Glad I can help, sometimes just having someone take notice can make you feel a little better. I received a letter from the specialist soon after the appointment which medically validated everything that I had been saying for at least a month and recommendations for treatment ( my lungs were badly inflamed from constant post nasal drip irritation the result of chronic sinusitis) I took this back to my NHS GP and got the medication that has put me on the road to recovery (now 3 months attack free!)

[-Butterfly- in reply to Junglechicken]

Love to hear this!

[-Butterfly- in reply to Lysistrata]

It was 74% of my best which is 570 which means it's even harder to make them listen because 420 for most people is great! To be honest my pf is rarely a good indicator, I can be getting 500 and be really struggling or get 450 and feel fine. I much prefer to go by my symptoms and how well I recover after ventolin, which at the minute, I'm not.

[Lysistrata Administrator Community Ambassador in reply to -Butterfly-]

My best is 630 (predicted 470) so I totally get that! I've been in resus with a dodgy ABG and it's still over 50% (but another attack, not so bad, 240 and paramedics were all oohh this is bad. Well it's not ideal, but I've had worse and been higher then!)

And I'm similar in preferring symptoms and ventolin response as a more accurate gauge, but it can be hit and miss as to whether they listen. If you're not responding to vent well that would be a definite red flag - keep trying to get them to listen.

[Junglechicken in reply to Lysistrata]

I know I shouldn’t laugh Lysistrata as you were in a horrible situation but I liked the comment “well it’s not ideal”. My dry black humour.

[Lysistrata Administrator Community Ambassador in reply to Junglechicken]

Oh laugh away! The worse my lungs are behaving the blacker my humour (but I can't laugh at the time lol). Also on that particular bad attack I was for some reason mainly fixated on how much I wanted a cookie, and how for multiple reasons I couldn't get one right then, nor would I have been able to eat it if I had.

[Junglechicken in reply to Lysistrata]

I get so thirsty before and after an attack. After my really nasty one, I just wanted 3 bucketfuls of tea.

[Junglechicken in reply to Junglechicken]

It was later on in the evening so I drank all this tea then spent the whole night in the bathroom. Happy Days

[Lysistrata Administrator Community Ambassador in reply to Junglechicken]

LOL. Unexpected side effect of asthma...

I have too often come across the Fluid Trap. This goes as follows: your heart rate is high! Yes because I can't breathe. Don't worry, we'll give you IV fluids to bring it down. IV fluids given, need loo, still can't breathe, HR skyrockets getting to loo and breathing worse. Ooh HR still high, more fluids...they're not working. Hint: try treating the breathing, which will be *much* easier if you stop making me need the loo so often. No, I don't want a commode thanks all the same unless I really can't avoid it, and even that will still be hard work unless you sort the breathing out.

(Sorry Butterfly, we're going off on a bit of a tangent lol).

[-Butterfly- in reply to Lysistrata]

No worries, it made me giggle

[Lysistrata Administrator Community Ambassador in reply to -Butterfly-]

Not setting off lungs I hope lol! How are you feeling now? Is the vent helping?

[-Butterfly- in reply to Lysistrata]

Ha ha no

Sent most of the day in front of the TV so not too bad thank you.

[LittleMissFaffALot in reply to -Butterfly-]

I'm exactly the same with pf (except I very rarely measure it - oops). I can't remember the number but I know mine is considered very good - I'm a woodwind player, so well-conditioned lungs!

[-Butterfly- in reply to LittleMissFaffALot]

Ex brass player 😊

[-Butterfly- in reply to -Butterfly-]

So question, she said 2 puffs every 4 hours, do you think I can take more than that? So maybe 4 puffs one time. Just 2 isnt always enough 🤔

[Lysistrata Administrator Community Ambassador in reply to -Butterfly-]

I'd say yes but keep a very close eye on how much you need. I'm wary of this doctor's knowledge - she should have told you what to do if you were needing more. If it's really not lasting and you're needing a lot then get in to see someone asap. If 2 isn't lasting 4 hours that's not ideal; if 4 isn't lasting 4 hours that's really raising some red flags.

You can take up to 10 at a time but if you need to do that and it's not helping then hospital/ambulance. Even if it does help you need to be seeing out of hours/GP asap - and as above I think if it's really wearing off quickly and you need more than 2 puffs you should be doing that anyway.

[-Butterfly- in reply to Lysistrata]

Thank you. 😁

I have been taking 2 every 4 as instructed, earlier I had a second lot of 2, 5 minutes later as I didnt feel itd settled it enough but only done that once. I've been keeping a record of when I've taken it so I have some facts should I need to see someone.

[Lysistrata Administrator Community Ambassador in reply to -Butterfly-]

Good plan and sounds like you had a lazy day - glad vent is keeping on top for now! Hope things settle.

[Lysistrata Administrator Community Ambassador in reply to LittleMissFaffALot]

Oboe for me. Great peak flow, doesn't seem to have stopped the lungs turning into psychos sadly lol.

[Junglechicken in reply to -Butterfly-]

So true. My PF is 485. Had times been at 350, fine. At 400 very poorly.

[Eian59]

Hi

It's best to see your Gp Asthma is very unpredictable and dangerous , your Gp won't think you are wasting their time it's better to catch it early than have a hospital stay. Hope you feel better soon and get your appointment.

Regards

Eian

[-Butterfly- in reply to Eian59]

We have some not very nice GPs and I've been brushed off by them in the past, so I worry I'll see one of those. I've been asked why I got an emergency appointment when it really didnt warrant it.

Got an appointment in 20 minutes, dont know who with, fingers crossed it's a nice one. At least I'm definately still wheezing and my chest is tight and heavy again.

[Junglechicken in reply to -Butterfly-]

If a GP brings you to task about getting an emergency appointment just say “asthma kills 3 people every day. Do you want me to be one of them?”

[-Butterfly- in reply to Junglechicken]

I love this!!!

[Js706]

Ugh sorry to see that the second GP trip wasn't overly helpful! But hopefully having the more regular ventolin will help keep things under control and settle things over the weekend!

[-Butterfly- in reply to Js706]

Thank you

[Catsncrochet]

I do sympathise with both the horrible difficulty in breathing and with medics trying to keep people off oral steroids. I’ve had asthma and Bronchiectasis for 11 years, so lots of Prednisilone, and now have osteoporosis- broken arm, ankles 3 times, ribs, etc. And I’m fat as hell or “cushoid” as my respiratory consultant calls me.

If you can possible get better without them there is a benefit, but I know sometimes we do need them. Good luck!