Very little variation in peak flow during flare-ups - why, and anyone else?

[fostairex]

Hi, I have had asthma for 15+ years, mod-severe for 1.5 years. In the last 7months have had 3 rescue courses of pred and been changed from Fostair 200/6 2puffs twice a day to Atectura 125/260 1puff once daily by my consultant (which hasn’t helped). What seems strange to me is that I never have great variation in my peak flow. My lowest has been about 360, (should be 460) but this last flare up it’s not been below 400 despite feeling awful. I read on the Asthma UK website that your peak flow may not necessarily be down during a flare-up but I haven’t been able to find anything else about it. Can anyone tell me how that’s possible and if they are in a similar situation? Thanks.

[twinkly29]

For some people it doesn't drop or drop much - but should still increase with reliever medication. So, if you haven't already, maybe try doing your peak flow when symptomatic, using your blue inhaler then repeating your peak flow after about 15 mins and see what happens then?

Sometimes we get what appears to be asthma issues but isn't actually asthma (particularly if asthma medications don't really help). But obviously I have no idea if that's something that's been happening with you.

[fostairex in reply to twinkly29]

Hi thanks for your reply. I’ll try doing that - although I’m on day six of my steroids now so feeling much better...hopefully it will be a while before I become symptomatic again! (It seems to go in cycles for me - after steroids I am usually ok for a month or two, then gradually start to need Ventolin every day, which helps, then needing it a number of times a day but getting little relief from 2puffs - usually when it gets to this point I need 4+ puffs to get any relief. Glad I have got to recognise the pattern, at least, and to know to call my GP and get started on pred sooner rather than later. But I realise that’s not a pattern that you’d want to continue for much longer...hope my consultant will come up with something better this time!) do you know if when they change medication at this stage of asthma, if they would usually do spirometry/FeNo/any of these tests that I have been reading about, or is it usual for them just to say “let’s try this for a few months and see how you are?”

[twinkly29 in reply to fostairex]

Oh the joys of limbo (the slow decline!)

The tests.....depends who it is (consultant or GP), when and where it is and if they're doing the tests at the moment (some are, some are saying no because of covid 🙄). So they might or they might not but they should take any peak flow info you have into account and symptoms too - so the usual patterns for you, symptomatic times and impact of meds including that the pred has obviously helped which indicates it is probably asthma issues (handy if you're someone whose peak flow doesn't necessarily change)

[fostairex in reply to twinkly29]

Thanks again. That’s a good point about responding to the pred. It’s nice to have some objective “proof” because sometimes you do start to wonder if you are imagining things, imagining that you feel worse that you do and so on! Sounds like you’re familiar with the slow decline too. I haven’t heard of anyone else who experiences that, but then I don’t know any asthmatics too well, apart from a few who are v well controlled just on Beclamethasone!

[twinkly29 in reply to fostairex]

Ah yes there are several of us on here who either live in limbo or have the slow decline after one exacerbation to the next! Welcome to the club!

[fostairex in reply to twinkly29]

Thanks! 🙈 It seems unreal that there is a group of people that can’t really get out of such a cycle. I guess you’ve been seen by a consultant and so on and they haven’t come up with any solutions, since you’re still in the club?!

[twinkly29 in reply to fostairex]

Oh yes, various ones. If you have certain types of asthma you're generally easier to treat with more treatment options available. If you're a weird unicorn then you can be a bit stuffed. I have a pretty good team who are really supportive but not a lot they can offer beyond what I'm on or have tried. Hey ho....you just get on with it, don't you? I'd rather that than have a dramatic "omg this is so severe 😱" all-consuming focus!

[fostairex in reply to twinkly29]

That’s true, no point dwelling on what could be when it’s not possible. I am still living in hope though that there’ll be some easy solution for me! If that doesn’t turn up I’ll have to work on accepting the way things are and getting on with it. Things could be a lot worse!

[Nmstoday]

This tends to be my pattern - have a cold usually then slowly decline over a few weeks/a month getting more and more breathless but peak flow only drops from 550 to 450 or so. GP can't understand how I can do it but be so breathless. I also don't wheeze, it feels like the problems are more deeply in my lungs but I do get chest tightness, etc that is eased by ventolin. I have come to the conclusion that I under treat myself as the decline is so slow - I am currently on pred but needing to come down at 5mg a week after the initial week at 40 because as soon ass I get to 30mg I go downhill again. As soon as you don't have the classic symptoms it is hard to be taken seriously!

[Nmstoday in reply to Nmstoday]

Oh and I get a really horrible dry cough as well.

[fostairex in reply to Nmstoday]

Thanks, it’s really interesting to hear that from you both. I wonder what other medication you’re on? I’ve been hoping that my consultant would be able to put me on some other inhaler that would keep things under control. But I don’t know what that would be...I attended an asthma society IE webinar a few months ago and the Dr said that they really don’t want people to be having to take regular OCS as even (I think my numbers are right) four courses over eight years can thin your bones...so really would like to get out of this cycle but I guess for some people that’s not possible...

[Nmstoday in reply to fostairex]

I'm on the highest dose of relvar ellipta atm plus fexofenadine, I was also using spiriva respimat which did help my normal cough somewhat but the side effects weren't worth the benefit for me. Also have tried montelukast but also had little effect.

[fostairex in reply to Nmstoday]

Ok. Looks like relvar Ellipta is similar to Atectura which I’m on. I came across a new inhaler called Enerzair - it’s by the same company as Atectura, it’s a steroid plus LABA plus a muscular anticholinergic which apparently is a different kind of Ingredient to reduce inflammation. I might ask the consultant about it...but having read about so many different types of asthma, I would love if he could do some tests to tell me which type I actually have, rather than making shots in the dark as to what may help! (My GP just started me on montelukast this past week with my latest course of steroids.)

[Nmstoday in reply to fostairex]

spiriva is a muscular anticholinergic but it started giving me chest pains after I had been using it for a while and a terrible dry mouth. But I know lots here get on well with it.

[Poobah in reply to fostairex]

You could ask for a separate muscular anticholinergic inhaler, also known as a LAMA. A lot of folk on here recommend Spiriva but there's also Eklira Genuair which I found to be more effective for me and didn't affect my blood pressure (a known side effect of this group of meds). So you don't necessarily have to take the additional med in a triple inhaler, looking at a separate inhaler will give you more options.

[fostairex in reply to Poobah]

Thank you, that’s interesting. I’ve read about those LAMAs but I hadn’t realised that it’s the same sort of medication as the extra thing in Enerzair. They market it as though it’s groundbreaking! I suppose it’s just the fact of having all your meds in one inhaler that is convenient. But sure, I’d be happy to take any amount of inhalers if I thought they’d work! Thanks

[Poobah in reply to fostairex]

Yes, the triple combo inhaler is the latest but there are no new meds in them (happy to be corrected if that's changed). Trouble is, if you need extra inhaled steroids you can't increase your dosage using a triple inhaler as it contains a LAMA med. When this was considered for me a year ago there were only two triple combo inhalers available and neither of them included my current meds.

[fostairex in reply to Poobah]

Ah yes I see what you mean!

[fostairex in reply to Nmstoday]

Just noticed now that you said you don’t wheeze. Nor do I, my main symptoms are a dry cough, shortness of breath and chest tightness, and when things get worse then a horrible “drowning” sort of feeling...like the air is really hot and humid.

[Nmstoday in reply to fostairex]

I feel almost like my lungs are full of cotton wool, I am supposed to have a blood test for eosinophils before starting on pred again but because of covid I can't get in to the gp for one and the breathlessness was so bad I couldn't wait so all though I have alot of allergies I'm not really sure wht is going on as I have oly been like this the last 3-4 years.

[fostairex in reply to Nmstoday]

It’s strange how it goes. I had hardly any problems with asthma from about 15-29, my problems started after a viral infection a year and a half or so ago. It’s so hard to get the timing right, too, isn’t it! It would be great to get to appointments when symptomatic and so on but it seems to rarely irk out that way. Thanks for all your replies. It’s nice to chat to people who are in similar situations.

[Lysistrata Administrator Community Ambassador in reply to fostairex]

Sometimes I wonder if viral infection leads to weird unicorn asthma? I had normal mild asthma that I thought had gone away, until I got swine flu in 2009 (aged 23) and it came back as this weird mutant type!

I'm under a tertiary centre but I don't think my consultant wants to acknowledge my type of asthma actually exists (not allergic, not eosinophilic, doesn't respond to oral steroids but likes a bit of inhaled steroids and various other non-steroid drugs), and would prefer to pretend it isn't actually the problem because he can't do much about it. I would prefer to pretend it isn't a problem and he doesn't exist, but you know I don't have a magic wand lol.

😂

Oh and I don't wheeze either, have a weird peak flow (it can be helpful if you know how to interpret it, but I can't get this across), and definitely get the joys of limbo! At least my consultant did helpfully let me have a neb at home. I'm very grateful even if his reasoning isn't at all the same as why I find it helpful.

[fostairex in reply to Lysistrata]

Interesting! I have been keeping my peak flow record on my iPhone which makes a graph of it. I was just looking at it yesterday and actually, even though the variation is tiny at the time, when I look at the graph over the past year all the low points in it are where I needed to take Pred. So even my weird peak flow looks like it might be useful for something too! Ah, to fit into a mould! It would make life so much simpler, wouldn’t it!

[Lysistrata Administrator Community Ambassador in reply to fostairex]

Yes I often wish I could be classic if my lungs must misbehave! I have a much better best than predicted (I think from playing the oboe for years), and very good bronchodilator response even if my peak flow looks 'ok' at the start. When I start to get bad I have a 'parabola' response to ventolin (shoots up high but doesn't last) which gets smaller and lasts less time until I stop responding even to nebs - then I know I need to do something. I can have a dodgy ABG and be bad but still have PF over 50% of my personal best.

I have tried many times to explain this pattern to my consultant, but so far his response has been to ignore it, then tell me I can't be trusted to do peak flow at home (despite several members of the resp team confirming my technique on the same meter is fine) and therefore he can't use anything I do.

[fostairex in reply to Lysistrata]

Oh dear, it’s hard...I’m lucky that although my asthma doesn’t seem to be responding very well to the Combo inhalers etc, it’s never been severe enough to require hospital admission so far. Really feel for those of you who are difficult to treat and have frequent admissions

[Poobah in reply to fostairex]

I don't do very well on the combo inhalers either, or steroid tabs. I'm also on Montelukast and the game changer, Eklira Genuair (an add on inhaler). Eklira is a LAMA med and I've seen improvement since I started it.

[fostairex in reply to Poobah]

Thanks, I’ll ask about that one.

[LHP118 in reply to fostairex]

Oh wow. Thanks for raising this. I am a weird unicorn allergic asthmatic currently on a 3 week review to identify what could be multiple triggers and issues! I have pressure on the lungs (as if a boulder is on it! very rarely vice-like....) and body ache when this is aggravated overnight. I am allergic to dust and dust-mites and it seems that I am also triggered by some chemicals (bleach, limonene in above threshold amounts it would seem), the weather (windy days, storms), pollution (can't go in to London and some other cities).... and the list goes on!

[fostairex in reply to LHP118]

Interesting! I wonder what form your review is taking? Like keeping a diary for allergens, or...?

[LHP118 in reply to fostairex]

Mine is keeping a diary, yes. I am keeping notes twice a day on 1) medication taken 2) symptoms and how intense they are 3) movements - whether I go outdoors, have exercise, 4) impacts such as weather and chemicals (cleaning, make-up) that I am exposed to that I know of (cleaning, moisturisers, make-up and that my family uses) and 5) BP 5 minutes apart.

I've consider all the variables I think are important BUT it probably helps that I only go out once a week for store purchases and an evening walk atm.

[LHP118]

Can we do a few polls across us unicorns to see if we have similarities? Maybe we'll be able to identify some trends? I know it's not going to be scientific in any way.... but it'll be a start?

[fostairex in reply to LHP118]

Sure, this would be really interesting!

[Christ0706]

Hi, I’ve got severe asthma and brittle asthma, I was admitted to hospital on the 2nd of jan as I had a flare up and rushed to hospital by ambulance, All my vital signs was bad and they had to incubate me and put me into a coma that day and put on critical care, I ended up with pneumonia aswell and they had to try and drain my lungs, I can’t remember anything about it, I was woken up on the 18th, I was told my heart had started to pack in on the second day, I can not thank the staff enough as they saved my life and got to see my wife and children again, what I put them through was heartbreaking and feel guilty as it was touch and go for me as I did not feel a thing throughout that time. I was stepped down from critical care and was discharged on the 26th Jan. I had the Dras nurses come out everyday and my peak flow is terrible I’m blowing around 260 where it should be around 380/390, I feel so weak and strange and trying to get my head around what happened I can not thank the NHS so much for me seeing another day, I was COVID free but my heart goes out to all the people who have lost their lives and survived this terrible disease and what other family’s are going through please please take this seriously as I did not expect this to happen to me x

[2412]

Hi everyone ,I've had asthma all my life but not diagnosed until I was 17 .

My peak flo is always between 120 -160 and may go up a wee bit if on pred .But this seems to be the norm for me .On the odd occasion I might get a 200 .My PF for the last few mornings has been 100 .I've started the pred and am using inhalers usual blue one and Symbacort more .My asthma been rubbish for a few years now but I couldn't get my doc to listen to me .So just overdosed on inhalers etc so I could function .Eventually last year it all caught up with me and at last I was seen at the hospital .Things are improving but I've done damage .At one time my doctor was changing my inhalers every week along with steroids and I had no idea what and how much to take .The Asthma clinic have saved me .Lost count of the times I've had to take pred now .I get better for a couple of weeks then start to go down hill but my PF is always pretty low.l have been as low as pf 80 but again this seems to be how it is for me .I have been in A&E a few times but only if I really cant breath or talk and things not improving with inhalers .I have to be really bad before I go to the hospital .Some days I just get so tired and down .Steroid side effects are horrible .Trying to stay positive.