Increase in symptoms but peak flow normal?

[Amy2091]

Sorry for this long thread but I need some advice, I will also be sending a similar email to my specialist hoping she can help me out too.

So at my last visit I was pursuaded to give fostair another go for my eosinophilic asthma as symbicort is not bringing the eosinophilic down enough. (Never got on with fostair previously but I'm encouraged that it will give better results) So, I've given it a go, and although I still cannot use this inhaler without a volumatic spacer (I can use ANY other inhaler with good technique except this one!) but when I use the spacer it is manageable and has been ok for two weeks now and I'm trying to stick it out for at least another 2 weeks until our next app to see if my bloods have benefited, I have found it has made no significant difference until now, neither making my symptoms better nor worse.

I'm query is, over the last 5-6 days I've seen a big increase in my symptoms (more short of breath, struggling to get air in, constant wheeze..), I also suffered my first "attack" in almost a year earlier this week (by attack I can only describe it as a sudden onset of choking and constant coughing - the kind that makes you panic!!), thankfully I managed to get it under control eventually with the use of ventolin and some calm breathing but it was not easy and as you can imagine, has greatly worried me.

My concern however is over these 5-6 days I've been checking my peak flow regular, sometimes twice or three times a day. EVERYTIME I take it it's normal! It ranges from 310 at the lowest, 350 (which is my current 'normal') and even 400.. so this is fine even though my symptoms are not. I also had a lung function test yesterday and felt the same before and after the use of the nebuliser (I was wheezing even after) but results were good (so she said, she wouldn't give me a copy to check but I believed her), I also had an asthma review with my local surgery and had PF checked there in the afternoon, again upto 400 which is really good. (Nothing was changed during this app due to ongoing consultant care).

I'm confused as to what to do.. I have a rescue pack of steroids and antibiotics but don't feel like I have an infection and don't usually commence any steroids until PF is around 290. I will however be sending a sputum sample in on Monday just for reassurance and I'm over due to send it in, my bad.

Do I double up on my preventer to see if this helps? Do I switch back to the symbicort or continue with fostair until it runs out?

My specialist is pretty good and I will send her an email to ask advice until I see her but as it's the weekend it's unlikely she will see it until at least Monday and I don't want to pressure any OOH gps as I don't feel like I'm very unwell, it's just that my symptoms are more noticeable and I'm obviously using more ventolin than is normal for me.

(BTW I have both preventers at present, symbicort on repeat with all my other meds (spriva, montelukast, fexofenadine etc..) but fostair just a one off to try and see a difference, I can request more if needed)

Any advice welcome!!

[twinkly29]

I've had increased symptoms this week too. I think some tree pollens are being annoying (already 😩). I know that doesn't answer your query really at all - but maybe it's not related to your meds change? How one would know that though, either way, I have no idea!

[Amy2091 in reply to twinkly29]

This has made me laugh so much 🤣

[EmmaF91 Community Ambassador in reply to twinkly29]

I’ve been blaming Ciara and Dennis personally 😉😂😅

[twinkly29 in reply to EmmaF91]

They're just nuisances aren't they?! Who invited them?! Go away!!

[Amy2091 in reply to twinkly29]

I'd love to but I've only left the house once in almost a week (I'm on leave!) - maybe it's the central heating that's been constantly running! Ooops

[EmmaF91 Community Ambassador in reply to Amy2091]

Doesn’t matter if you’re inside or not. It’s cause they pressurise our lungs into having issues

[Amy2091 in reply to EmmaF91]

Very true, it doesn't help I'm using them as an excuse to not get out until I have to lol. I poked my head outside the door, saw my car had someone else's garage roof on it, someone else's recycling also and I've lost an entire step from my garden! Come on summer!!

[Lysistrata Administrator Community Ambassador]

I sometimes have this issue - though more usually it's something like 'PF in yellow but ok, goes up to green with ventolin/nebs but may not last'. Especially with my last long post-viral flare - I felt crap but PF was generally ok though it definitely got 'better' with Ventolin. When I went to see the asthma nurse in clinic however, my FEV1 on the little handheld machine was quite low - unsure how reliable those are but she seemed to note it.

I wonder if you had a change from 'ok' to 'really good' on the lung function test? I often find the people doing it don't really go into the finer points and just say 'good' etc (or try to be reassuring which I personally find irritating, but it may be just me).

I also noticed that when I had a 'good' lung function test just post admission, when I felt good, all the 'usual' numbers were fine (I still suspect not my best but fine - I have an unusually high best), but I did appear from what I could tell to still have some air trapping going on.

I did read a paper recently (as part of work - I'm getting asthma from all sides atm!) which said that small airways involvement is probably much greater than we realise in asthma and isn't easy to measure - peak flow doesn't, FEV1 doesn't, you probably need to look really at the 'other' numbers on the lung function test. If those are available perhaps your specialist will be able to view them and advise? (I am jealous of the email access btw - I attend a tertiary centre so have access in theory to advice, but don't have the best relationship and the nurse I usually see/talk to always just wants to reassure me, not discuss things like this).

I should maybe say that my peak flow in general is not the most reliable - I drop and then sit in yellow zone, even having a bad attack in resus! I have to go on how it responds to ventolin not the number, but I appreciate yours isn't doing that either which is confusing.

Not sure if any of this is helpful - it feels more like a thought ramble. I hope you work out what's going on and/or get some useful advice from your consultant.

[Amy2091 in reply to Lysistrata]

Hi thanks for your reply, I haven't actually measured my PF around the use of ventolin which seems like a better idea! Il certainly have a try of taking it before and after later to make a note. I have just been taking it as and when I walk past it (Lol!) today seems a little better but I still feel like I would be "dying" if I did any sort of actual activity - I took a heavy pile of clothes up stairs earlier and that required a sit down and some ventolin (eye roll!)

I've never had a lung function test before this - they all got cancelled due to antibiotic use until my specialist demanded it was just done regardless - She's so good!

The person taking my test was not so good, I only breathed into one machine a total of 4 times, twice before and twice after a ventolin neb. And it actually felt really easy to do.. which I found surprising.. is that normal?

I actually studied COPD at uni a few years ago (don't remember a thing!) and asked her if she could give me a copy of the results so I could have a look at them later but she was like no, definitely not. She mentioned my peak flow was also taken in this machine? Is this correct? It certainly didn't feel like I was giving a peak flow when I breathed out..? She just said everything is within normal range - showing me graph lines (which all looked like they were following a normal pattern) saying there was no change with vention meaning you are fine and all your medication must be working excellently (another LOL moment - I wish) I found this really patronising considering my eosinophilic count is persistently through the roof and my specialist has always given me copies of any results I've had. But anyway, only two weeks to wait I suppose.

I have to say I have been really overwhelmed by the support from my specialist - something I've never received in the 28 years I've suffered. I've never needed to email her before as I see her quite regular atm but she's always been more than welcoming, a certain rarity these days. I'm so sorry you don't get this support, it can really make a difference.

I think I will go back to using the symbicort tomorrow as I feel far more comfortable on this, I just feel like she might think I'm 'making excuses' for not persisting with the fostair

I usually get a flare up whenever I change any preventer medication but it is usually more or less straight away - not almost 2 weeks after starting, I'm just so confused lol!

[twinkly29 in reply to Amy2091]

If you do do your PF with ventolin, I think it's 20 mins after the ventolin for full effect.

I'm glad you've got a good specialist. Frustrating when others don't get that people are different - and don't like it when the patient knows something about their own condition. I get that some people profess to and so demand all sorts, but most of us aren't those people!

I was supposed to stop various meds before lung function (erm no) and also not use ventolin so many hours beforehand (as usual). As I'm on regular home nebs, erm no to that as well. I left it as long as was sensible and thankfully the lung function lady was very understanding and just noted what I'd had.

[Amy2091 in reply to twinkly29]

Ye I lied about the ventolin. I was like na not had any.. but needed it the night before and that morning (my app was due for half 3 but she rang me to come in 4 hours earlier! Ugh) I spent so much wasted time going there for them not to do it that I wasn't no having it done yesterday lol!

Was she suppose to wait for 20 mins before doing the second part of the test? I was blowing almost as soon as she took the mask off lol! 😂

[Lysistrata Administrator Community Ambassador in reply to Amy2091]

If you had Ventolin recently that probably will have affected it but yeah also you're meant to wait at least 15 mins after the reliever to do the second part! I think you might have seen more of a difference if allowed to wait - she sounds like she was being a bit lazy and just wanted to rush you through.

[Lysistrata Administrator Community Ambassador in reply to Amy2091]

I also find some of the lung function techs quite patronising and 'computer says no', and they have sometimes made some inappropriate comments about my asthma/care which is really not their place (one told me off for taking 'too much reliever - they're not sweets, you know!' Err sorry how is it your place to comment, beyond what I take around this test, which I had withheld as appropriate? Then she told me to see a doctor if I thought I needed all that - right, so who do you think ordered this test in a hospital?) :eyeroll: Some have on the other hand been good and patient with me when I'm not good at doing it, but I have some bad memories!

I am actually crap at doing spirometry but know that some people find it easy - though I am pretty good at doing FENO which others find hard (the blow out can be hard either way though if my lungs are misbehaving).

The machine does do peak flow as well yes, but I'm not sure how accurate it is, though to my annoyance my clinic letters often use that number instead of the manual one where I know my best. I usually find any digital device reads higher than my manual peak flow and my best is also better on digital devices. I used to try one of the little electronic handheld ones at home to measure PF and FEV1, but when I showed it to a respiratory physiologist doing the full tests, she said it probably wouldn't be that accurate because the blow you need for FEV1 etc isn't the same as the blow for peak flow, so I wouldn't be getting accurate results for both on the same machine (have now stopped using it as it caused a load of trouble with my consultant and he now refuses to believe I can even do the manual one correctly, despite being told many times that I can, and him seeing that I was the same with his technique vs mine. gahh, sorry for the mini-rant there).

I have had them measure the peak flow separately in clinic before doing spirometry, so wonder if that machine peak flow isn't considered accurate by some?

Your specialist sounds amazing, glad you finally have a good one! If you fancy cloning her and sharing please feel free

Definitely worth trying to see what happens to peak flow before/after Ventolin - I find my pattern is: reverses, reverses but doesn't last, reverses less and doesn't last, stops reversing (by which time lungs are really unhappy, even if the basic PF number is still in yellow).

[Amy2091 in reply to Lysistrata]

I asked the lady doing the lung test what they are actually measuring and she said it's not a spirometer..? Just volume? Why would I have one without this? I'm sorry I've never had one before and know very little about any of it without spending hours digging through some old books. I'm assuming il get all my answers when I go back in a couple of weeks but it would have been nice to know the what, how and why's to things when asked. And if not everything, then... what's the point? 😂Don't apologise for ranting - I too have been there a lot recently. Due to the changes I've had with meds (my specialist would send all info to the gp as well as giving me a copy relating to new preventer and also my rescue pack - I've used this once and had hell trying to replace it despite them having the same info I have!!) it has taken 5 months to get my meds at the same time - meaning for 4 months I would have to go 2 weeks without my preventers every til recently. And THEN - they stopped my entire prescription because I hadn't had an asthma review (I mean, I'm being seen every 4 weeks and things have been changing a lot so.. what's the use? Anyway, had to sit there anyway just to get them) I had a go out at the gp receptionist about this and the prescription issues and her reply was - "well you don't even need them, you only have asthma not COPD..!" Wow!! How I didn't lash out was a miracle. Thankfully after a rant to my specialist after this she was behind me all the way and meds seem to be settled, thank god! Any changes make things so difficult!

[Adjhind]

Me too two days ago I had respiratory crisis but peak flow was normal (390). Anyway in these two weeks is a bit lower because of storm and having more crisis but I know usually I start to feel bad when id around 360. When I have cough and short of air it goes down to 330 instead. It's look like I have diffrrent kind of asthma attack 😂

[peege]

I can see how it's really getting to you.

Everyone starting Fostsair should be given a little booklet on its use as is a MART inhaler. MART = Maintenance and Reliever Therapy. So it can be used as as ventolin would be, the booklet says up to 6 inhalations with 30 seconds between each for an asthma attack. You can also raise your 2 x daily dose when necessary. I take one AM & 2 PM during winter but up it to 2 AM at dodgy times then down to one puff AM & PM in summer (luckily most pollens aren't my trigger).

From your description it certainly sounds as though your asthma isn't under control.

It's a shame if Fostsair doesn't work out for you, I and many others find it's been life changing get but it definitely doesn't suit everyone. I've been on it 3 years and even my fragile thin skin has improved beyond measure after years on Seretide.

If this was me I'd have got out my rescue steroid tablets much as I absolutely hate them.

Get the booklet from your pharmacy or respiratory nurse if you don't have one.

Now at least it's Monday so I hope you hear back from your consultant very soon. Good luck. P

PS try doing your PF before and after your Fostsair dose to see if it actually makes a difference?

[Amy2091 in reply to peege]

Thank you, Ye I've read up on how fostair can be used as smart but I've not been given info on it just now as every time I've had it it's just been "new" to me or a trial. Also I'm not sure if this makes a difference with dosages? My son can use his symbicort turbo inhaler as smart (he's also seen massive improvement since being on this) but I take a higher dose and in a mdi, it says it can't be used that way but I've not been on either of these two meds all that long to give it a go.

It's not been under good control for years which is why I now have regular hospital care. It's so frustrating because I rely so much on my asthma 'plan' that is usually very accurate in line with symptoms. I'm so tempted to start the steroids (bamn goes the diet lol!) as last time I waited 6 days (with infection symptoms) before starting and she wasn't too pleased. But I really don't feel like I have an infection (no extra or discoloured mucus or my usual symptoms of that feeling..)

I'm just so confused with the PF thing, it was only as low as 310 once and was back up to nearly 400 later the same day.

I'm going to spend a few hours in a hot bath later see if the added steam can surpress it some.

She has suggested biological treatments next time but I know so little about them and what I've looked at the side effects aren't always great - although some positive stories too. Just hoping I wouldn't need to get to that point.

The weather could definitely be affecting things too I just never really thought outside the box.

[peege in reply to Amy2091]

Do you know your allergy triggers if any?

From getting very poorly in London for several years, 5 x pneumonia, endless chest infections for years - it seems mostly due to uncontrolled asthma - developing bronchiectasis on top of the asthma. CT scans LFTs, allergy testing for everthing as gp suspected aspergillosis, at least I discovered my allergy to mould. (Thank God it wasn't the beloved dog)! I did Pulmonary Rehabilitation 6 week course. Learnt so much about managing oneself.

P xx

[Amy2091 in reply to peege]

Yes I have quite a few allergies (I've had a nightmare going through tests for these previously! Ugh) thankfully the fexofenadine that I take works amazingly well. Dust is my biggest trigger - it can completely ruin me for days if I come into contact with it, even something as simple as a bed sheet coming off is HELL. Also cats, not great when I own a rag doll but I only usually get a flare up with this when he is in my face (he hates me, so no worries there lol). It doesn't seem to be allergy triggered either unless it's something to do with tree pollen? My allergy results have been quite low for this mind and I don't usually notice it unless there's a change in weather - hot to cold or vise versa. I have never heard of aspergillosis, what is this? I hope you are receiving some good treatment and are more under control now.

I am finally getting there with mine - slowly, but I'm encouraged that my specialist will help me get where I need to be soon x

[peege in reply to Amy2091]

Your consultant sounds amazing. Mine at St George's SW London was so awful I refused to see him and saw a fantastic registrar instead.

All good now having relocated to cotswolds, on the Fostair, loads of vitamins to keep immune system tip top and all the mad hygiene measures to avoid bugs, not to mention the marvellous Buff to pull up over mouth/nose to keep cold air out of airways.

Aspergillus is a fungus, once it's established in the lungs it can be miserable, treated with anti-fungals - luckily I had a mild reaction at allergy testing but mould was the biggie.

All asthmatics particularly children should avoid wet leaves, compost and the like, it can be found often on farms. Animals get it too. Not nice.

Take care, P

[hilary39]

This happens to me all the time. A lot of severe asthmatics experience their symptoms in the lower airways (which is the bulk of the lungs and they are so tiny our inhaler drops often don't reach them). Peak flow measures the large airways.

So what this looks like for me is I can be having a ton of symptoms and be really miserable but only drop like 10-15 on the peak flow max.

[Amy2091 in reply to hilary39]

It's so frustrating. What do you do when this happens to you?

[hilary39 in reply to Amy2091]

When my symptoms flare up I increase ventolin and if that doesn’t work I often have to take a course of prednisone. I started Xolair recently which has been awesome for me.

[Hamscoul]

My peak flow rarely drops but my symptoms are atrocious. My most recent PF and lung function tests are normal but I am starting benra on the 2nd March. I always have to explain this to doctors that see me for the first time. PF and symptoms for me don't match up. My GP's are used to this now which means less explaining.

If I have learned anything from this forum it is that we might all have the same diagnosis but symptoms vary so much. I am being managed by my consultant just now and just been enrolled in a study. I am looking forward to starting benralizomab and hopefully have a more stable period.

Thank you for posting because it helped me realise that my situation is not so unusual.