Great peak flow but I can't breathe! - Asthma UK communi...

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Great peak flow but I can't breathe!

Hello, I would be grateful for advice, please.

Long-term asthmatic (using daily Symbicort/Ventolin) mostly having flares with exercise, colds/chest infections/hay fever. I can become quite ill with a chest infection. Daily OK with peak flows of c 420-450.

My question is that I have begun my 'old' problem of not being able to breathe as well, chest muscles starting to scream etc., etc. I have had a sore throat for five days, so OK, I should start my Prednisolone (rescue pack) to stop the exacerbation into a full-blown attack needing nebulisers etc., etc. However.... my peak flow is absolutely fine!

Should I start the Prednisolone?

I don't seem to be text-book anywhere.

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Do you know how your exacerbations usually go? :)

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I’m not a doctor but the alarm bells would be ringing if it were me. Sooner is usually better than later.

Peak flow will probably go down as the infection takes hold but don’t wait for it to do so....it’s not the main indicator.....those are your reduced breathing power, ‘tight’ chest , aching muscles etc.

Funnily enough, I’m in the same place just now.....breathing getting more shallow, cough increasing and getting more chesty, back n shoulders aching, sats 95 when usually 98. Haven’t checked PF, too much effort, so I’ve decided I’ll start pred in the morning, best time, unless things look up. I’ve lived in hope before and got caught out. Maybe this way I’ll recover more quickly. It’s a familiar road!

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Thanks for your kind reply, Breathezee.

Ii dislike taking Prednisolone and antibiotics and in the past have held off (until I feel I am ill enough........) by which time I really am in a state! I vowed not to do this again so began Prednisolone the morning after I wrote this post. I am now breathing fairly well (won't run for a bus just yet but getting there..) and most strangely of all, I did not develop the wonderful green gunk - having to cough every few seconds to maintain a semblance of air reaching my lungs.

If the above is nothing to do with the type of virus/bacterial infection and everything to do with zapping the inflammation in the lower lungs on the head quickly with the steroid, It is nothing short of a miracle and I have learnt my lesson.

The downside is that I have not slept for more than an hour or two each night and feel hungrier than normal but this is a price worth paying for breathing, almost like a normal human bean!

I hope you are feeling better now, too.

Thanks for your advice.

Regards

Rostom

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Yes, feeling better here too, though suffering a persistent headache, round my left temple. Suspect a dental problem....more decisions!

I too don’t sleep on pred either but have learned it’s a price worth paying. I have to taper down though, I didn’t this time last year, feeling impatient for a sleep....then felt so so drowsy and out of sorts...almost went to a and e about that, afraid of never waking up if I let myself go! Took about three days but got there in the end....not to be recommended....so I stay awake more resignedly now.

Get well soon 💗 xx

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Although feeling heaps better and delighted that Prednisolone can work such wonders, I have not slept for more than two and a bit hours each night so am I bit um, er, tired (plus cross and irritated - my family are keeping clear of me!).

Today is my last day of taking eight and I will indeed taper down but now can't wait until I finish the course. I feel guilty evening thinking that, knowing how I would be without recourse to these fantastic little pills but wish insomnia wasn't a side-effect.

Glad you are feeling better, too!

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Oh yes....irritable moods!

I find some courses cause this more than others, but weepy, angry, depressed can also be part of the scene. I try to warn close family....just in case I embarrass them with a flare up....my husband should be used to it by now but tends to forget, and take my outrages personally until reminded. Not good for marital harmony, but these asthma flare ups make you anxious and fearful anyway. And then there’s the lack of sleep!

As I said, some courses have been much worse than others for me....but there are usually a few tears involved.....💕

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hello breathezee please research magnesium deficiency and symptoms of magnesium deficiency also look at relationship between calcium and magnesium and symptoms of to much calcium in your organs also look at using magnesium oil on your skin

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That’s an idea!

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Hi Robert

Interesting... I have just looked at magnesium deficiency, one symptom of which is an irregular heartbeat, which I also manage to have. I'll delve further!

Thanks you.

Regards

Rostom

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yes good luck and thankyou

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if you have reflux research celery juice it replaces your hydrochloric acid in your stomach

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I'm not textbook either and my peak flow is only useful in limited circumstances. It can drop but it's not really a reliable indicator of what's going on. For example - admission last week, came on suddenly, peak flow at 240 (out of best 630) after multiple puffs of Ventolin, which is really unusual for me.

The admission before that - not my worst but definitely worse than the one last week (HDU involved in the previous one, in Oct) - peak flow wasn't responding much to Ventolin and it had dropped, but was above 50%. I looked at my numbers on the morning I was taken in (and it involved some blue lights and some possibility that I was turning interesting colours causing them to hurry up) - no real indication that something was up, whereas the symptom pattern for the days before was *much* more of a red flag. They were considering sending me home from A&E at one point based on my peak flow and I asked them to wait - then it dropped again, but still not to below 50% best. (Incidentally, the A&E dr on this occasion claimed she didn't just go off raw numbers for PF and then 30 mins later told me the raw number indicated I would be safe to go home. Lucky for me it dropped as I really wasn't.)

Problem is that UK medics on the whole are overly attached to peak flow IMO - Asthma UK knows you shouldn't ignore the symptoms you've been having because of peak flow, but many drs want to use it as an ironclad rule, even though it only measures one aspect of your breathing and it's not always the one causing problems. If you know your body as you seem to and pred normally helps in this situation, I'd go for it - and tell your GP/asthma nurse/consultant or whoever that you have done just so they're aware.

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Thanks, Lysistrata for your help.

Every year, several times a year, I catch what I call a cold. I have a runny nose for ten minutes, a sore throat for half a day and wake up the following day to a stonking chest infection with green gunk in every orifice and lungs almost shut down. Nebulisers, steroids and antibiotics reign. However, at the GP, wheezes are not heard (but I can hear/feel them resonating them as I try to drag air in!) and my peak flow and sats are almost fine. Thank goodness by GP can see that I am ill and treats me accordingly but it is amazing to me that I can be reasonably poorly but have good statistics.

If the type of infection that closed my lower lungs down earlier this week was the same as above but I preempted it by beginning the steroids quickly, I have learnt a real lesson and won't be so tardy about commencing a course of Prednisolone in the future (I have a rescue pack of Pred plus two types of antibiotic).

I have also learnt from you regarding some medical personnel's view of peak flow. I thought that was preeminent (I have taken it morning and night for a year as I thought it would 'show me the way' if I was going off the boil but I now know not!).

Thanks again for your help.

Regards

Rostom

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I was given three criteria to pass before I was discharged last week following an exacerbation to building materials at work ...

1. Peak flows to remain above 350 ( nrm 550)

2. No Nebs fir 24 hrs

3. How I felt in myself - this one was my lifeline.... it took 5 days to achieve all 3!!!! The consultant was the most supportive I’ve ever had .... BUT it was an admission with a silent chest and IV Magnesium administered for the first time !!! This was the first admission I have been taken seriously in the 4 yrs since diagnosis ... I’m not typical , no wheeze, obs all good, peak flow nrm .... but I can not complete sentences and I FEEL really unwell!!!! I know when I’m needing admitting and thankfully this time I was not dismissed !!!

Now just the long weaning program of steroids 😪... and I’m HUNGRY and emotional .. but not stressed 😉...!

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I'm liking for the good consultant/experience not the silent chest etc! Very glad you had someone who listened and considered the whole picture. The first consultant I had last time was like that - the medic I saw on the admissions ward, took it and me seriously and listened. The resp cons on the resp ward didn't give a damn I didn't meet the first two of those criteria (adjusted for me of course) - I was sitting in the chair when he saw me and had no wheeze from 2 secs of listening in one place so I must be fine (I could probably have had an actual wheeze he wouldn't have noticed for all the time he took..). I am an odd one like you but I know that my peak flow ought to respond to nebs and stay there before I go anywhere. They didn't even bother to check, nor to check how i was moving around.

Sounds like you've had plenty of those types of experiences and I feel for you as they are very frustrating and leave you feeling awful physically and emotionally - but if not readmitted no one seems to massively care that they got it wrong. Hope your recovery goes well and if there's a next time it goes just as well.

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Thank you ... it’s the exertion that sets me back following an exacerbation... it takes days to move without needing a neb ... i was so relieved this time to not have to find the extra energy to fight my corner !!! The consultant was on a general ward ... not respiratory ... but he has dismissed me prior ... but the asthma nurse did also back me which was a plus this time !!

Would be nice if we all fitted into the square box each time .. but unfortunately some of us are not square shaped and “normal”!!!!

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Yes I'm the same - the recovery can be much harder if they don't get me to a reasonable point and work out whether I am actually managing off nebs, which I don't have at home (do you?). I get that the recovery has to continue at home but that doesn't mean chucking me out too soon is useful - and that *is* why they have the guidelines they like to ignore! Glad you got the asthma nurse to back you up - I had a good asthma person on my side last time but I suspect the cons just ignored her.

I think I am the shape of a Rorschach blob lol. But I'm not so weird that they should just ignore guidelines. I've been told before with better experiences that nebs should push my peak flow up and it shouldn't drop soon afterwards. That's something that is fairly standard for asthma, and it fits what happens for me (going into an attack my inhaler helps less for shorter periods and the first few nebs often do very little). Yet the advice that any asthmatic should be maintaining peak flow post neb gets ignored - in June it dropped massively after they made me do a walk, but they said that didn't matter as sats hadn't dropped and then said I'd told them to ignore my peak flow when I came in. (Err...I did NOT say that!)

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I do have neb at home but my consultant does not want me using it at all .. if I need them I need to be in hospital .. and I agree !!!! It’s very different to COPD!!! Saying that last week I wasn’t allowed home if I needed them but come Saturday morning the morning reg cane round ( different one ) and told me to go home and use them and then withdrew the other meds the consultant had prescribed !!!! So at the point I was happy to go and do what I knew I needed ..... saw my GP !!!! Very supportive as always .... I know I recover at home and I know when I’m ready for discharge so that helps !!! It’s the exertion that puts me back ... machine says one thing my body tells me otherwise !!!

Yes I think we are just looked at as “difficult” at times , even Resp consultant is not useful anymore .... I’ve now been told to manage my condition locally and discharged from London ... I’ve always excelled at the lung function and spirometer tests because I’m never unwell when I am seen !!!!! I react to environment stuff and get infections ... I am really well in between .... and having never had issues until 4 yrs ago I guess my lungs compensate well !!!!! So currently I am happier not having the added worry of London appointments to be told “nothing wrong but hey keep using inhalers just in case “!!!!! I am relaxing a bit knowing I can just talk to GP who sees me when I’m ill and knows how unwell I get .... he said this week my asthma is very brittle at the moment !!!!

Ah well ... don’t we just love being the ameba blob !!

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I had/have very similar symptoms to you which started in april after a very bad tree pollen hay fever reaction which dose not affect my asthma.

I had shortness of breath, sore throat (especially in the morning), my inhalers weren't really working and my peak flow was almost normal when I had SOB.

The GP was sure it wasn't my asthma, which was a surprise to me, and the closes fit for the symptoms is laryngopharyngeal reflux (LPR) also called extraesophogeal reflux or silent reflux.

Most people have no reflux symptoms and there are many other symptoms, you should Google it to see if it matches your experience.

There are some studies that estimate 50% of asthmatics have some form of reflux.

ncbi.nlm.nih.gov/pmc/articl...

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I found that when this happens with me the tell tale sign to tell the two apart is when the flare up happens. If I start to get breathing problems within forty five minutes of eating or drinking, which then improves for no known reason over the course of the next two hours (or until I eat or drink something again) the chances are very high with me that it’s reflux that’s causing the problem. I have also found in the past that certain foods cause more problems than others.

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Mine definitely isn't like that, the SOB can fluctuate but never really goes away and if on the few occasions I notice other LPR symptoms my breathing will get worse a few days later.

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Hi SimpleSimon

I do indeed have reflux and take daily Omeprazole - which came in hand to take before the Prednisolone!

I'll discuss this with the asthma nurse during my next visit.

Many thanks for your reply.

regards

Rostom

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LPR (silent reflux) is different from reflux or GERD and the small studies done show it is not treatable with PPIs. The asthma nurse will almost definitely have no idea what LPR is.

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I was told once, when I asked a similar question on the forum, that it’s worth remembering that peak flow metres will not pick up inflammation in the minor airways. So you can feel tight, feel that your asthma is flaring, but if it’s your minor airways that are affected, your peakflow probably won’t pick up on it.

I agree with Breathezee, the alarm bells would be ringing if it were me. It might be in the minor airways at the moment, but that could change and it could happen quite quickly. Do you have an oximetre? If so, check that and see what your oxygen saturation levels are.

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Hi MaggieHP

I will be buying an oximeter. My GP suggested it last spring but I have not been ill since so it was forgotten about. .........! My sats only dropped to 98 when I really couldn't breathe much at all,. How low should they go before one really has to worry?

I guess an oximeter is another tool to help decide what to do in the event of a flare/forthcoming infection and I will look for one.

Many thanks for your suggestion.

Regards

Rostom

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My GP once told me that in the area where I live they don’t like you going below 95 (mind you, this was nearly ten years ago and thoughts may have changed on that one). Others on the forum have given a figure lower than that. Best thing to do is to ask your GP. He/she suggested an oximeter originally, so ask him/her for advice on that one.

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For a pure asthmatic the ‘normal’ acceptable levels for o2 sats is 94-98% (in the UK anyway). Anything below 92% is usually seen as very serious. Lower ‘normal’ levels are usually for those suffering COPD (88-92%).

Usually you can work out your normal and compare against it. I’m usually 97-98% so if I start getting 94% I know I should be doing something 😅.

I hope that helps explain things and that you’re starting to feel better now Rostom x

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It’s a difficult one this in some ways. I recently had to undergo surgery (not asthma related at all) and when I woke up in recovery breathing was hard. Groggy though I was I told that to the attending nurse, only to be reassured and told that my oxygen sats were fine. I was certainly on oxygen at the time. I do know that they put a tube down my throat to guard against the possibility of reflux (a known potential issue for me) triggering an asthmatic response whilst under the anaesthetic (it made swallowing distinctly uncomfortable for twenty four hours after the operation) and I wondered later if the after effect of that was what was making my breathing less easy than usual. I still think the oxygen feed was the only reason my sats were fine on that occasion. After I arrived back on the ward I was aware of it being taken away, and was later aware of it being put back on.

Once I had recovered rather more and was off oxygen I was interested to note that even when my sats were down at 96 my breathing was reasonably OK. Contrast that to ten years ago when I was at the very low end of 96 and ended up on pred. because my asthma was spiralling out of control. On that occasion, however, I also had a very nasty infection which wouldn’t have been helping things at all. The pred and a hefty dose on antibiotics helped to sort things out and forty eight hours later I felt much more in control, if as weak as a kitten.

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Hi EmmaF91

Thank you for your informative reply. I'll go oximeter hunting and now know the parameters!

Regards

Rostom

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My peak flow doesn't often drop below my normal of 450 these days, even when I'm feeling quite bad. I was once told that this is probably because I have a big lung capacity because I do a lot of exercise. Hope this helps!

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Thanks, JoBo1979. I have now ascertained that checking my Peak Flow twice daily (as instructed) is more or less a waste of time and effort!

I had promised myself that this year I would try and be more diligent and check symptoms of an infection (which leads to my very poor breathing) faster. I was previously in the 'oh, let's wait and see camp' which made everything harder to treat. So.... I thought that by recording my peak flow, I would have a heads start on anything untoward stirring deep down...... However, I know know (thanks, everyone!) that this is NOT the case and that health professionals should realise this too. One reason I have waited, before commencing my stash of Prednisolone and antibiotics, is that my Peak Flow was fine, so my lungs must be OK too. Not!

I am now taking more care of actual symptoms and am not relying on my Peak Flow as an indicator (harbinger of doom!).

Thanks for your reply.

Regards

Rostom

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Really good to know you've got some clarity on the issue. It is sometimes hard to know when something is starting or not, and whether you should take action, isn't it? I guess erring on the side of caution and listening to your body and many different factors rather than just one is the sensible way to go. Sounds like you know what you're doing! Take care.

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Start the prednisolone if you wait could get worse.

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By my comment is you know your asthma and pfr does not always indicate. You can wait but I know if my PFR goes below 300 I feel crap but professionals will say that is not too bad

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