After nearly 4 weeks on 40mg pred and several weeks where I struggled to blow a peak flow above 400, even my lowest of three peak flows is consistently above 400. This has been going on for about a week. But strangely as my peak flow has improved, I've also started having more easily recognizable symptoms. For example, yesterday I was having isolated (non-spasmodic) deep coughs that ended in an audible wheeze. And I'm much more aware of individual breaths here and there that require a lot of work to move air.
When I check peak flow during such symptoms, it is still above 400.
One way to explain it is that when I'm breathing better overall, individual difficult breaths are more noticeable. Perhaps as inflammation recedes difficulties due to intermittant bronchiospasms rather than general inflammation? But I'm not sure.
Have others found that symptoms actually become more noticeable when things are on the mend from a long period of difficulty?
not quite the same thing, but as a few people have discussed peak flows arent that great, i personally believe if you have the technique right you can get a 'good' score almost under any circumstances, i think i can do it with my mouth/throat or something.
its not quite the same thing, but i find my peak flow starts to go up long before my symotoms start to improve during a hospital attack (tbh this is the only time im good at doing my peak flow repeatedly) i can still have an audible wheeze, be severly tachy and SOB, and increasing CO2 levels, and yet my peak flow is continuing to go up with treatment, clinically i still think i am not improving (and possibly still on the decline) but my peak flow is going up. i cant really think what might cause it. i wondered if when asthma starts getting really bad the bigger airways start to constrict and coz your little airways are so tight it doesnt make you feel much worse but i guess it could still reduce peak flow, so this can beging to improve as treatment starts to kick in, but little airways still tight so still feel really rubbish! just a theory!
i have said a hundred times to my consultant, I DONT CARE WHAT MY PEAK FLOW IS!!! if my peak flow is 100 (PB 600) and i can walk down the hall to get some snacks with ease, im not gonna be taking my inhaler and going to hospital. if my peak flow is 500 and i can barely talk, thats when i want treating! My consultant firmly disagrees, but there you go! hope you feel a bit better soon! you got a docs appt anytime soon where you can discuss this? you dont really want to be getting worse!
Could it be everything is loosening up in your airways and beginning to move? Rather than being tight and constricted?
Soph - I'm currently in the USA and my doctor is in Israel, but i should probably email him and ask his opinion. In any case I'm due to make an appointment with him when I get back from the US, hopefully sometime at the beginning of next week,
JF - everything losening up? I think that is possible.
Thanks, Stray for sharing your experience. I'm still trying to figure out my own patterns as regards symptoms and peak flow. I don't even really know what my personal best is because it was years ago the last time I regularly did PF and I don't know the calibration of the PF meter I used back then. During this ""exacerbation"" (is a three month and counting illness an ""exacerbation""?) I did manage to blow a 460 about a month ago, but even then I still wasn't really 100%.
You raise an interesting point about which comes first and second - symptoms vs peak flow. There does seem to be a rough relationship between the two in the sense that they eventually trend together but which comes first and which comes second is hard to tell even with my being fairly careful about data collection. However, this also likely reflects the length of time I've been able to monitor both peak flow and symptoms. I just started careful monitoring of both PF and symptoms about a month ago just before a significant downturn. This is the first real sign of sustained improvement since then.
Before that I was only monitoring symptoms because I'd lost my old peak flow and was waiting for my husband to bring one back from London. Of course, you can get peak flow meters in Israel but you have to go straight to the medical supply company and deal with postal delivery - for some reason they haven't really caught on here in Israel so they aren't usually found in pharmacies. it just seemed easier for me to ask him to go pay a visit to Boots and bring one back.
Judging by this AM's peak flow, the trend line is continuing upward - for the first time in over a month I blew 440-440-440 this AM. For me the lack of variance is pretty significant that this is a real 440 and not just expert compensation due to singer's training. Also last night I had the first real ""hey I can really breathe"" breath in about a month and a half. I'm not even sure how to put the difference into words but the breath just feels different.
As for reliever - I'm instructed to use either symptoms or peak flow. My doctor understands that for me sometimes symptoms are more reliable than peak flow because of the whole singer/expert breather issue. But I also tend to acclimate/compensate for breathing problems well and that makes it hard for me to see symptoms other than general soreness of breathing muscles, irritated lungs or tiredness - none of which ""feel"" like a breathing problem the way a cough or forced exhale does. Peak flow dropping/refusing to rise can sometimes clue me into problems that are there but simply not noticed otherwise.
Yup Stray i lived in rural spain for a year and otc pred was a life saver
Just thought id add my method.
Its when im going on a purely symptom based thing that may or may not correlate pf as others have said.
I take my symptoms and have sorted them into an order from lesser to worse. So for me:
Tight chest is basically permanent and therefore not very useful for evaluating.
Breathless is often but can be a start of something so time to do pf and maybe vento.
Wheeze defo means pf and vento and if it lasts setting up gp appt.
Cough is usually chesty or really irritaded airways or infection so nebs and gp or AnE asap.
Anyone else have a personal line of importance?
Rose xx
I know what you mean about that Rose.
Mine is:
Dry cough - often have this on and off so tend to ignore unless it's getting more and more frequent or combined with other symptoms
Tight chest - take ventolin regularly to relieve this as it usually means things are getting slowly worse
Chesty cough - when I'm getting worse cough turns into a deep bark so often end up seeing GP for pred as this wakes me up in the night
Shortness of breath - I get severely short of breath with an attack so end up multi-dosing ventolin and either going to A&E or OOH gp usually. Luckily doesn't happen too often. I can put up with a persistent cough and tight chest but when combined with shortness of breath as well know I need to get help.
I came back home from the US to Israel on Sunday and saw the doctor on Monday.
During the rest of the week in which I first started this thread, the peak flow continued to improve and for the first time since the beginning of January, I actually blew a 460! Whoot! I even had a few days where even the worst of three blows never went below 400. Unfortunately, things started going back downward on Friday and the plane trip home last; weekend didn't help matters so I'm going through yet another dip.
He didn't seem too worried about the on-going symptoms or the dip in peak flow at the end of the weekand decided to step down the pred by 5mg to 35mg. This is good because last month he was thinking of keeping me on 40mg until I see the pulmonologist at the end of this month.
In the main I'm glad that the pred is lower, but I had a brief bit of a period of gripping because my doctor was willing to reduce the pred even with on-going symptoms. I really wanted to see if we could get things all the way to actually being healthy with no symptoms.
But when I mentioned this to my doctor he just said ""when are you seeing the pulmonologist?"" and ""well, you have complex asthma"" - I didn't press him on what he meant, but I interpreted it as ""don't expect right now to be completely well, because we really need more input to make decisions and won't have it until you see the pulmonologist.
The dip is still on-going today Wednesday) - peak flow doesn't seem to want to go above 420 again even as best of three. But at least now know that I wasn't just imagining that 460 at the start of January.
Also so far the dip isn't as bad as January: going out shopping yesterday didn't cause me to need lots of ventolin to handle mini-flares as it did in January - once I got past the initial start-of-exercise noise, I was breathing reasonably well the entire shopping trip.
Glad to hear things seem to be looking up for you Beth. I hope things stay as well as poss till cons appt and they manage to sort you out with a good plan. Take care.
Rose xx
peak flows ...what can i say last year i blew 350 on a good day ...this year im blowing 240 on a good day and never feel well so yes the peak flow is my amunition for ther doctors to know im not as well as i used to be
Rose - thanks for the well wishes.
The truth is that even though things are going better I'm feeling up and down about it. Up because I'm not nearly as sick as January. Down because I'm not all better and I have this irrational fear that if someone sees that I'm better, they'll ignore what isn't better yet and then I'll be stuck forever in the land of not quite well.
Of course it isn't really that way. It's not like my doctor said ""ok, everything's under control now so we can stop the pred"". If my doctor really thought everything was fixed we'd be tapering. This reduction is just a reduction. He hasn't specified a point when we go down to 30mg and he gave me a prescription that amounts to 30 days on 35mg. So no one is in fact saying ""ok, all done -- no more problems"".
Today ended up being a sofa day because I was so tired. That was really frustrating.
However, I think I might have done that to myself by refusing to use ventolin all day other than the neb I did in the AM to pre-treat for seretide. On and off I was having short episodes where I'd go from really tired to pounding heart to notably difficult breathing which would then resolve. I don't have a heart condition so I'm guessing those were little bronchiospasms. I rationalized that I didn't need the ventolin because each incident went away on its own.
The underlying problem is that I need more structure that will force me to up my activity level when I'm well enough. I've got to think about how to create that for myself. I really dislike taking medicine so if I can get away with it I'm inclined to tolerate tiredness and breathing problems over pushing myself and using ventolin to carry me over the rough spots. But when I do that asthma becomes the focus which isn't good at all.
On my trip to the USA I had to be at the courthouse every day (I was a witness for a trial) so I couldn't just sofa surf. I used a lot of ventolin, but I actually felt better about the asthma because it wasn't the focus of my life.
Sorry to hear about the ups and downs.
I dont think the fear of being stuck in limbo is irrational at all. Tbh although i have had over 30 intubations etc i pften find the worse times to be the non dangerous but v annoying symptoms...that other people dont always notice or know about that seems to make it even more frustrating.
I also get that you might need to make yourself spme sort of timetable to work to to feel happier about yourself and your life and feeling you have achieved something concrete each day. I find it difficult at the mo with my home studying to track my progress in the programme as it is so irregular and erratic.
Hoping you get to 100% well very soon! Take care.
Rose xx
oh I agree. Admittedly I have been all 'limbo' so perhaps I'm not in a position to comment or compare. But I often found the doctors were focusing on 'well you're not going to have a severe attack so don't worry' while I'd be saying 'yes, I'd worked out that's unlikely but I still have a lot of symptoms day to day which restrict things' and they weren't so worried about those while I was.
I know nothing at all about the Israeli medical system. However, I'm just wondering if you have respiratory physios or the equivalent? I realise you don't seem to have the breathing pattern issues I do, but I've found the physio very helpful with the exercise, which is partly asthma as well I think (it's certainly always been a trigger even in the 'quiet' period and when I was younger, and yesterday I was having trouble on the treadmill though my breathing pattern was apparently fine, which was helpful in terms of working out what is what and the difference in the way they feel). It can be really helpful just having someone who's an expert on breathing advise you on what you can do and how to start and build up and what are the signs that you need to slow down or not push yourself, and I've learned a lot from my physio. So would it be worth asking your doctor if you can see someone like that, if possible?
• in reply to
Rose - thanks for the reassurance. Being reminded that one's fears aren't so crazy after all helps.
Philomena - I don't think it matters how bad. Once one gets to limbo land, it affects one's life - so speak away. And sympathy really does help.
It would definitely help to have some guidance or other help about pacing myself, etc. I don't know either what is available here in Israel in that regard because my asthma was never this bad before and there is no equivalent of Asthma UK to guide one through the Israeli system.
We also have a tiered system like in the UK - there are some things the GP can do and some things only a specialist can do. My GP can do more than in the UK, i.e. he can prescribe a nebulizer or maintenance pred, but there are still limits to what he can do in terms of ordering tests or second line treatments. For those things, we need to wait on the pulmonologist.
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