Last night I had a very helpful phone consult with my GP where we revisited the when-to-use-reliever issue. I was really happy at the beginning of February because things looked like they were getting better, but then the Friday before I left the USA, things started getting worse. Despite this my doctor decided to reduce my oral pred from 40mg to 35mg when I returned from the USA.
Ten days later things never turned around and were in fact worse – not quite back to where I was mid January when we were trying to taper the pred and got down to 20mg, but getting close. Night before last I woke up in the wee hours and it hurt so much to breathe for a few moments that I wasn't even sure I could concentrate enough to put together a neb. Fortunately, it passed quickly and was a non-issue but I figured enough is enough and decided it was time to call the doctor.
He didn't want to change the pred because I'm already on 35mg. So I went onto my next question: ventolin use. I've had this theory for a while that the reason why I just can't seem to get over this post-cold exacerbation which started in October was that I was constantly irriatating my lungs and adding to the amount of inflammation. The pred does work, but slowly. In the meantime my inflamed lungs are hyper-reactive so I keep having lots of flare-ups – some nothing more than a nuisance and some that are much more serious and take a long time to recover from.
I generally only use reliever for (a) things that bug others like coughing in public (b) symptoms that are growing worse (c) things that make my ribs and abs sore – I've found that having sore accessory muscles makes me more vulnerable to a severe attack (d) breathing that actually hurts rather than being hard or annoying. Anything else I usually try to ignore.
My suspicion is that one reason why I'm not getting better is that every time I ignore symptoms even very small ones and let them ride, I actually increase the irritation and inflammation in my lungs. If pred worked as advertised for me, that wouldn't be a problem – the rate of improvement from the pred would outweigh those minor irritants. However, because pred works slowly with me, I either slow down an already slow process, or even lose what I've gained and move backwards.
He agreed that that might well be going on – actually I think he thinks that is exactly what is going on. Which got me to my next question. A while back he told me he wanted me to use ventolin at first symptoms, but I thought it meant first symptom that looked like it could lead to a significant exacerbation. It turns out that he really does mean ""first symptoms"" and not just first symptoms that get worse or first symptoms that seem serious rather than just annoying. And indeed he means slightest. I asked him
Me: Even if I think its stupid to use ventolin for something so trivial?
GP: Yup, even if its stupid.
Me: Even if it hasn't started to worse yet and I don't know if it will?
GP: Even then. At the very first sign.
Me: You do realise I might be using a lot of ventolin if I do – a lot more than 2 puffs every three-to-four hours?
GP: Yes
So I've been trying. It does seem to help me feel better. And though I'm using a lot more ventolin than I usually do: 27 puffs=14 incidents(!) in the last 24 hours plus one unplanned neb (I always have two a day as a pre-treatment for the ICS so this makes a total of three nebs), it isn't as much as I first thought I'd use and I feel a lot better overall, probably because I'm breathing better in between.
So I'm wondering if anyone else has actually been given a formal go ahead to pump on the ventolin this often and if so why? Does it help? Just kind of looking for context I think.
Also if you have both an inhaler and a nebulizer, when do you use one or the other?
I havent got an unlimited permission forither venyo or nebs. But i do use both and fpr me i use 3 nebs a day as standard. If symptoms first line of attack should be vento. If after 10 puffs its not getting better then an extra neb...
This is a really interesting topic. I have learned over the last 3 years to nip my symptoms in the bud, otherwise the ventolin is less effective. I record my ventolin use daily but at the same time use what I need. E.g. I am needing my inhaler at work every 2-3 hours at the moment as I have just got over a respiratory virus.
Unless I am unwell or in a flare up I use my nebuliser when required. I don't have a portable one so when out, use my spacer but it doesn't always work well. When I see the asthma nurse next month I need to clarify how many puffs in a spacer that I can use as 10 aren't always enough. I use my neb at home if I reach 5 or 6 puffs in the spacer and it's not touching my symptoms.
One thing I must be more aggressive with is using 1 puff every minute in the spacer, I usually try and do 1 puff every 5 minutes because I want to take as few puffs a possible but there are times I need to reduce that time and see how it goes.
Edit: Just to add, I can use my nebuliser up to 4 times a day and am supposed to limit inhaler with that to 2 puffs 4 times a day. I had to use slightly more inhaler than that when ill recently.
Hi Beth
One Dr I've seen recently told me to be really free with the ventolin and to not be afraid to use it - it'll do me no harm. She said to take 4 puffs at a time instead of 2 if I got SOB to really sort it out. I have to admit it has helped a bit - although I still don't like to use it too much - I find it really hard to decide when to use it if my symptoms seem to be just starting up as sometimes the SOB can calm down on its own but other times I really need the ventolin.
What you've said has really made me think though - maybe I should be taking it everytime as it may help control the progressive worsening of my asthma I get throughout the day if I keep trying to do things.
Maccy, Rose, JF - thanks for your responses
Unless I am unwell or in a flare up I use my nebuliser when required. I don't have a portable one so when out, use my spacer but it doesn't always work well. When I see the asthma nurse next month I need to clarify how many puffs in a spacer that I can use as 10 aren't always enough. I use my neb at home if I reach 5 or 6 puffs in the spacer and it's not touching my symptoms.
I do have a portable one an it has a pretty nice carry case as well, but I only take it with me if I'm going to be out of the house for a time when I'm scheduled to use the nebulizer. Otherwise it is just easier to use the inhaler.
Even at home though I prefer to use the inhaler for a couple of reasons: the nebulizer takes time to set up and use; also if my lungs are really irritated all those deep breaths are annoying and can temporarily make things feel worse. My nebulizer has one of those one-way vent mouth pieces - its suppose to help make the neb go faster and ensure more medicine gets in the lungs, but it makes actually taking the neb more work.
Interesting that 6 puffs is your cut-off for neb vs. inhaler. What is your reasoning?
I really should ask my doctor next time I meet with him, but at present I'm going by the idea that 6 puffs within an hour indicates a more entrenched problem that might better respond to the nebulizer. Most of the symptoms my doctor wants me to deal with go away with 1-2 puffs for at least an hour or two and sometimes much longer. 6 puffs is a lot for me.
although I still don't like to use it too much
I don't really like ventolin all that much either as frequent use makes it hard to do tasks that require holding thumb and forefinger together without shaking. The beta antagonist in ventolin aggravates a normally barely noticeaenble familial tremour.
Way annoying as this includes things like fishing contact lens out of their holder or keeping a spoon steady on the way from sugar bowl to tea cup.
- I find it really hard to decide when to use it if my symptoms seem to be just starting up as sometimes the SOB can calm down on its own but other times I really need the ventolin.
I also find it hard to tell with symptoms. In my case though my doctor doesn't seem to even want me to play the ""will it grow or go away on its own"" guessing game. If it's there at all, he wants me to hit the ventolin.
The other thing that I've had to work on (and am getting better at) is even noticing that I'm having problems. I used to not think I was a poor perceiver, but when I compare what I'm aware of now to what I was aware of two months ago, I can see a big difference.
There are so many different ways my lungs try to tell me ""yo, we've got a bit of a problem here"" that it's confusing. SOB out of proportion to exertion is just one of many.
I think I've gotten fairly good at catching things when I'm out walking about, but when I'm busy writing or reading or looking things up on the internet, I'll notice things for a second, go back to work and forget about it without ever using the ventolin.
Many symptoms for me are minor and not at all like an ""attack"". They'll happen on and off over the course of an hour or more if I don't treat with ventolin, but they don't pile on all at once into some sort of obvious crisis which is part of the reason they are easy to ignore:
*Abs working hard along side of diaphragm even at rest and when not speaking
*ribs/sterum/gap between ribs below sternum and associated muscles sore
*burning feeling in lungs when I breath in or out
*heart rate up along with quivery feeling in lungs
*feeling like rib cage is tight or pressed in - not an elephant on the chest but maybe a small dog?
*pulling in on sterum or doing a forced exhale so I can get a deep breath
*breathing shallowly because a deep breath is too much work
*stopping work and lying down/zoning out because it seems easier to just concentrate on breathing
*losing support in my speaking voice so it fades in and out - big problem for a couple of my friends with hearing issues
*isolated dry but deep coughs
*this funny sharp inhale/forced exhale that I suspect is meant to get rid of stale air trapped in the lungs and makes people stare if I do it in public (ugh)
*wheeze at end of occasional deep exhale even if exhale itself isn't difficult
*a kind of stacked exhale that I think may be my bodies idea of a yawn when breathing isn't so great
...and probably a bunch more if I sat down and thought more about it.
There are so many that just listing or taking mental note of them makes me feel like a hypocondriac. However, clearly that is not the case since my doctor actually wants me to pay attention to all these silly things, so of course I have to notice them.
A friend of mine who thinks I live in my head too much has a different opinion of this: she said to me a couple of weeks ago that the one good thing about this bout of asthma is that it is actually making me listen to my body more.
I came to the cutoff point of about 6 puffs because I was originally prescribed the neb 4 times a day with no advice to reduce it or how to reduce it. As my asthma calmed down, many times 1-4 puffs of my inhaler would sort me out so if I hit 6 or more puffs I know it is a more severe exacerbation and the neb would sort it.
Sometimes I don't notice I am SOB, my sister and one of my colleagues at work quite often point it out to me!
Although I do have an action plan, it really isn't any help as it goes by PF and my PF doesn't drop to the extent that I get symptoms, so it isn't much use as a measure of when to take action.
My GP has told me to take ventolin up to every 2 hours, and if 2 puffs every 2 hours isn't helping I need to see a doctor/go to A&E depending how severe symptoms are. However, I have to say I ignore this advice fairly often, because if I didn't I'd keep seeing her when there was really nothing else she could do, or I'd be on pred more often than I'd like or feel I need to be.
So when I'm having a flare up, I take as much ventolin as I need for my symptoms to go away. If I've been doing this for a few days and things are still getting worse, I see my GP for pred. She usually asks how much ventolin I've been using and tells me that's fine. She also told me that if my symptoms get worse quickly (so that I can't speak) then I can use 2 puffs every 2 minutes up to 10 puffs. If that doesn't help I have to go to A&E.
If I'm not having a flare up, I tend to leave using ventolin until symptoms are actually annoying me, not just if my chest is a bit tight. When I'm having a flare up I do literally act on every symptom and take as many puffs as I need - last time I had a cold I was on 6-8 puffs every 3 hours at the worst point, but it did help me avoid pred - first time I've ever managed that when I had a cold.
in reply to
If I'm not having a flare up, I tend to leave using ventolin until symptoms are actually annoying me, not just if my chest is a bit tight. When I'm having a flare up I do literally act on every symptom and take as many puffs as I need - last time I had a cold I was on 6-8 puffs every 3 hours at the worst point, but it did help me avoid pred - first time I've ever managed that when I had a cold.
That's interesting. I wonder if there are different standards depending on whether there is an active exacerbation going. I think I'll have to revisit this issue with doctor once this exacerbation finally ends (started with a cold at the end of Oct 2012 and hasn't quit for nearly four months.)
Every single symptom is actually a PTA (pain in the a--). I really don't get why some doctors are so afraid that people use inhalers frivolously. Fortunately I've never met one, but I hear of them from time to time in some of the posts here.
This is all very interesting!
I have been told the opposite, because I have the breathing pattern thing as well so I am meant to do breathing exercises first to see if they help (though physio said - if I'm having issues breathing out I probably just need to take my inhaler, it's when I'm not sure/can't tell that I should do breathing exercises and wait if I can).
This all makes sense to me given what I have going on, and in fact I had been doing it anyway for a bit even when I didn't think I had any breathing issues, just to see if I could get away without taking the Ventolin - though I did find it confusing for a while. However, annoyingly I don't think my cons necessarily believes me when I say that yes, I do try not to reach straight for the Ventolin now, so I don't know if he thinks I take an unnecessary amount even though I try hard not to - he thinks my asthma is more controlled than I do, which is something I am going to have to raise, ugh, at next appt - so not looking forward to it. I don't think he thinks I use it 'frivolously', but perhaps thinks I use it more than I need, and even had me convinced because I used to be quite haphazard about taking it, but now I really do think it is a good indicator of how often I actually have asthma symptoms that need dealing with.
Am wondering if it would work during a flare-up: atm I am waiting for a shorter time before taking it because I feel a lot more like I need it, more quickly, and also I can tell that breathing out is harder, but had been trying to avoid too much because I don't want to take loads! Probably ends up being 12/14/16 puffs over a day which doesn't seem unreasonable for a flare-up, though at times I do feel like I need 4 at once then it's better for longer than if I take 2 then I need more soon after.
I don't really know how much is a signal of 'too much, do something' though. I guess I need to get this pred issue sorted. I also am not brilliant at noticing my own symptoms always, beyond the obvious, and I thought I could hide them. My junior doctor housemate, however, who is admittedly more observant re this sort of thing than the average person because of his training, can usually tell when I'm having issues even if I'd thought it wasn't visible.
Philomena - was hoping you would hop on board this thread!
That makes sense what you say about needing to learn to tell apart inhalation vs. exhalation difficulties. Glad to hear it is getting easier.
he thinks my asthma is more controlled than I do, which is something I am going to have to raise, ugh, at next appt - so not looking forward to it.
I always feel like I'm disappointing my GP when I tell him what we're trying isn't working as well as he hoped. He wants so much for things to work.
Also at the beginning it was hard to get him to believe I really was as symptomatic as I was saying. Up until just before Christmas (about 1.5 months into this exacerbation) he would keep saying things like ""if you really are having symptoms that often..."" rather than simply acknowledging it.
I think sometimes one has to just keep driving home the point until it sinks in.
Hope your meeting goes well.
in reply to
Philomena - was hoping you would hop on board this thread!
Hehe yes, I am definitely interested in this question because it really confuses me too!
That makes sense what you say about needing to learn to tell apart inhalation vs. exhalation difficulties. Glad to hear it is getting easier.
I think it is. It did help that when I was on the physio's treadmill last week and really feeling I had a tight chest and SOB, she said 'lovely breathing pattern' and then afterwards 'I could hear you were restricted', so I thought, aha, that feeling is the asthma then. At the moment I am also finding that singing is hard work - I'm doing a lot as I'm depping for a choir, and it's actually taking a lot more effort than usual to push the air out, though I am pleased with the end result and that my vocal cords are not getting tired like they used to - it's my lungs that seem to be straining rather than my voice if that makes sense. I did some work with a vocal coach/Alexander teacher before Christmas and I think that is paying off. This might also explain why my shoulders are feeling more tight than usual - I suspect I am using muscles I shouldn't be to push air out when singing, so it's probably not brilliant technique still but better than before.
he thinks my asthma is more controlled than I do, which is something I am going to have to raise, ugh, at next appt - so not looking forward to it.
I always feel like I'm disappointing my GP when I tell him what we're trying isn't working as well as he hoped. He wants so much for things to work.
Also at the beginning it was hard to get him to believe I really was as symptomatic as I was saying. Up until just before Christmas (about 1.5 months into this exacerbation) he would keep saying things like ""if you really are having symptoms that often..."" rather than simply acknowledging it.
I think sometimes one has to just keep driving home the point until it sinks in.
Hope your meeting goes well.
Thanks! I'll probably be ranting/asking for advice on how to approach it nearer the time (it's in March). I don't feel like I'm disappointing my consultant - more beating my head against a brick wall at times! He has many good points (he has rung me at home on two occasions to get things sorted out and does seem interested in me as a person and in getting things better). However, while I do agree with him that the breathing pattern issue complicates things and that he has to take it into account, I still find I am having more properly 'asthmatic' episodes than I'd like and I do not think this suggests 'good control'. My control is certainly better than it used to be and I can have pretty good periods for longer than before, but if I take one of those 'asthma control tests' I still don't have a brilliant score, even allowing for the fact that I see nothing wrong in reliever twice a day rather than twice a week as long as it keeps a lid on things and I can go about my life as normal. I just don't feel I'm quite there yet and I worry that he only sees the good bits (which I do appreciate, they have helped me) and isn't addressing the ones that aren't quite working yet.
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