Asthma/COPD sufferers - advice please

[Shit Good Nose]

As some of you may know/remember, at the end of 2019 and into 2020 I had pneumonia (definitely wasn't covid as I had the test), which left me with long-term mild breathing difficulties which both a GP and the asthma nurse at my surgery guessed was asthma caused by scarring left on my lungs by the pneumonia.  After nearly a year of treatment including two rounds of prednisolone (which didn't do anything), a 2 month steroid spray course (which didn't do anything) and several ventolin inhalers, both the GP and asthma nurse are now saying they don't think it's asthma after all and are a bit stumped as to what it could be.  I had a chest x-ray and blood test back in March 2020 and, aside from the lung scarring showing up on the x-ray, both were clear.

As I say, the prednisolone and steroid spray did nothing whatsoever.  The ventolin inhalers are great, but I'm huffing them on average 2-3 times (single sprays) a day - I say "on average", it does seem to be affected by the weather, so when it's high pressure and settled I might only have one huff a day, when it's low pressure and damp I might do as many as 5.  Neither the GP nor asthma nurse are happy with that average (they both say 2-3 times a week would be "acceptable" for asthma) and the asthma nurse even went so far as saying it could be something a bit more sinister.

Unfortunately the GP I've been speaking to isn't around until next Wednesday.  I've spoken to another GP who isn't willing to give an opinion as she doesn't know the history of it beyond reading the notes, but naturally I'm now mega paranoid about what the hell is going on.  The only symptom is shortness of breath/tight chest, as if I'm led down and there's something quite weighty on my chest (like a large book or something).  I've got no other symptoms of anything - no persistent cough, no mucus build-up or heavy phlegm, I'm not coughing up blood, I'm not losing weight (sadly), I'm not constantly or regularly tired or fatigued, no chest or arm pains, no sleep apnoea, no irregular heart beat, nothing.  I AM carrying extra terry at the mo, but I'm otherwise fairly fit and healthy and, aside from a break over christmas, do regular exercise.  I've also been a LOT bigger in the past than I am now and had no problems.  I'm 42 in March, never had asthma or similar in the past, never smoked, no history of heart disease or anything in the family. 

I'm just wondering how regularly CaBbers who are long term asthma sufferers (and I know there are a few) huff on a ventolin, whether what I've described is in any way similar, and what sort of treatment has worked.

(lung cancer or asbestosis, obvs)

[Mr_Simnock]

The only symptom is shortness of breath/tight chest, as if I'm led down and there's something quite weighty on my chest (like a large book or something)

That is something I think could well be related to your heart, good to see your trying your best to get this sorted via the GP. Does this happen after any form of activity or just random as you like?

[Shit Good Nose]

That is something I think could well be related to your heart, good to see your trying your best to get this sorted via the GP. Does this happen after any form of activity or just random as you like?

I did wonder about it being heart related, but when I mentioned that to the GP I spoke to yesterday she said ventolin wouldn't ease it if it was that.

It's fairly random and activity doesn't seem to be a trigger.  It definitely seems to be governed more by the weather than anything.

[Mr_Simnock]

Ventolin is a bronchodialator, this just relaxes the muscels in your lungs and widening airways to aid breathing, if your breathing easier your getting more oxygen to your blood and that can help with some heart problems. Anyway, hope you get this sorted soon and get back to health whatever it is.

[SpiderChrist]

The game changers as far as controlling my asthma is concerned was being prescribed Montelukast tablets (one a day at bedtime) and using a Symbicort inhaler, which is a combined reliever and preventative (one puff, twice a day*).

It seems odd that you've only been given a ventolin inhaler, which is a reliever, and nothing to prevent the symptoms in the first place. I'm no doctor, but I've seen one on television.

*waits for inevitable "i bet you do you dirty old etc"

[Shit Good Nose]

Ventolin is a bronchodialator, this just relaxes the muscels in your lungs and widening airways to aid breathing, if your breathing easier your getting more oxygen to your blood and that can help with some heart problems. Anyway, hope you get this sorted soon and get back to health whatever it is.

Thanks.  Either that or dead soon, eh.

It seems odd that you've only been given a ventolin inhaler, which is a reliever, and nothing to prevent the symptoms in the first place. I'm no doctor, but I've seen one on television.

The prednisolone tabs and steroid spray were supposed to be the preventers.  But they didn't prevent.

[SpiderChrist]

The prednisolone tabs and steroid spray were supposed to be the preventers.  But they didn't prevent.

Oh yeah, missed that. Sorry.

[SpiderChrist]

This has just occurred to me - do you eat a lot of dairy products? Cutting dairy out of my diet improved both my asthma and eczema. I appreciate that there's no real evidence other than circumstantial, but maybe worth a go?

[Shit Good Nose]

Aside from milk in tea, cheese every now and again and ice cream VERY occasionally, no.  I didn't have any cheese or ice cream at all between last summer and christmas and didn't notice any difference in the problem, so I don't think it's got owt to do with dairy.

[SpiderChrist]

Ah, man. That fucking sucks. I hope they can get to the bottom of it.

[Dex Sawash]

All copd are bastards

[Nice Relaxing Poo]

using a Symbicort inhaler,

Symbicort was a game changer for me too. I notice right away if I don't use it which says something about its effectiveness.

[H-O-W-L]

Fostair did the job well for me. It sounds odd that no Roids have helped though. Prednisolone is usually the big bang fuckoff to asthma.

[Blue Jam]

Neither the GP nor asthma nurse are happy with that average (they both say 2-3 times a week would be "acceptable" for asthma) and the asthma nurse even went so far as saying it could be something a bit more sinister.

I was diagnosed with asthma in July. I had just started cycling to work and had an attack, and after talking with my GP and starting to use a Ventolin inhaler I realised I've probably had exercise-induced asthma all my life, and when I was at school this was mistaken for me being unfit and lazy and crap at PE. My GP said this is the case for a lot of people diagnosed as adults, which reinforces my opinion that all PE teachers are sadistic bastards.

...anyway, I was also told 2-3 times per week was acceptable, but anything more than that wasn't sinister, just a sign that I needed preventer medication as well as a reliever inhaler, probably steroids. It looks like that's the difference between "moderate" and "severe" asthma.

A friend of mine had pneumonia a couple of years back and now has severe asthma. He has also been on steroids and hardcore antibiotics ever since (no booze for two years, poor guy). He has regular checkups but there's definitely no cancer, it's just the infection being a bastard to clear.

Using your reliever inhaler in the cold weather isn't that surprising either- cold, damp air can be a trigger. It's one of my triggers too, or at least it is when I'm exercising- huffing cold air when I'm cycling is bad enough, but recently I had to use my inhaler which on a walk up a steep hill, and I think it must have been because of the freezing temperatures that day.

Maybe get a second opinion? And some steroid-based preventer medication? And keep away from maskless bastards obviously. Also if you can get a GP to diagnose you with more severe asthma you could jump the Covid vaccine queue, so that's one positive I guess.

Stay safe x

[Shit Good Nose]

Fostair did the job well for me. It sounds odd that no Roids have helped though. Prednisolone is usually the big bang fuckoff to asthma.

A mate of mine is on Fostair and has given it the thumbs up, but the big difference there is he's had asthma since childhood.  I've developed this...whatever it is at the age of 40/41.

But yeah, I suspect the asthma nurse said it might be something more sinister precisely because the prednisolone and steroid spray didn't touch it.  But I've been doing some self-diagnosing on google today (yeah, I know) but EVERYTHING keeps coming back to asthma.  The only other thing that gets anywhere near close is liver cancer or some form of liver disease, but I don't have any of the main symptoms associated with those.  Even heart problems aren't ticking any other boxes.

I was diagnosed with asthma in July. I had just started cycling to work and had an attack, and after talking with my GP and starting to use a Ventolin inhaler I realised I've probably had exercise-induced asthma all my life, and when I was at school this was mistaken for me being unfit and lazy and crap at PE. My GP said this is the case for a lot of people diagnosed as adults, which reinforces my opinion that all PE teachers are sadistic bastards.

...anyway, I was also told 2-3 times per week was acceptable, but anything more than that wasn't sinister, just a sign that I needed preventer medication as well as a reliever inhaler, probably steroids. It looks like that's the difference between "moderate" and "severe" asthma.

A friend of mine had pneumonia a couple of years back and now has severe asthma. He has also been on steroids and hardcore antibiotics ever since (no booze for two years, poor guy). He has regular checkups but there's definitely no cancer, it's just the infection being a bastard to clear.

Maybe get a second opinion? And some steroid-based preventer medication? And keep away from maskless bastards obviously. Also if you can get a GP to diagnose you with more severe asthma you could jump the Covid vaccine queue, so that's one positive I guess.

Stay safe x

Thanks for that - that's actually bizarrely encouraging, as in at this stage I'd be more than happy if it does turn out to be asthma+ (I can't say it's severe as my shortness of breath is just that - I'm not clambering around like I'm drowning or anything).

[Blue Jam]

Do you not have actual attacks then? Is it more like milder but constant shortness of breath? In any case you've had pneumonia and have scar tissue as a result, no wonder you're struggling.

Yep- see a different doctor!

[Shit Good Nose]

I wouldn't describe anything I've had from this over the last year as an attack, no.  It's more like a creeping restriction that I can feel coming on over quite a length of time and if I don't do anything about it (i.e. huff on an inhaler) it's just very uncomfortable.  I daresay under normal circumstances it would still be a call to the paramedics, but I'm not laid out clutching my chest, I'm just sat upright on the edge of the sofa not being able to fill my lungs up as much or as quickly as normal.  I would definitely describe the symptoms as mild, even if whatever is causing them turns out to be a bit more major.

[Glebe]

My asthma has improved over the years (I was hospitalised as a kid once when I could barley breathe), but I still use a Ventolin inhaler. If I'm only feeling a bit wheezy I'll just take it as needed.

[H-O-W-L]

I'm pretty sure I had COVID in March and that's why I now have asthma that requires daily maintenance, to be honest.

[confettiinmyhair]

A bit left field, but what's your house like during the winter? Some places I've lived in the past have caused havoc to my lungs because of the cold air and moisture.

[Janie Jones]

I wouldn't describe anything I've had from this over the last year as an attack, no.  It's more like a creeping restriction that I can feel coming on over quite a length of time and if I don't do anything about it (i.e. huff on an inhaler) it's just very uncomfortable.  I daresay under normal circumstances it would still be a call to the paramedics, but I'm not laid out clutching my chest, I'm just sat upright on the edge of the sofa not being able to fill my lungs up as much or as quickly as normal.  I would definitely describe the symptoms as mild, even if whatever is causing them turns out to be a bit more major.

Have you ruled out a breathing pattern disorder? Usually caused by hidden anxiety, even if you don't consider yourself an anxious person and even if you're in a relaxing environment. It's sometimes called 'hidden hyperventilation' or even a silent panic attack. You get a strong unpleasant feeling of being unable to take a good deep breath because you've unconsciously been breathing too fast and too shallow. It's usual cured by a regime of breathing exercises.

[Shit Good Nose]

A bit left field, but what's your house like during the winter? Some places I've lived in the past have caused havoc to my lungs because of the cold air and moisture.

It's a Victorian solid stone end terrace, so naturally damp and mouldy.  I don't think it's the cause as we've been here for 17 years, and it only came on after the pneumonia with no similar issues in the past, however I'm sure it's not helping.  We were looking to move last year (not because of this, we just need a bit of a bigger house now little Nose is older and I want something newer cos the problems associated with period buildings are doing my fucking nut in), but then mrs Nose's job went and the lending regs and criteria changed and we couldn't even borrow enough for a sideways move.

Have you ruled out a breathing pattern disorder? Usually caused by hidden anxiety, even if you don't consider yourself an anxious person and even if you're in a relaxing environment. It's sometimes called 'hidden hyperventilation' or even a silent panic attack. You get a strong unpleasant feeling of being unable to take a good deep breath because you've unconsciously been breathing too fast and too shallow. It's usual cured by a regime of breathing exercises.

It's funny you say that as I spoke to my sister last night and she said EXACTLY the same.  We are having a bit of a stressful time with our mum for various reasons at the moment and have been since last October, but that wouldn't account for the period between the end of the pneumonia through to October, when I was still "suffering".  I wouldn't say my job is particularly stressful, but, despite everything else going on in the world, 2020 was the busiest I've ever been in the nearly 20 years I've been doing it.  My sister encouraged me to mention it to the doc when he makes contact next week.  I hadn't mentioned it up to now as it didn't even cross my mind as a possibility, but I will do this time.

[Blue Jam]

I'm guessing you've already got a dehumidifier? We've got one in our bathroom- the flat isn't damp but the bathroom doesn't have a window and the fan in there is inadequate so there is a mould problem. The dehumidifier has made a huge difference, trying to keep on top of the mould problem is no longer a frustrating endeavour and I'm no longer having to spend a small fortune on toxic mould killer spray.

It's also amazing to see just how much water a tiny dehumidifier manages to pull from the air, and shocking to realise how many litres of water your ceiling and walls must have been absorbing. Ours only cost about £40 and it's not been that expensive to run.

If damp air is a trigger for you I'd recommend getting one. I imagine the mould spores aren't helping either, a dehumidifier would help with that too.

[Shit Good Nose]

I'm guessing you've already got a dehumidifier? We've got one in our bathroom- the flat isn't damp but the bathroom doesn't have a window and the fan in there is inadequate so there is a mould problem. The dehumidifier has made a huge difference, trying to keep on top of the mould problem is no longer a frustrating endeavour and I'm no longer having to spend a small fortune on toxic mould killer spray.

It's also amazing to see just how much water a tiny dehumidifier manages to pull from the air, and shocking to realise how many litres of water your ceiling and walls must have been absorbing. Ours only cost about £40 and it's not been that expensive to run.

If damp air is a trigger for you I'd recommend getting one. I imagine the mould spores aren't helping either, a dehumidifier would help with that too.

Oh, we have LOADS of the moisture capturing bags and boxes (the ones with the little pellets in) dotted around the house and they fill up and get replaced on a regular basis.  We did try a couple of plug-in electric dehumidifiers, but they were making it too dry - I suffer from migraines (unrelated - have done since I was very young) and using the electric ones was massively ramping up how frequently I was getting migraines (and we're talking PROPER lie-down-in-a-dark-room-with-a-pillow-on-your-head-covering-your-eyes-and-sleeping-it-off migraines, not putting your hand to your head saying "oh, I've got SUCH a migraine" whilst carrying on with your normal business), so we switched to the "manual" ones on the assumption that they weren't quite as effective.  But yeah, they still fill up in no time.


Interestingly I saw something on BBC news earlier that said a small minority of those who caught covid in Wuhan were still suffering from long-covid symptoms six months after they were clear of the virus, so I'm beginning to wonder if maybe I DID have covid but was tested too long after it went for it to have registered.  Think I might mention that to the doc next week as well, and it may explain why the prednisolone and steroid spray did fuck all.

[Blue Jam]

We tried the "manual" dehumidifiers too but they would fill up in no time. Still use them for the wardrobe, but we needed something stronger for the bathroom. Also I didn't like getting through so much unrecyclable plastic, though I suppose using more electricity isn't really better.

Any chance you could get a Covid antibody test on the NHS, or are they only available privately? Are they still hard to obtain? I did consider having one to see if I might have had asymptomatic Covid and become immune, but if it really is possible to catch it twice then there would be no point. There would be some point to it for you though.

[Shit Good Nose]

Any chance you could get a Covid antibody test on the NHS, or are they only available privately? Are they still hard to obtain? I did consider having one to see if I might have had asymptomatic Covid and become immune, but if it really is possible to catch it twice then there would be no point. There would be some point to it for you though.

I don't know about the test, but you can DEFINITELY get covid twice - my mum's had it twice.  Fortunately the symptoms were very minor both times (just the high temp only the first time, and high temp and occasional mild dizzy spells the second time).

[Rev+]

The ventolin inhalers are great, but I'm huffing them on average 2-3 times (single sprays) a day - I say "on average", it does seem to be affected by the weather, so when it's high pressure and settled I might only have one huff a day, when it's low pressure and damp I might do as many as 5.  Neither the GP nor asthma nurse are happy with that average (they both say 2-3 times a week would be "acceptable" for asthma) and the asthma nurse even went so far as saying it could be something a bit more sinister.

They're talking shit.  A double spray on the ventolin 3 times a day is normal for me, and I have very mild asthma.  I don't use it for large portions of the year but it's the change in the weather that increases the tightness, and it sounds like it's the same for you.  I've been at this for nearly 40 years and it's not done me in yet.  2-3 times a week is just silly, it's not what the stuff's designed for.

[Shit Good Nose]

They're talking shit.  A double spray on the ventolin 3 times a day is normal for me, and I have very mild asthma.  I don't use it for large portions of the year but it's the change in the weather that increases the tightness, and it sounds like it's the same for you.  I've been at this for nearly 40 years and it's not done me in yet.  2-3 times a week is just silly, it's not what the stuff's designed for.

Thanks, that's really encouraging, especially today as I've been struggling with a tight chest all day and several hits on the inhaler has done little more than ease it very slightly, whereas before it was really opening everything up.  I've been in bed wide awake for the last three hours wondering if I've also got a dull ache in my left arm and what I've actually got is something like angina or asbestosis, but I'm sure it's psychosomatic and I'm just being paranoid and overthinking my breathing.

In any case, I might phone the surgery when they open today and see if another doc can see or speak to me, if only just to put my mind at ease until the other doc is back and gets in touch.

[Shit Good Nose]

Had a follow-up call from the doc I spoke to last week.  She'd spoken to the doc who had been dealing with me previously, and the asthma nurse as well.  They had a look at the chest x-ray I had last year and talked it through and apparently all three agree that it's probably NOT asthma, at the moment based solely on the fact that neither the steroid tabs or spray touched it.  So I've got to have another blood test next Monday, I'm being referred for another chest x-ray (who knows when I'll get the appointment through for that), and also to a respiratory specialist which will probs require me to have a CT scan (again, chuff knows when that will be).  In the meantime, and regardless of the fact they don't think it's asthma, they're trying me on the abovementioned Fostair from tomorrow.

I did ask her what they thought it could be if not asthma, but she wouldn't be drawn to even offering a guess.  I hope that means they don't really know, rather than they suspect something very serious.

So now I'm playing the waiting game again to find out if I'm going to wake up dead soon or not, the worry of which I'm sure will exacerbate it for me because I am a worrier when it comes to my health (although I'm NOT a hypochondriac). 

[Shit Good Nose]

Update FWIW


Blood test done as scheduled and the chest x-ray came through surprisingly fast a couple of days later.  Both came back "okay", which is to say that there are a few markers in the blood but only because of whatever it is I've got, and the lung scarring is still visible in the x-ray.  But, the good news, there's no further action required with those.  On the other hand, though, it still doesn't answer what it is I've actually got, so I'm assuming a CT scan and respiratory specialist are up next.

The other big news is I was put on Fostair just over two weeks ago and it's been brilliant - whilst the salbutamol did what it's supposed to do, as I said I could feel my chest tightening and breathing getting a bit more laboured slowly but surely.  With the Fostair however I've not had that same feeling at all (from day 1 of starting it actually), nor have I needed to use it as a reliever except a single extra shot twice since I started, otherwise I've been absolutely fine with it all day and all night with the prescribed four shots a day - two in the morning and two at night.  From reading the paperwork that came with it, there are several warnings repeated that it is not suitable to treat, or for people with, heart problems, so the fact they prescribed it AND I'm not suffering any side effects or negative reactions at all precludes the possibility of this being heart related I guess?

Anyway, all good so far, but the actual cause remains a mystery for now.