Bewildered and unsure as usual

[Wheezycat]

A week ago tomorrow night I reduced my Symbicort to one puff am and one pm, to test if that works for me. This was after a review earlier that day, where I had been told I should ideally be on that dose, not two times two per day. If I needed that much I need something else. Montelukast has been suggested.

So nearly a week in I think I am actually doing OK, but I feel closer to problems than I usually do. I cough more, but generally not loads, feel a sense of irritation in my windpipe at least some of the time, but can walk reasonably briskly and that too feels OK. Perhaps just occasionally a tiny wheeze. I am doing PF daily. It is slightly lower than before, but only very slightly. I don’t take extra ventolin - except last Monday when I did feel troubled, but it must have been something else that caused that, as it cleared up.

My history is of not being aware, properly, when I develop problems, unless they really are significant. And not always then either. The only time I have been admitted was when I had been doing just that, not noticing for quite some time. I rarely resort to ventolin - the three times per week measure is subjective, and no use for me, as I am more likely to take a cough sweet, or a quick drink, just to soothe anything.

How long does it take before steroids clear in your system? I am still taking some, but if I need as much as I did have, it should follow that some inflammation is coming back.

I don’t know! I just feel bewildered. To me it feels like it is working, but I can’t help wondering if I am failing to notice. My husband can’t hear my breathing issues, but I have especially one friend who does, and nags me, but I only see her once in a while. She is at the other end of the country. Is it too soon to bring it to a professional? Or is there any need to go at all? Obviously this is for me to sort out, but any comments would be welcomed.

[EmmaF91 Community Ambassador]

Hi

By steroids do you mean tablet form (ie prednisolone)? If so then it’s not usually advises to ‘play with’ or reduce your symbicort until the course is ended, and you’re 3-6 months post flare.

If you’re just talking about the level steroid intake from the inhaler it can take a few days for your internal levels to adjust - think about how long it took for the inhaler to work, and reverse it 😉. The inflammation will only increase if you’re losing control, if the lower dose is right for your body then no inflammation will return... it’s a trial and error thing.

I’m assuming that you’ve had LFT to confirm asthma, as it’s very unusual for a drink or cough sweets to calm things down (even for CVA). Typically with any type of asthma little will help in true attacks other than salbutamol 🤨. If you have been officially diagnosed it could be you have a concurrent condition, such as VCD etc... it’s just something to think about if you haven’t been investigated properly. A lot of things can ‘mimic’ asthma, and be ‘fixed’ by the same preventative drugs 😅

I also struggle to spot symptoms/ admit when I’m bad. I won’t notice any symptoms until I’m below 50%, and won’t think I’m that bad til it’s at about 30 and I’m going through a pump a week 😅 (I know, I know - but in my defense im a severe asthmatic and lived at 50% for a year, which is when I lost the ability to notice symptoms).

If you’re lungs are feeling more ‘twitchy’ then I’d go back to the docs to talk about additional meds (such as montelukast) or changing preventer (not sure what dose you’re on, but there may be a higher dose of symbicort you can take if you don’t want to swap completely). If you’re on a lower dose, I’m not sure why they’d reduced you to 1x2 rather than 2x2, unless you’ve been stable for months and they’re trying to ‘step-down’ your meds (but if this is the case why suggest an add on if it doesn’t work 🤨).

Ideally I’d suggest keeping a record of your symptoms (when you cough, how long it lasts, how you deal with it etc etc), and objectively compare symptoms pre and post the lower dose, but I’m assuming you don’t have anything like this 😅. Personally I’d see how it goes a little longer, but keep a record of symptoms from now on. If they get worse/more often, or if you’re feel more twitchy then go to the GP. If your husband or friends start to mention you’re sounding bad (cough/wheeze/SoB etc) then you can also use that to signpost you to the GP.

I hope that helps 😅. Good luck with whatever you decide to do

[Wheezycat in reply to EmmaF91]

Yes, I do find the whole thing complicated. I was on prednisolone fairly early in October due to a cold, but just for a week. It was in that period I spoke to an Asthma U.K. nurse, who was shocked that I habitually take 4 doses of 200/6 Symbicort daily, and norm should be to be on 2 doses daily. Once the cold was past and I was back to normal I arranged a review, and she confirmed the same. We agreed I should trial it, and then make a go appointment if it did not seem to be working.

It has been pointed out to me a number of times that the airways start at the bottom of the lungs and end at the tip of your nose. So my right tonsil, especially, gets ‘irritable’, that is gets ticklish leading to me coughing when my airways get inflamed (my throat can get very irritated even by eating a very vinegary pickled beetroot - they are not for me). Certainly cough sweets do not help with a proper asthma episode, certainly not with my lungs, but they do feel soothing to have when everything feels raw and irritated, in addition to whatever inhaler and whatever other medication I have been put on for things to improve. My upper airways tend to feel irritated when things are not quite OK. That is just me. And I notice that more than what my lungs are up to. Last time a month ago I ended up with wheezing and crackling and oxygen level of 93.

The problems in my lungs are obviously more serious. But like you, I think I lived with it for some time, some years even and so it became normal. It is since the once when I was sent into hospital by my GP that they - and I - take me seriously. At that time I ended up on prednisolone for nearly three weeks, longest ever for me, as I responded rather slowly to them. They kept me in an extra day as well for my slower than expected response.

I don’t know what LFT stands for, but I certainly had tests when I raised my problems back in 2014. The problems had been with me for a while, and both our daughter, an asthmatic, and my doctor friend were well aware - and probably frustrated with me for not realising myself! I am rubbish at noticing! Thus my posting.

My PF is down by about 10% perhaps, so it is fractional. I do keep track of my pf at present, and you are right, I should also write down my symptoms, even if they don’t seem much to write home about. I am very, very used to coughing.

[EmmaF91 Community Ambassador in reply to Wheezycat]

It sounds like you’ve worked out a ‘preventative’ system which works for you... for me infections often start in my left sinus (🤷‍♀️) or my throat and bounce around til it settles on my chest, and I get PND when my asthma starting to get bothersome, however when I’m not ‘ill’ these can still fly under the radar 😅.

LFT just stands for lung function tests when I cba to type it all out 😝. It’s funny I don’t notice my symptoms but I do notice when my mums bad... maybe it’s just easier to spot if you’re not living through it 😅.

Good luck and I hope you start to feel better soon x

[Wheezycat in reply to EmmaF91]

Yeah, well, I had no problem noticing when my daughter got bad - or other children when we went camping with her club. In fact when I heard that harsh deep hollow cough (which I also get sometimes) I would turn my head so fast to identify the source, I nearly gave myself in crick in the neck.

As for me, I have certainly coughed more today, and even treated myself to a couple of puffs of salbutamol before seeing people I see regularly, to prevent my coughing dominating the proceedings. So now I am up to the three salbutamols in one week - and there may be one more before the day is over. It is getting irritating. Beyond cough lozenges alone.

[EmmaF91 Community Ambassador in reply to Wheezycat]

It does sound like you may need something more to get full control 😔. Time for you to play the medication lucky dip I think 😒😅

[Hidden]

Hi, I have tried just about every "brown inhaler" there is. I always had a cough and hoarse voice thus always threw them away. I am 67 next month and have been using Relvar Ellipta and Incruse Ellipta for the past few years. The outcome is no couugh or hoarseness anymore. I use the inhalers once a day and always follow it with a pint of cold water and a Vitamin C and Zinc effervescent tablet (Boots) Not only is the drink sugar free it is refreshing and was recommended to me by an Asthma Nurse at our local chest clinic. The Nurse said he had Asthma and I asked him what one thing he would do or does if he were me. I can honestly say I hardly get any colds these days. David

[Wheezycat in reply to Hidden]

Thanks, David. I am on Symbicort and it has worked well for me the last couple of years, but apparently I am going above the recommended dose regularly, so the trial I am doing is to see if I can bring it down without ill effects or not. I don’t often get colds, I am glad to say. Unfortunately I can truly not stand sweeteners. I wish that when manufacturers said they have reduced sugar had done only that, not added sweeteners as well. I feel cheated over that as it gives things such an awful flavour.

[andydandy in reply to Wheezycat]

Stevia is ALL natural and has NO after taste and you can cook with it.

[Wheezycat in reply to andydandy]

I have tried it ....... and it tasted nasty! In the end I threw it away. Maybe I should give it another go. I am aware it comes from the Stevia plant.

[Superzob]

There seems to be a lot of subjectivity in this and opinions vary. I have been told to boost my Symbicort to 2x twice a day if I get a cold or feel unusually breathless, so I guess there's no harm in doing so; I certainly want to avoid oral steroids if I can, and also the antibiotics in the rescue pack as they're likely to increase my chance of a viral infection.. I guess, like you, I'd rather be taking less rather than more medication, but I've also missed my underlying asthma for years; earlier treatment might have reduced my chances of getting fixed small airways obstruction, but who knows? If you're monitoring the situation carefully, then I imagine you'll spot anything amiss and increase your medication accordingly.

[Wheezycat in reply to Superzob]

You could indeed be right, and that sounds like me in various ways. Unfortunately though I do now monitor carefully as best as I can I am still rubbish at noticing. I do my best to ‘gird my loins’ against this, so I have two friends and our daughter who is likely to tell me what’s what, in addition to my own assessment.

[PMRPete]

"Stepping down asthma treatment guidelines (Adults)"

neneccg.nhs.uk/resources/up...

[Wheezycat in reply to PMRPete]

Thank you Pete. It didn’t tell me much I didn’t know, except to wait for three months after an exacerbation. I had a cold early in early October. The review nurse didn’t mention that either. Nor of going down perhaps 25% first. In fact in the past (when I have temporarily been on a higher dose due to an infection) I have been told just to drop 50% when I drop. I have normally been more cautious.