How to tactfully put across "no wheeze can still = asthma"

[-Butterfly-]

I'm seeing the asthma nurse tonorrow after seeing the GP the other week for an asthma exacerbation. She decided that due to the fact I wasn't wheezing and my sats were 100%, I didn't need oral steroids and that increasing my preventer would be enough. Despite this increase, my symptoms are still the same if not worse, I'm now waking during the night with chest tightness and struggling to get much air in or out. I'm short of breath and my peak flow is around 65% of best. I'm using ventolin 3- 4 times a day, but think that actually I'm probably underusing it, however, it does work when I use it, and mostly lasts at least 4 hours.

I want to tactfully get the point to the asthma nurse, that just because I'm not wheezing, doesn't mean I'm ok, nor does lack of physical symptoms at that point, not mean that I wasn't struggling a few hours ago or won't be in the middle of the night. (Yes, I know, she should know this!)

I also want to set up an action plan so I can get on top of it sooner, rather than it bubble of for so long like this has.

Any advice? I'm not very good at being forceful especially when I'm not feeling 100%

[Lysistrata Administrator Community Ambassador]

Sorry, not much use but just to say i am just the same! I don't really know how to respond when faced with people who are dismissive and talking what I know is utter rubbish about asthma- and I hsve met a lot of them, including respiratory consultants who claim to specialise in asthma!

I have had this often enough that I tend to just not bother and withdraw because it feels hopeless. I know I should try to address what they say as it can work if done right, but like you I am not good at this especially when not feeling good! There is an asthma psychologist at the specialist clinic I go to who seems to get the problem and says she will try to help me get over this - will pass on any tips. The usual writing down advice doesn't help me as it's not about remembering but about getting my point across to someone who isn't listening. Hoping others have tips.

Sorry this is no help but good luck! If asthma nurse no help is there a good GP you can try?

[-Butterfly- in reply to Lysistrata]

Sorry to hear you're in the same predicament 🙁 yes any tips you get from the psychologist would be awesome thank you! Scary to think that even a Consultant was clueless!!

To be fair, I'm pre-empting the response from the asthma nurse as she's new and i haven't seen her before, but the last one was terrible. It seems the GPs are too, but we've just merged with another couple of practises and the GPs have all changed, so over time I do aim on working my way through them in the hope there's a good one amongst them! 😂 We did have a really good doctor, who noticed more subtle things like clipping sentences and increased resp rate, but he left 🤨

[Lysistrata Administrator Community Ambassador in reply to -Butterfly-]

'A' consultant like that would sadly be an improvement- I've encountered several and it is scary - I find it hard to trust any doctor now really even though I know rationally not all are like that and have met some good ones.

Typical that the good GP left same at mine but on plus side so did one of the awful ones (ok until she listened to the previously mentioned cons, then decided I was making it all up!) Hope the new asthma nurse is better and you find some good GPs. And feel better!

[-Butterfly- in reply to Lysistrata]

Oh wow, really more than one terrible one?! I completely understand your lack of trust!

Thank you, fingers crossed!

[strongmouse]

I do find it useful to write all my symptoms down and when they occur, partly because I can side tracked and forget, but also to make sure that I have got all my points across. If I feel that I am not be listened to then I say at the end of the appointment, "Excuse me I just need to make sure that we have covered everything I'd needed to talk about." I then read the list, sometimes out loud, and if I need to ask questions or mention something I don't feel happy about. For instance I might repeat what the nurse has said, "I've been taken off the steroids I was on and now my symptoms such as xyz are a lot worse. I don't understand why?"

It puts the onus on the nurse or doctor to explain exactly why they have made a decision. Then I can say, "I disagree with why you aren't giving me anything to control those symptoms. Can you explain the reason and what I need to do to manage them?"

There is information on-line about being assertive - I had to learn how to when doctors weren't taking me seriously. Be informed about your symptoms, and what you might need. Ask questions if you are not happy about their decision. If they don't answer you or you feel fobbed off then repeat your question. Summarising what you think they have said can help and then asking your question. Hope you find the nurse helpful. You are an equal partner in your health care and you are consulting them for medical help and advice.

[-Butterfly- in reply to strongmouse]

I love this, thank you! I guess I've never considered turning it around and asking why they've reached their decision, certainly food for thought and will try to put it into practise tomorrow 🤔

[Lysistrata Administrator Community Ambassador in reply to strongmouse]

I know this isn't my post but I also love this and will have to try it too, thanks!

Don't know if this is just me but I have almost internalised all those people who told me I was a hypochondriac and nothing was wrong, so your post also reminded me that I'm not being unreasonable in this situation expecting better treatment, and that something is going on that they need to address.

[risabel59]

One thing that I’ve discovered is that the two most imminent consultants that I have seen over the last 15 years say they can always hear my wheeze, even when I say I’m not wheezy, but often g/p’s / Asthma nurses say I have no wheeze. Apparently it’s very high pitched. When I feel well I can’t hear it, but apparently I still wheeze.

So if you have all those other symptoms you need to get on top of things. Also it might be worth calling the Asthma UK help line for help with what to say to your asthma nurse/ GP

R x

[-Butterfly- in reply to risabel59]

Thank you for your reply.

I do wonder how hard they listen too, most gps listen at 4 different places, one even did it through clothing. The good gp did loads more, and for longer.

[Lysistrata Administrator Community Ambassador in reply to risabel59]

That's very interesting - now wondering if I sometimes have one too that not everyone picks up! My usual trick is to start going quiet, which not all doctors can detect (one who was pretty terrible in many respects kept adjusting her stethoscope and tapping it s though it were broken, before telling me I was fine).

I have been told a couple of times that I have a residual wheeze after treatment in hospital, and once that they felt this was definite improvement over the previous lack of sound!

[Birthday60]

Interesting - I have never been a loud wheezer but I keep a diary and graph (easy on a spreadsheet or squared paper) of my twice daily Peak Flow. I identified a problem with German wine, oranges and sadly (!) Chinese food consumption that way. To be absolutely fair many people are having difficulty breathing at present with the humidity and temperatures. Asthma can also be stress related so worrying and fretting about the response from your nurse may make it worse. Step 1 take data with you to show you are in control, informed and prepared to follow a plan. Step 2 more drugs is Not the answer - you need to take steps to keep calm and be on top of your asthma and not let it rule. Step 3 Take up a cardio exercise like Nordic Walking or a relaxing class like Pilates.

Let me keno how you get on - the above worked for me

[-Butterfly- in reply to Birthday60]

Thank you for taking the time to reply. Shame about the German wine and Chinese food!

I wasn't necessarily stressed or worried about the appointment, more wanting tips on how to be assertive without being rude, as it's not something I'm good at.

I showed the nurse my symptoms/peak flow diary, which was useful to have an objective record of my situation.

In terms of cardio, when well, I play roller derby for at least 4 hours a week (lungs permitting) and hope to be well enough to complete a skate marathon. Whilst I struggle with my asthma and exercise, I try to do as much as I can.

[lejaya]

hi butterfly

I had the same problem very recently in hospital and it wasn't until doc heard a very small wheeze that I got treatment as before that the paramedics said my chest was clear so didn't give me any meds.

I've had it at my gp loads of times to and I have actually said on occasion there are 4 main symptoms of asthma and wheeze is not my main symptom.

I now have a rescue pack of pred and antibiotics to keep at home, which I have found very helpful

could you maybe ask your gp for one

lejaya

[-Butterfly- in reply to lejaya]

I'm sorry to hear you have the same struggles although a good result with the rescue pack, if only my GPs could be so forward thinking!

[lejaya in reply to -Butterfly-]

my rescue pack was prescribed by my cons and my gp put it on my repeat prescription. are you under a specialist?

[-Butterfly- in reply to lejaya]

Ah I see, no I'm not 🙁

[lejaya in reply to -Butterfly-]

sorry forgot to mention the cons part but your gp should still be able to give you a rescue pack 😊

[-Butterfly-]

The nurse agrees with the GP that this isn't an acute asthma event, more that my asthma isn't controlled ... not really sure how the two are different things.

She's swapped my sirdupla to Flutiform and i go back in a month for a review. 'Hopefully' it'll calm it down were her words. If it gets worse come back sooner.

Explained that I'm taking ventolin 3-4 times a day (sometimes multiple doses) bit that actually I probably need to use it more as I try to last without it if my symptoms are only mild. She just said take it when you need it. So my useage it going to go up lots!

[Lysistrata Administrator Community Ambassador in reply to -Butterfly-]

That's very much not controlled but I see what they mean. It sounds like my day to day a lot of the time which is annoying but not acute. I personally find it more annoying and frustrating than hospital level attacks, even though those take some recovery.

This does sound like pretty high levels of not controlled though - I have had grumbling attacks before that were treated by good doctors in a similar way to more sudden acute attacks. I am not that responsive to pred but I know those who are find a burst of it helpful for this sort of situation. My case is unusual as I cannot add anything more, but for less freaky people I would think there are some options even if it is not acute - to stop it getting more acute too!

I have heard good things about Flutiform so hope that helps. Are you on any extra things? May be some benefit to asking about add ons like Spiriva if you still struggle on Flutiform. Sometimes it is a case of trying to find the right drugs and then it comes together.

Wonder if worth giving the AUK nurses a call and seeing what they think?

[-Butterfly- in reply to Lysistrata]

Thank you for your reply.

Yes I guess my worry is that I'd sooner kick it's butt now before it potentially gets worse. What might not be acute now, may turn into being acute. Surely uncontrolled symptoms are a warning?! I get that my preventer has been increased, but this hasn't helped, and now my preventer changed, but if sirdupla worked before but isn't now, I'm not sure what changing it will do, and I'm assuming the flutiform is no stronger in terms of steroid or LABA?

I'm not being defeatist here, I'm obviously willing to try everything with the hope of it working, but I still have the worry at the back of my mind. I also know that oral steroid have really helped in the past.

I can't pick up my prescription until Monday, so I'll see how it goes. I guess at my next appointment, adding other things in might be something we can discuss should i still need more support.

[Lysistrata Administrator Community Ambassador in reply to -Butterfly-]

Yes I ws thinking that while changing the inhaler may help, something more immediate may alo be needed to get things under control. I don't know how Flutiform and Sirdupla compare - may depend on strength, but I think not major difference. My consultant prefers formoterol to salmeterol though didn't say why.

I do think they are maybe not paying enough attention to the current significant level of uncontrolled symptoms. May be worth calling AUK nurses and/or looking up information if this continues, and going back to say look I will try the new inhaler but you need to address this now.

I also think there is a bit of a complacency/reluctance to do much about significant asthma symptoms in the UK which may explain our poor showing in outcomes. No, oral steroids aren't ideal but neither is asthma attack and sometimes more aggressive treatment is needed to address things!