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So..... you have asthma!

twinkly29 profile image
8 Replies

I hope most of this is not new to most people (and so apologies for probably boring you senseless 😅). But there seem to be quite a number of people new to asthma (hi and welcome to HU!) who haven't been told the basics and for whom proper monitoring and care is not happening. Also I know of people who aren't new to it but don't have good or even acceptable support so don't realise what should be happening. Apologies also if this long 😬 and I should add here that asthma is very individual (far more so than many health professionals acknowledge) but I'm thinking of the basics here - some people will be in a different place because of their situation and I suspect others are too but wouldn't be if the basics were being covered in Primary Care in the first place.

I don't think any of this is due to Covid - I know a lot of people feel face to face appointments would miraculously improve things but they are not necessarily "better". I am very lucky in that my GPs/whole GP practices have always been fantastic but far too many GPs and nurses don't give correct advice (if only the Asthma UK nurses could clone themselves….) Good, knowledgeable health professionals who truly understand the complexities of asthma will be just that whether over the phone or in person.

*Face to face vs phone appointments:

One thing that they can of course do face to face is listen to chests. However, this is only helpful in some situations. Many asthmatics do not wheeze and so listening to the chest of someone who doesn't wouldn't particularly help anyway.

Over the phone the rest can all happen

- discussion of symptoms;

- how things have changed recently (e.g. symptoms, peak flow and the use of reliever medication, all relevant if the call is due to things not being as controlled);

- peak flow scores (again including in relation to personal bests and recent scores);

- response to reliever medication (e.g. how symptoms and peak flow change (or not) following reliever medication);

- response to new preventer medication (again changes to symptoms and peak flow over time if a new medication is being reviewed).

Also if you’re not acutely symptomatic when you see them, face to face may also lead to being ignored as you’re fine when they see you, even if you report that the issue is at night…

Breathing tests (spirometry or lung function tests (LFT)) would also need to be done in-person but are not routinely happening at the moment. However, while such tests are used as part of diagnosis, this can be a long-term thing and can take several attempts anyway. A one-off spirometry might well be entirely normal but that alone shouldn't be used to rule out asthma - asthma is variable and so, on a good day, things would look ok.

At the moment, other factors can be used for diagnosis (or at least a likely "running diagnosis") - namely symptoms and peak flow, and how both of these change (or not) in response to asthma medications. This ‘trial by fire’ approach is a very common method with asthma, even pre-covid. Spiro/LFT is just something that needs to happen at some point to make the diagnosis official but a lot of surgeries aren’t set up to do spiro so can require hosp appts that take time.

What should asthmatics be aware of/what should be happening?

*Peak Flow:

This should be done

1. Regularly, twice a day, best of 3 attempts, either always pre or always post meds. Pre is typically preferred. But they should be done at the same time if day, and if post, the same time after drugs.

Over time, peak flow monitoring

helps to find and then gauge against YOUR best score (predicted or expected values are largely irrelevant);

helps to see if a new medication is improving things;

helps to spot patterns or dips/issues occuring.

2. At times of symptoms (not every time, but for instance if things are noticeably less good generally, it can be useful).

Doing your PF before using your reliever inhaler and then 15 mins afterwards shows if relief meds are helping the symptoms. (A relief inhaler will not work instantly in asthma so make sure to leave the 15 mins.)

If PF and symptoms are improved but are not lasting, seek advice/help.

If they're not improving and you're struggling, seek advice/help.

If they're improving and lasting but it's happening more frequently than previously, contact your GP.

This post explains peak flow in much more (brilliant!) detail:

healthunlocked.com/asthmauk...

*Symptoms:

Know your usual symptoms. These may be pretty standard for you, they may vary according to triggers and they may change over time. But knowing what's what generally for you will help you notice and monitor early signs of things not being so great.

Many people (and way too many doctors) still think asthma is wheeze. In some people it is a symptom but in so many it isn't. Wheeze, shortness of breath, chest tightness and coughing are all symptoms of asthma - that's not to say of course that any wheeze, shortness of breath, tightness or cough are asthma related as very often they're not.

If symptoms are related to asthma they will generally respond to asthma medications - so acute symptoms and peak flow will generally improve with relief medications and chronic symptoms and the twice a day peak flow scores should improve over time with the right preventer medications. If things are not improved in either (or both) of these ways, it's quite possible that asthma is not the issue - either at all or at the current time. There are all sorts of issues that look and feel like asthma but are not asthma and so don't respond to asthma meds. They can exist alone or alongside asthma, just to be extra helpful. This post looks at some of these and is really good at trying to unpick the differences:

healthunlocked.com/asthmauk...

Other symptoms associated with asthma can include

- fatigue

- increased mucus (yellow/green can mean infection but can also be just a sign of inflammation. A common misconception is that green=antibiotics but this is not necessarily the case - green doesn't automatically mean a bacterial infection. Basically, just because it’s not white/clear, doesn’t mean it’s infection.)

- night-time waking/difficulty sleeping (asthma is commonly worse at night - some people even find it's the only time they experience symptoms. However, whether this is the case for you or you have symptoms at other times including at night, this is a sign things are less controlled than they should be and seeking advice is important.) The Asthma UK sleep page is useful here: asthma.org.uk/advice/living...

and also this post regarding night time issues: healthunlocked.com/asthmauk...

*Variability:

Not commonly discussed but asthma is variable. Variable in the way it presents (including actual symptoms, when they occur), variable in response to medications and variable in terms of good/bad days. It is definitely not the box-tickable set pattern of symptoms and treatments that is portrayed or seemingly expected by many!

*Medication:

1. Take it regularly as prescribed - don't stop it because you feel better and don't change doses etc without consulting your GP or asthma nurse.

2. Regular medication usually involves at least a preventer inhaler and a reliever inhaler (usually blue). This post goes into this in detail:

healthunlocked.com/asthmauk...

3. Side effects are very common with inhalers and other medications but these usually lessen over time - and don't forget that just because one normally reads about negative or more severe effects doesn't mean they're going to happen or are even more common.

4. Time should be allowed for new medications to kick in and become fully effective, and for any side effects to diminish/disappear. Things can feel less settled during this time and always discuss with GP or AN (or AUK) for advice or reassurance - but lots of chopping and changing meds without giving them the time to work isn't helpful. It means things are just rocked further by more changes and doesn't mean meds don't work - they often aren't given the time to do so.

5. Trial and error is very often involved in finding the right medication or combination of meds - this can be frustrating but it's very normal and is part of asthma being such a personal thing. Some people will be very emphatic about a certain inhaler, for example, and while that's great for them, it doesn't mean it's the right one for everyone.

*Triggers:

This page lists some common asthma triggers: asthma.org.uk/advice/triggers/

As with everything else related to asthma, they will be personal to you, will take you by surprise and will probably change over time! What affects you others may be ok with but, perhaps more importantly, things you are ok with might be a big problem for someone else. Often this can't be helped but is worth remembering when recommending "things that help asthma" or indeed reading other people's recommendations - something that helps one person might be a trigger for another so, while one can't and shouldn't live in a bubble, recommending and reading with caution is sensible!

Trigger Jenga is also a thing …. as explained here: healthunlocked.com/asthmauk...

*Control - the thing every asthmatic aspires to have!

Asthma can be daunting initially because one doesn't know what to expect or is on the road to stability. This is very often exacerbated by information and advice being utterly rubbish. Being daunted can lead to anxiety (even subconsciously) which, as mentioned earlier, can then be confused with asthma and, in some people, make the asthma worse. However most asthmatics, whether mild, moderate or severe, can be well controlled and live completely normal lives. There will be times where this changes but a blip can be a blip, it doesn't mean it's forever. As with initial stabilising, finding the right meds can take a bit of trial and error, but it is possible.

What is control?

Control is usually not needing to take relief medication more than 3 times a week. The preventer medication provides this control which is why it shouldn't be stopped because you feel ok - you feel ok because it's doing its job!

However, just because the ideal is not taking your relief medication more than 3 times a week, that doesn't mean you shouldn't take it! If you need it, you need it - you just need to be reviewed by your GP or nurse if an increase in need has become a regular thing. To go back to the beginning of this, this is likely to be over the phone at the moment but a discussion regarding symptoms, peak flows and response to meds should be just as productive - many people are finding it's actually better.

Short term flare-ups are often dealt with short courses of oral steroids (prednisolone) which are needed to dampen the underlying inflammation. Often GPs prescribe antibiotics as well although fortunately this seems to be becoming less common. Fair enough if someone has a definite bacterial infection, but if they don't then they don't help.

Longer term flare-ups can require a change in preventer medication - which requires the time for them to properly kick in. Persevering with this can mean control is reached once again (needing extra relief medication can be normal during this time). Ideally new medication trials should be done once an acute flare has been tackled - doing it at the same time means often new meds are thought not to be working. However, it's impossible to assess if things are uncontrolled anyway, as well as things being uncontrolled due to the kicking-in time. So a bit of a nightmare to unpick. But, done properly, with sensible expectations and reviews, control can be achieved!

*Action Plans:

Every asthmatic should have one. It should be drawn up with you, based on YOUR symptoms, medications and best peak flows (which may change over time and hence so should your action plan).

AUK's action plan page: asthma.org.uk/advice/manage...

Emma's post explaining action plans:

healthunlocked.com/asthmauk...

*Seeking help:

If generally something is a concern (you have a query, you're not sure if something is ok or not, if something is normal or to be expected….. contact your GP or AN or call the AUK nurses (sorry guys if you get inundated 😬😅 but so many people on here get more support from you wonderful people than they do elsewhere!) who are reachable on 0300 2225800, Monday to Friday, 9am-5pm. Alternatively their WhatsApp is 07378 606728. (NB: they reopen on Monday 4th January 2021 after their Christmas break). No question (for AUK, your GP/nurse or on here) is silly - even those of us more experienced don't know everything - I certainly don't!

If things (such as peak flow, symptoms, triggers) have changed, you've used your relief medication and it's helping, it can be a good idea to contact your GP anyway to have things reviewed. It's certainly recommended if relief meds are working but you're having to use them more often.

If relief meds are not lasting (they should usually last 4 hours), then seek help (GP or 111).

If relief meds are not helping or you're getting worse, seek help (GP, 111, A&E or 999 depending on the situation).

If others are concerned on your behalf, seek help! Often we can become ostriches because we hope it will go away, we don't want to bother people, we're worried about covid, etc etc. It won't, we're not and any risk of covid is balanced by the potentially fatal (sorry to be dramatic) risk of ignoring asthma deterioration. Even mild asthmatics are at risk. So if someone else is concerned about you, listen to them!

Covid and seeking help: many people are understandably concerned about covid if they need to go to A&E. Covid is not a reason to ignore asthma issues. As mentioned above it's potentially dangerous but, even at lower levels than that, delaying help is likely to mean things are worse for longer and it's more difficult to regain control. Hospitals might be very busy but they still want to see people who genuinely need to be there (asthma is part of this…. it's not on a par with a fractured eyelash or somewhere to go on a wet day!) They are well used to dealing with covid/non-covid patients by now so will be doing everything they can to keep risks to a minimum. Often asthmatics will be classed as potential covid due to coughing and shortness of breath but it's not a brush we're tarred with and that's that. To be honest, now that covid symptoms are so varied, they probably see everyone as maybe/maybe not!

Oops that was even longer than I expected. It's now 2022 😅

Should you be wanting more, here is Emma's top tips post:

healthunlocked.com/asthmauk...

8 Replies
TeachKat profile image
TeachKat

Thank you! Really helpful and clear information- and can I pre-book a cloned Asthma UK nurse for my gp’s surgery - pretty please?

twinkly29 profile image
twinkly29 in reply to TeachKat

It would be good wouldn't it! I literally don't understand how some doctors and nurses (not just primary care either) are still so out of date in their thoughts on asthma or the advice/support given. But honestly believe if the good was more widespread then many more people would have that control and not need referrals - which of course would help those who do.

Muldrew profile image
Muldrew

Thank you for this so helpful

I think it’s worth adding that there is an overlap with COPD which is worth thinking about when analysing your experience

Many people get hung up on finding a trigger but could just be hot or cold weather or pollution

Not sure if helpful to mention medication but TRELEGY seems pretty good

Finally exercise is vital I was very lucky to go on a Physio led 10 week exercise and health education course

Although not able to cycle or walk v far still do routine everyday

But these are just some thoughts you covered it all so well

Especially the discussion on remote consultations very helpful

Thank you

twinkly29 profile image
twinkly29 in reply to Muldrew

Hi, and thanks.

To touch on a couple of your points....

- hot/cold air, weather changes and pollution are all very common triggers for asthma so whether it's these or something that can be more easily avoided (like cleaning sprays or certain foods for example), it's important for people to know what makes their asthma flare up.

- I'm glad that medication works well for you - I deliberately didn't touch on specific meds because it's so personal as to which works well for each person. The key I suppose is if things are not controlled then part of a discussion with the GP/nurse needs to be does treatment need to be changed and if so what would be the next suggestion.

Muldrew profile image
Muldrew in reply to twinkly29

Hiya

You are right about triggers being important although sometimes the search can be counterproductive

And Of course medication is specific to individual needs and should be discussed with the care team

In fact my Asthma/COPD is not that well controlled and my health is gradually declining but obviously better than many others in these terrible times

Anyway thank you for all the information

mylungshateme profile image
mylungshateme in reply to Muldrew

Hey happy new year, I think, but I may be wrong twinkly was just trying to cover the very basics of asthma almost what to expect when diagnosed in an ideal world. Instead of "you have asthma bye" 😆🤣.

So not more complex lung issues that can mimic or go with asthma such as COPD BPD just to name a few, weren't mentioned as not to confuse people whose minds are already boggled with getting heads around PF, preventative and reliever 😂.

And yes the weather can be triggers for some individuals but not all, same as some meds are brilliant for some but have horrendous affects for others that out weigh the positive so not always an option or not quite at that stepping stone yet. So really is a generic informative platform post without specific tailored info. 🙂

Muldrew profile image
Muldrew in reply to mylungshateme

Happy new year to you too!

Sorry just responding with my own experience Didn’t mean to muddy the waters

I did find your post and twinkly’s very helpful

Thank you

mylungshateme profile image
mylungshateme in reply to Muldrew

Not at all I didn't want you to think COPD had been down played or anything there are some really informative posts re other more complex issues that I found on here its brilliant I've learnt so much! X

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