Precision Medicine - heard of it? - Asthma UK communi...

Asthma UK community forum

17,627 members22,019 posts

Precision Medicine - heard of it?

AsthmaUK_Nurses profile image
AsthmaUK_NursesAdministrator

As part of our research, we’re looking into what precision medicine means to people with asthma. We’d love to know: is precision medicine something you’ve heard of, and if so what do you know about it?

healthunlocked.com/asthmauk...

40 Replies

I have never heard of precision medicine - what is it?

Dani_AUK-BLF profile image
Dani_AUK-BLFAdministrator in reply to jodew

Hi Jodew, thanks for your reply. We'll post some information on what it is tomorrow, at this stage we're keen to hear what people do or don't know, so we're able to fill in the gaps!

I’ve never heard of it either. Please could you explain it?

Dani_AUK-BLF profile image
Dani_AUK-BLFAdministrator in reply to MaggieHP

Hi Maggie, of course. We'll wait to see what people do or don't know about precision medicine already, and will then send some more details.

Maybe working towards the most perfect treatment and dosing? I have never heard that term either.

EmmaF91 profile image
EmmaF91Community Ambassador

I’ve heard of it. But only vaguely and never in asthma circles if that makes sense.

Thy way I understand it; It’s goes against the ‘one size Fits all’ medical theories that’s most often used and instead looks at more individual treatment looking at the persons genes, environment and lifestyle etc to help prevent and treat diseases.

The only one size fits all treatments I know of are only in a few specialties including cosmetic surgery and dentistry. Anyone know of any others?

EmmaF91 profile image
EmmaF91Community Ambassador in reply to Usa2elsewhere

In the uk it’s applied to a lot of conditions. For example; asthma = ventolin and steroid inhaler. And steroid tablets for flares. However some asthmatics don’t respond to steroids it all. It’s only been relatively recent that they’ve recognised that not all asthma needs steroid tablets and that they need to work out the specific phenotype of asthma. (I think phenotyping only became a bigger thing when MABs became available). Equally it’s doctors who say ‘oh you have asthma? You must get rid of your pets’ to everyone even when the person isn’t allergic or triggered by them... the other one is everyone assuming stress if a trigger for every asthmatic (etc etc)

the one size fits all for asthma is slowly fading but really only at tertiary hospital and really good secondary hospitals (in my experience anyway).

As an osteopath I see it a lot too in MSK 😅 (in the uk we aren’t doctors we’re allied healthcare) - 90% of my patients who see their GP for back pain get told they have ‘sciatica’ and the same for shoulders cause they are all frozen. No matter what the actual presentation is 🤦‍♀️. And they get given the same advice and treatment plan. When a patient then comes to me and has full movement in their shoulder, it isn’t frozen... about 1 in 20 patients from GP have what the GP diagnosed and set up treatment for... 😅 the MSK physio I know say the same thing 🙈😅

twinkly29 profile image
twinkly29 in reply to EmmaF91

And "anxiety is a trigger for all asthmatics". No it's not!

Lysistrata profile image
LysistrataCommunity Ambassador in reply to twinkly29

Let's not forget also 'if you don't have xyz features it can't be asthma, it must be all anxiety'.

EmmaF91 profile image
EmmaF91Community Ambassador in reply to Lysistrata

Yeah. But that happens even at tertiary if they don’t see you when acutely unwell... and they are meant to be more precision focused...

Lysistrata profile image
LysistrataCommunity Ambassador in reply to EmmaF91

I refer you to my answer below lol. Anxiety is something they feel they can treat. They perhaps don't realise they may be the cause...

MaggieHP profile image
MaggieHP in reply to twinkly29

“Anxiety”, rather like that other favourite “stress”, seems to be the catch all for anything that can’t be immediately explained when the patient doesn’t have a temperature so it’s obviously not that other catch all “a virus”.

twinkly29 profile image
twinkly29 in reply to MaggieHP

Yes and it's always definitely the cause of asthma issues or in fact is what the non-classic-asthma issues are instead!

I have never heard of precision medicine - what is it?

Dani_AUK-BLF profile image
Dani_AUK-BLFAdministrator in reply to Wheesy

Hi Wheesy, we're waiting to see what people do or don't yet know about precision medicine and then will post some more information on it very soon

Sounds like something beyond the resources of the NHS.I haven’t heard of it, rather I’m alarmed at how little specialist support there is for asthma where I live... probably better in cities.

I'm in a metro area in the USA and a fairly upscale area too and my allergies wasnt concerned about my 720mcg daily of steroid. The new allergist who took over his practice immediately wanted me to decrease by 180 and at next appointment wanted me to decrease by 180mcg more. So if there is precision dosing used at that office, doctors are disagreeing on what they want patients to take. I'll be so glad to move away and start all over with new medical providers, as some of my others are not so great either.

No , haven’t a clue .... but looking forward to reading tomorrow post ... Thankyou for information in advance

Never heard of it, although I used to work in a research lab that was developing techniques (DNA microarrays) for personalised medication.

I’ve never heard of it too, but anything g that treats us as individuals is a bonus as far as I’m concerned. Look forward to learning more. Jo

Hi, I have not heard of the term precision medicine in asthma. I am aware that in breast cancer the treatment is targeted depending on the different markers that are tested, so guessing that it might be something similar?

In its simplest form I believe it may look at treatment types and doses?

Also checking if triggers are allergies or not, and if so, what?

At a personal level, I do wonder why 40mg pred is prescribed for an individual who is 50kg v 120kg as an example.

I await the actual description with great interest, thanks

Poobah profile image
Poobah in reply to Bella-Bestia

I've had the discussion about med dosage with my GP. I suggested that maybe a dose was based on an average male and therefore may not be suitable for an average female, just as doses are adjusted for children.

I've never heard of precision medicine. To be honest, asthma creeped up on me, I was using an inhaler than all of a sudden I had an asthma attack. No-one has ever explained to me what kind of asthma I have, what is an attack and what isn't. I haven't asked questions because it seems a minefield, however I find out lots on here so will look forward to your article.

No. Not heard of it either.

Dani_AUK-BLF profile image
Dani_AUK-BLFAdministrator

Hi everyone, thanks so much for your comments. It's been really helpful for us to understand what people already know about precision medicine.

There's lots of different ways of explaining precision medicine in asthma, but in short it's a treatment that we're likely to see lots more of in the future, which looks at all the factors that make up you and your health. It considers things like your genetics, body's processes (biomarkers) and your lifestyle which all influence the type of asthma you have and the likelihood of your body responding, or not responding, to certain treatments. Treatments, such as medication, can be tailored more effectively to you, rather than the 'one size fits all' approach which is based only on the symptoms you have, and which we know doesn't work for everyone. It means that in the future, doctors will be able to use blood tests and other ways to find the best possible match between treatments for asthma and people with asthma.

I hope that helps, thank you again for your input.

It will be really interesting to see how this actually filters through levels of care for those of us with "diagnosed severe but less obvious, less classic" forms of asthma.

In theory it should be wonderful - personalised treatment that suits us and all that.

However my experience of tertiary care (for me and for others in vaguely similar situations) has been "you don't fit what's in my [tertiary consultant's] head as asthma so I'm not interested" - and their views can be scarily narrow and immovable.

Secondary care however has been (for me at least) far more supportive and understanding and, to a large extent, they are already doing this personalised approach - for which I'm very grateful!

So hopefully it will transfer to tertiary care too....but we'll see....

Celie1 profile image
Celie1 in reply to twinkly29

Hi Twinkly,I was interested in your comments, probably because I can feel myself going into the same category as you 🤦🏻‍♀️(though fortunately not as

severe ).

Can you feel a few questions coming?😆

In your experience how are the consultants different between secondary and tertiary care? Do you move between secondary and tertiary depending how your asthma is behaving?

Also are they different kinds of specialists or just have differing opinions?

twinkly29 profile image
twinkly29 in reply to Celie1

I will message you - I don't want to completely derail this post... 😬🤣

Exactly this! My asthma won't necessarily be apparent on a blood test, or standard asthma tests; so where does this leave us? Asthma is being more considered recently as a syndrome and may not always have identifiable biomarkers.

This concerns me in that this may push consultants to undertreat or dismiss asthma if you don't have that common/classic phenotype such as allergic/eosinophil driven asthma. I would hate consultants to purely rely on numbers rather than the patient sitting in front of them.

Yes so much dismissing goes on when it "doesn't fit" or show in tests.

Lysistrata profile image
LysistrataCommunity Ambassador in reply to Melanie1989

See my reply below... I'm concerned this is already happening at times. Eosinophilic inflammation happens to have good biomarkers, treatments, and predictors of response to treatment currently, but this shouldn't mean that aspects/traits which don't, or can't be easily treated yet, aren't important. Of course precision medicine done well would acknowledge this, but will it in reality?

Lysistrata profile image
LysistrataCommunity Ambassador in reply to twinkly29

Sadly as a bit of a 'unicorn' in tertiary care, I have found that they are implementing something which kind of looks like it might be precision medicine to some extent according to this description. However, in my personal experience (and I know this may be different for others), it seems to have edged out actually listening to patients or any kind of partnership in care.

On the plus side, I've learned that oral steroids don't really help me and have been able to stop using them, which I am very grateful for.

On the minus side, I get the distinct impression that they want me to have traits they can actually address. If you don't (and as yet not all features are easy to identify and treat) they aren't hugely keen, and they definitely don't seem interested in my observations about patterns, variability and triggers. It's been very much 'let our machines tell you what's wrong, we don't trust your observations or your knowledge of your body, or anything we can't yet measure easily on the spot'. If I try to counter this, it feels like I get 'so are you saying you don't want personalised/precision medicine? Steroids are bad for you/that biologic won't help you'.

No, I don't want steroids that won't help, and I definitely agree that there's no point using targeted treatments on someone if it isn't likely to help. I want them to listen and work with me, and to acknowledge that while some things can be identified and treated already, not everything can.

Apologies, a bit of a rant there. I really like the idea in theory. I guess I'm just saying like anything else, I'm wary along with Twinkly of how it actually works out in real life, and how it's viewed by healthcare professionals.

Exactly this, I couldn't agree more!

MaggieHP profile image
MaggieHP in reply to Lysistrata

That, sadly, has been the case for decades and, also sadly, applies to many medical conditions! I often wonder if doctors had listened and taken on board observations made by patients decades ago our understanding of asthma (and other medical conditions) might be rather better than it is now.

Lysistrata profile image
LysistrataCommunity Ambassador in reply to MaggieHP

Sadly that is the case, I agree - it wasn't necessarily any better without the machines, just different ways of these problems manifesting themselves. It does seem however that precision medicine alone isn't going to be enough if it isn't used in the right way (like any model of care).

I am definitely grateful for not taking unnecessary steroids though - but then how do I define an exacerbation without them, when they're still so woven into the approach to asthma? I hope that's something precision medicine does address, especially with a potential new treatment on the horizon for people with an asthma type like mine that doesn't respond well to steroids.

At the moment I'm definitely experiencing an air of 'look at our shiny machines, we don't need anything else!' (That's almost what I was actually told last time: we don't need to listen to you, we can just use our machines. I've literally had a more tailored and helpful interaction with a customer service chatbot than I do in clinic much of the time.)

MaggieHP profile image
MaggieHP in reply to Lysistrata

Tick boxes and machines. Too many medical professionals these days don’t seem to be taught to think outside the box, or to consider the fact that symptoms can actually be more useful in determining a problem than numbers.

Sounds expensive to me. I do hope the expense of detailed tests will not derail its implementation as surely we all know different people respond differently to the same medications.

The use of biologics in asthma is a great example of precision/personal medicine. If you do not fit the criteria for eligibility then the medics can be pretty sure that the drug won’t help your particular phenotype of asthma. So it seems that precision medicating has actually been around and been in use for some time in this aspect of asthma treatment but without many people realising it.

Due to the high cost of biologic drugs atm this is surely a great step forward...?

Interesting post - thanks!

😊👍

Nope never herd of it.

You may also like...