Adult onset.....not chronic??🤷‍♀️ - Asthma UK communi...

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Adult onset.....not chronic??🤷‍♀️

Soniabrown
Soniabrown

Hi everyone. Gosh I'm confused/worried.....maybe even scared?

I'll try and keep this short...I was very poorly with my chest in January/February, doc kept saying he thought it was asthma or bronchitis...but I also needed treatment for chest infections...I didn't improve until we tried clenil along with ventolin.....fast forward to covid 19, I haven't yet had diagnostics to prove asthma or bronchitis, I did fit in a CT scan before lockdown....I came home from work mid March ( when things got serious and government said practice social distancing strictly if you have chronic asthma) and haven't been back, assuming I had chronic asthma, and decided that strict social distancing meant not working with very small children.....asthma nurse agreed and gp agreed at this point.....so, CT results back today, no Bronchiectasis, didn't know that's what the doc was looking for....so, I've spoken at length to the doc today....he now says, I probably have adult onset asthma, which is not chronic asthma?? And, since there is a small cyst on my CT scan(nothing to worry about apparently) but nothing else such as Bronchiectasis, then I should go to work and practice normal social distancing.....I mean, obviously its good that my CT scan shows nothing as such, but why is adult onset asthma not as serious as chronic asthma? I mean, I've only just got the flippin thing under control with two puffs of ventolin followed by 3 puffs of clenil, twice a day......and now I have to face the super spreaders that are my usual daily charges (4 and 5 year olds)....I'm frankly baffled by all this, I do fit the description of a candidate for adult onset asthma, but I'm uncertain about risking the germs? I don't understand how having adult onset asthma makes me less vulnerable than having chronic asthma?........🤔

52 Replies
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I would have thought all asthma was chronic because it means ongoing. Maybe there's a different meaning for it though 🤷. Adult onset is as it says. Perhaps they mean that it's mild or under control? Can you phone GP and ask for more clarification?

I think they're less concerned about controlled asthma or lower level asthma in terms of risk (the risk not being getting covid but complications if one does get it). At the moment, being new to it and having had weeks of getting it controlled, it probably doesn't feel 'lower level' to you, which is understandable - but in the grand scheme of things it probably is. That said, it might be worth discussing it with your employer because any asthma is 'vulnerable' so if there's a way they can help reduce face to face contact then they should. Although with small that's not going to be easy.

Thank you, that kind of makes sense, though I researched, as you do, and there seems to be some evidence that adult onset is likely to be less well controlled and possibly more likely to flare?🤷‍♀️

I really don't know....but, without my gp sanctioning me being off.....he actually said, go back to work, practice normal social distancing!🤦‍♀️ then, well... I'll have to go back.......wish me luck, because, it appears that's the only thing standing between most peeps and covid 19....

It may well be less likely to be controlled but that doesn't mean it will be the case for everyone; many people with adult onset asthma have good control. I suppose it's like anything - asthmatics could be more at risk of colds and flu (and many are) but that doesn't mean they can't do normal things.

I'm sure that's true yes, and in a sense that's what my gp is saying...'go about your normal business at work' .....it just seems to jar with the government insisting asthmatics are more at risk of complications? Maybe I'm just being overly dramatic anyway......

You're not being dramatic, just confused and worried - understandable anyway but moreso because this is all still new to you.

The NHS says this

nhs.uk/conditions/coronavir...

scroll to the "moderate risk/clinically vulnerable" section.

My suggestion would be to use that, along with the government's bit about the clinically vulnerable minimising contact outside the home, with work. Explain that obviously you don't have to stay at home all the time BUT that being in face to face contact all the time with children who obviously have no concept of social distancing is far from what is being advised for asthmatics, and is there anything that can be done to bridge the gap.

Also maybe phone the Asthma UK nurses for advice?

Good advice, thank you.....do you ever just feel like the more people you speak to (nurses, gps etc) the more confused you become? I think I shall call my head of school.....and sort of lay it out and see what she says.....

Definitely. If you get lucky with a GP or nurse or whoever, it's ok. But so many people get told stuff about asthma that's not right. But then when it's a supposed expert telling you, what are you supposed to do?!

I hope your head is understanding. I taught Reception for 12 years and my head would have been as supportive as she could sensibly be so I hope yours is too.

Yatzy
Yatzy
in reply to Soniabrown

Maybe phone the asthma UK helpline before phoning school? They’re very up to date on asthma and it’s link with covid-19.

It would be good advice to be able to pass on to your headteacher, who is not a medical specialist after all.

0300 222 5800

(See my updated reply below)

Paradigm
Paradigm
in reply to Soniabrown

They're working out who needs to stay in based on the level of steroid you have, not only because it dictates severity of asthma but also because the steroids themselves lower your immunity.

I don't know what strength your clenil inhaler is, but it's unlikely to be high dose and they would probably expect another inhaler at least. Officially, it's based of steroid tablet or injection courses. Though I was included on inhaler dosage.

I appreciate it's not much reassurance when your asthma is getting you down and you have to work with children. (Until recently, I did too.)

I have non allergic adult on set asthma. I am also classed as mild risk asthmatic.

Hi Sonia.

As someone who has asthma you are classed as clinically vulnerable. This is different form extremely clinically vulnerable ie those who have had letters advising them to shield.

However, as someone who is clinically vulnerable you are supposed to minimise contact with anyone from outside the home and adhere to social distancing.

I don’t see how you can adhere to the advice in a primary school setting, especially with such small children.

I would advise the headteacher of your situation and explore the possibility of being furloughed. If she refuses ( doubtful) I suggest you contact your union rep.

Soniabrown
Soniabrown
in reply to Troilus

Hi Troilus, that's the problem you see, my gp says adult onset asthma, which is what he says I have, is not the same as chronic asthma......and the clinically vulnerable group does not include people with adult onset asthma? Hence he says I should go to work...........

Troilus
Troilus
in reply to Soniabrown

Hi Sonia, asthma is asthma. It doesn’t matter when it manifests itself. I have adult onset asthma, but I am still in the extremely clinical group.

Soniabrown
Soniabrown
in reply to Troilus

So, I'm assuming that is because you have had hospital admissions and oral steroids or other conditions maybe? I can see how that would be yes.....I mean, I agree, I can't see any sense in saying I'm less vulnerable because my asthma showed up in adulthood ....rather than years ago.....but he was adamant that I am not in the vulnerable group.....I mean, what on earth do I do? Thanks for sharing your situation anyway.....

All asthma is included in the clinically vulnerable group. At Troilus says, asthma is asthma. For your GP to say it's not chronic is silly. Unless it's acute (ie attack or flare) then surely it's chronic, ongoing. So it could be chronic but still well controlled. Unless they mean it's not constantly causing a problem because it's controlled. But then they should use appropriate terminology!

Well, now you see what I mean about it being confusing!😊

I still can't work out the logic to what your GP is saying at all. Why on earth would the age you got it make a difference to vulnerability?!? Is there any way you can get hold of a different GP who isn't spouting this confusing nonsense, in the hope of sorting the work situation out?

I may try that.....but I've no idea how that would work during a lockdown, I can't see anyone, there is only the one gp providing telephone consultations at my surgery.......asthma uk might be the way to less confusing advice I feel?....

Yes I agree with Lysistrata.

And it is confusing but only because your GP is saying ridiculous things.

Troilus
Troilus
in reply to Soniabrown

Hi Sonia.

I found this and thought it might be useful to you.

6. Clinically vulnerable people

If you have any of the following health conditions, you are clinically vulnerable, meaning you are at higher risk of severe illness from coronavirus. You should take particular care to minimise contact with others outside your household.

Clinically vulnerable people are those who are:

aged 70 or older (regardless of medical conditions)

under 70 with an underlying health condition listed below (that is, anyone instructed to get a flu jab as an adult each year on medical grounds):

chronic (long-term) mild to moderate respiratory diseases, such as asthma, chronic obstructive pulmonary disease (COPD), emphysema or bronchitis

chronic heart disease, such as heart failure

chronic kidney disease

chronic liver disease, such as hepatitis

chronic neurological conditions, such as Parkinson’s disease, motor neurone disease, multiple sclerosis (MS), or cerebral palsy

diabetes

a weakened immune system as the result of conditions such as HIV and AIDS, or medicines such as steroid tablets

being seriously overweight (a body mass index (BMI) of 40 or above)

pregnant women

As above, there is a further category of people with serious underlying health conditions who are clinically extremely vulnerable, meaning they are at very high risk of severe illness from coronavirus. You, your family and carers should be aware of the guidance on shielding which provides information on how to protect yourself still further should you wish to.

I think your GP is confusing the two categories. He is right in that you would not qualify for the extremely vulnerable category, but as you can see from the above you do qualify as clinically vulnerable.

Soniabrown
Soniabrown
in reply to Troilus

I agree, he kept saying I wouldn't get a letter......and I was saying, yes I know, I don't expect or need a letter! Maybe he thought I was asking for a shielding letter.........that actually makes more sense, because everything I read that makes any kind of sense at all agrees that asthma...is asthma, end of......and that, unless you have been hospitalised, or needed ex amount of steroid tablets in the last year ......you just have asthma, and are therefore clinically vulnerable, meaningyou should be stringent in your social distancing?? Have I finally nailed it?? 🤣🤣🤣

Troilus
Troilus
in reply to Soniabrown

Yes, you certainly have! You now have a better understanding than your GP 😁

All asthma is chronic once you have it. It is not a specific term.

gov.uk/government/publicati...

This above is the section of the advice given out to staff who work in the childcare and education setting. I hope this makes it clear what you can do in terms of minimum your risk.

You can't be discriminated for being in the vulnerable group of people. I know its hard for you and you want to get back to school but your health comes health.

I am in a similar position as you as I work in childcare and education sector. However unlike you I don't have a permanent job as I work for an agency doing TA and nursery nursing. I have email my agency to see if they can do anything for me.

Thank you elanaoali.....I have read that document inside out...took hours😅 anyway.....it doesn't seem to change the situation I find myself in.....mostly because, I've been going by the advice that I am vulnerable since gp said asthma......but turns out he now says adult onset....and not chronic?? I'm still non the wiser, but I appreciate you all trying to help me 😊

Yatzy
Yatzy
in reply to Soniabrown

As others have said, asthma is asthma, always chronic. I have adult onset asthma, and I’m shielding, because I’m in the category of having a high steroid inhaler, take Montelukast too, and also intermittent steroid tablets (prednisolone) The government guidance for schools says, very vulnerable stay at home, working from home as far as possible; vulnerable can be in school but not in face to face contact with others. So not actively teaching in a classroom with children.

If your headteacher can find you a way of doing admin etc out of classroom, fine but if not, you should not be there Stay home, working on school prep etc as far as you can.

Your GP does not understand asthma fully nor the govt guidelines for school staff......not unusual I’m afraid.

The advice I gave previously in a reply was before I’d read the school guidelines. I’m a retired headteacher, that’s how I would follow the guidelines. Not easy!

Soniabrown
Soniabrown
in reply to Yatzy

I agree, this is the conclusion I have now reached, thank you for your input. I'm going to speak to my head probably tomorrow and see how the land lies.

Very strange advice from your g.p! As others say asthma is asthma. Late onset is just that, it means you were diagnosed as an adult. The pathophysiology is the same. It is by no means it's own classification and is classed as chronic as there is currently no cure for asthma. If i was you i would carry on your strict social distancing and perhaps consider another g.p! Good luck!

I tend to agree with you here......but, I'm worried about the fact that he won't support my decision to stay home.....I don't know if schools are going to ask for notes or documents?

Could you possibly talk to your respiritory nurse at the g.p's? You are also within your rights to seek advice from another g.p, which i definetly would!

As everyone says asthma is asthma and based on the revised guidance following on from the OM’s address on Sunday you are definitely in the clinically vulnerable group and should try to stay away from anyone not in your household.

Adult onset asthma is, or can be, as difficult and problematic as any other asthma especially if it becomes regularly recurring, and if this happens it would be appropriate to call it chronic. And adult asthma often does become recurring.

If this is the case and you are a chest-prone type of person, then if I were you, I would not be doing normal distancing and I would not be working with children, and I would NEVER go on the tube. The UK will never get rid of this thing while people travel on the tube. Its fascinating how they think they will. Ask your doctor if he will take the tube to work, ....hahaha, of course he wouldnt. No doctor, whether GP, epidemiologist or anyone else clued up will EVER take the tube. I just dont believe they would. Packed in like sardines...who would do this if they understood the medicine of covid 19? One doesnt need to be a doctor to see this. But while GPs will happily tell naive people like you ( I mean medically naive, im not meaning offence here) that it is ok to do normal distancing with your condition, ( which means take the tube) , I will eat my old felt hat if they would take it themselves.......

They would be VERY aware of their lungs........and they would be taking extra care, regardless of what they might actually tell you.....

Soniabrown
Soniabrown
in reply to bess7771

A valid point.....it begs to be asked....I am being told on the one hand that normal social distancing will be fine with my asthma........but not to come to the surgery as the nurse isn't seeing anyone face to face because it's too risky??🤷‍♀️

I agree with all the above. As far as I am concerned asthma is asthma, although obviously there are different severity levels. Mine came on in my forties, and is well controlled. I would also be hesitant to go back to working with small children at the moment, although evidence is emerging that those with asthma are not as much at risk as first thought.

medpagetoday.com/infectious...

Yatzy
Yatzy
in reply to Valsha

Interesting and reassuring article. I think I’ll want further evidence before I’d feel confident it’s actually true, but promising! I’ll still be shielding.

Soniabrown
Soniabrown
in reply to Valsha

Wow, that's an interesting read.....my mum, who was an asthma nurse as part of her long nursing career ( she's in her middle seventies now) did suggest to me once,( long ago)😁 that she had always thought that established routines of inhaled steroids in asthma sufferers, as in well controlled I think.....could actually provide protection from 'germs' ....long held belief in her profession she said??🤷‍♀️🤷‍♀️

I just remembered when I read that....if that's the case though, wouldn't the medical bods involved in the covid 19 meetings know that??? Or are they saying we're more vulnerable, because its respiratory, kind of standard response?? Oooh.....so many questions.....my thoughts are unaltered however....we must be very careful!😊

I’m confused by your GP,it can be just as serious 🤷‍♀️ I had adult onset asthma after a long bout of chest infections, bronchitis etc etc, for me nothing seemed to make it better and I was having attacks all the time and eventually referred to the hospital as the gp said they can’t do anything else for me, it was an awful time and I remember walking down my drive and feeling like I ran a marathon, trying to cook tea and I would get so tired I wouldn’t be able to do it. Fast forward a few years and I’m now relatively under control but have had a recent stay in hospital. I do have a 12 week shielding letter, I’m 8wks in so for your GP to use adult onset asthma seems ridiculous, maybe it’s more because your asthma is under control?? I would be asking for clarification.

Hun like you I'm confused diagnosed with asthma at 5. 51 yrs ago. On uniphylin Relvar ventolin. No shielding letter school reopens in june. Many times in hospital over yrs heart stopped a few times intensive care. Rang gp yesterday spoke to locom. Said I didn't fit criteria for shielding as not been in hospital over last 12 months? Go figure scared to death

Oh boy! That is scary! I mean, up to now my school have put me in the category of working from home? Is yours doing that? I could, in theory, just not go back until September I suppose........but, I think that might be worse, I mean, going from no contact with the outside world, to full time germ soup immersion in September??

Regardless of there being a pandemic, as an asthmatic you are covered by two pieces of legislation that protect you in the workplace. The Health, Safety and Welfare Regs & The Equality Act 2010.

Bridging these two means that you are entitled to reasonable adjustments in the workplace in order to protect you from identified risks.

I'm sure that your Head is very aware of these issues and is able to arrange the occupational health assessment that will take into account your asthma and the risks posed by your specific workplace and Covid-19. The assessment will then be able to recommend reasonable adjustments to minimise your exposure to the risk in the workplace.

Reasonable adjustments can vary from giving you alternative duties so that you can work away from the risk to working from home.

So have a chat with your Head and explain that you can return to work if reasonable adjustments are made now that your asthma has been diagnosed.

As for your GP, they are not great when it comes to occupational health matters which may explain the confusing conversation. I'd forget what he said about "chronic". When you talk to the Head, just explain that you have adult onset asthma and that in spite of it now under control through ongoing treatment, you are at risk if you contract Covid-19 and as such, need an occupational health assessment to identify reasonable adjustments in the workplace. I wouldn't be surprised if the Head applies common sense and gives you alternative duties anyway, many have.

All the best.

Soniabrown
Soniabrown
in reply to Poobah

This is really helpful thank you! I hadn't thought of it like that....I think my best course of action is to do precisely what you suggest Poobah.....have a chat, ask for occupational health assessment.....I think as well, after many heated discussions at home....that seeing as how I earn my living by looking after small children, I might be better going back before September, because it would likely be one day a week, adjusted duties.....rather than waiting all summer and plunging in to the germ soup full time in September? Or am I being silly there?

Poobah
Poobah
in reply to Soniabrown

A good assessment will give a projection of adjustments, especially when the situation is going to change. So it could suggest what to do now but also what to do when things change. Your employer has a duty of care towards you so will follow the assessment recommendations.

The recommendations shouldn't be optional on either party otherwise you undermine the process and leave your employer in an awkward position.

Wait and see what recommendations are made before making any decisions. An informed decision is better than jumping the gun.

All the best.

Hi, I'm surprised your doctor didn't diagnose your asthma from the CT scan. Is he a GP or respiratory specialist? My CT in 2018 showed small airways disease (the technical name for asthma). When my asthma first came back from childhood my GP kept coming up with theories like acid reflux. After having a discussion with my asthma nurse I went back, saw my GP and insisted on seeing a respiratory specialist, and my GP had to agree. What I found really scary about my GP is that she kept saying it wasn't asthma because I don't wheeze, just gasp for air and I should go back to work (which I did and ended up collapsing there). Take care and keep fighting for a proper diagnosis.

Wow! Again, what a journey......it was my gp, and he's mentioned acid reflux, which I suspect I also have, although I didn't see the connection at the time........I think, when I can actually see him, I shall probably ask if I can get a referral to a specialist, he'd have to admit he's not been sure the whole time that I'm dealing with.....so I don't think that's unreasonable.

You're not being unreasonable at all asking to see one. A respiratory specialist will give you the best advice on how to control your asthma, what medications you should take and how to stop it getting worse (like mine was). I realise they are probably stretched at the moment, but they might be able to see your CT scan and possibly offer a phone consultation. A general practitioner (GP) has very limited knowledge of asthma and lung conditions.

Yes, I believe the better option at the surgery is the asthma nurse, just because its her specialism. I might see about a phone consult, worth a try.......😊

I too have adult onset asthma last time I saw a gp in March this year he told me the asthma nurse had more knowledge of asthma than he did which I thought was shocking or maybe I'm just naive.

Soniabrown
Soniabrown
in reply to reiver

To ge fair, I have the same impression? I mean, mine didn't say that but it's the nurses speciality....whereas, the gp has to have wide knowledge of lots of conditions but not really a specialist in any?

Give Asthma UK helpline nurses a call they are fab

Is there any chance he could have been saying that you were having an acute exacerbation with an otherwise mild asthma severity? So your severity of this episode is not the severity of the chronic course? Alternatively if this is the first time you have been diagnosed with asthma, he might have meant that you've not had asthma (outside of your illness) for long enough to diagnose chronic asthma so you've potentially got asthma?

Who knows? Not all doctors have expertise in the same areas.

Soniabrown
Soniabrown
in reply to Paradigm

Hi there, I'm sorry I don't really understand what you said?..... the very first time asthma was diagnosed, and an inhaler given, just ventolin then, was when I was in my early twenties, around 25 years ago......it faded away when we moved to a less polluted area.....and then when I got a really awful and long lasting chest infection last Christmas, 2018 that is, I was given ventolin again, no mention of asthma, just to open my tubes to help me. Then this, this year......??

Asthma severity can change over time, but it's also the case that undermedicated mild asthma can result in acute exacerbations (a temporary increase in symptoms, including up to an asthma attack).

So, it could be that you are having an acute increase in severity when usually you have asthma that is so mild that it doesn't notice.

Other people have more symptoms or need more inhalers/medications all the time to maintain control or reduce symptoms if they can't reach control.

So you might not have chronic severe asthma. It may be that your asthma is mild chronic.

To make things more confusing, they've changed the defintion so that you don't have asthma (which is chronic by definition) if you don't need a preventer and only occassionally need a reliever (blue).

Anyway, if they've said you have asthma then adult onset or not it is chronic.

It sounds like either your doctor needs to clarify what they meant or your doctor is misinformed.

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