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So Confused by sudden worsening of Asthma

Hi,

I've had Asthma as long as I can remember. But I've always gone through most of my life feeling like I haven't had it because it's been so mild that I haven't even needed a preventer inhaler... until 3 months ago.

I remember being out with my friend and feeling suddenly wheezy. Now, bear in mind that before this day I probably used my reliever 3 times a YEAR. Yeah, that's how good it was. So on this particular day I didn't think too much of it, took my reliever and assumed that I'd wake up the next day feeling fine. That did not happen. The day after I was at work, a normal day at work, I love my job, it's rare that I feel stressed about it, so this is just to point out that no triggers were present at the time. I started coughing, now asthma has never made me cough before, wheezy sure, out of breath, yes, but never coughing. I've never had a cough like it in my life. It's dry and I can actually hear the wheezing with each cough, whenever I've had a cough with a cold it's always been chesty and productive. This cough is like nothing I've ever heard, it scared me so much. I had forgotten to take my inhaler to work on this particular day so I got an emergency prescription from my doctors and picked up my Ventolin from the nearest chemist. It eased it but I was still coughing all day, and the day after. I thought maybe I had a chest infection so I waited it out. I'd have two days of coughing and one day of feeling fine. I was to-ing and fro-ing in my mind as to what it was, whether I should go to the doctors. I eventually went three weeks after the cough started.

They told me exactly what I didn't want to hear, that it was my asthma. The nurse asked if anything had changed in my lifestyle but I wasn't doing anything different. My diet, exercise, lifestyle, work, home, it was all the same. The ONLY thing that had happened recently was that I moved in with my friend 6 months prior to my asthma getting worse. Now she does have cats and a dog. I'm very allergic to cats, but I have lived with one before for 11 years with no asthma symptoms. They aren't allowed in my room and spend most of their time outside anyway and even if it was my new home environment, WHY HAD IT TAKEN SIX MONTHS TO FEEL THE EFFECTS OF IT?

Anyway, the asthma nurse put me back on Clenil Modulite 200 micrograms. It was two weeks til my check up. She told me it would take a few days to start working. Day 3 into taking clenil, I was at a wedding. I tried to dance and sing to ONE song and it was so difficult that I had to keep stopping to catch my breath, this had never happened before. Day 5 was the worst ever. I was due to go to London the following day as my American relatives were visiting, that didn't happen because I was up until 2am, unable to lie down until I could breathe better. I had taken my Ventolin 3 times that night. I was distraught. Finally on day 7 I felt like things were improving but I still didn't feel 100%. When I had my check up the nurse was very surpised when I told her how long it took for the Clenil to start working and to be honest so was I but she didn't question it and so neither did I, she sent me away telling me to continue taking Clenil for the next three months and I could review how I felt myself and if I felt ok then I could reduce how much I was taking and maybe even go back to taking nothing.

Four weeks ago I upped my dose of Clenil to 6 puffs a day because I was needing to take my reliever more and more again. I hoped that this would make things better. It didn't. Two weeks ago I went back to my doctors and I told them that I had upped the dosage and it still wasn't working properly. My asthma hasn't been keeping me up at night but it is now affecting my quality of life. I told the doctor this, and that I was wanting to start going for runs in the evening but was too scared to exert myself because I knew I'd have to take my reliever. I swim every Monday, I have done for the past two years. Swimming now makes me wheezy. Every. Single. Time. I can't do the amount of lengths I used to or go as fast and its so frustrating.

So the doctor has now put me on Fostair, the same one my dad is on. This made me really upset. My dads asthma is terrible, but even he told me the Fostair has basically made his breathing so good that he now doesn't take it at all.

I'm here because I'm angry, upset and confused. I've now been on Fostair for two weeks and I still don't think its working. I still cough occasionally, I still get wheezy, I have to sometimes take it during the day as a reliever, I still can't swim like I used to. My chest feels heavy and tight and painful every day. My mum keeps asking me if it's actually asthma at all, and it makes me wonder if the doctors have done enough tests. It's like the medication works for a week and then my body gets used to it so fast that it may as well be void. I know other people have it a lot worse than I do but I'm scared at the speed in which this is accelerating. I don't want to move onto whatever is after Fostair. I'm only just coming to terms with the fact that I have asthma after my breathing being so normal for so long. I'm 26 years old by the way, I was diagnosed as a kid but, like I say, I've never had it bad (although I guess I can't say that anymore)

Has anyone else been through something similar, where it's been so mild and then suddenly really bad? I just feel so alone in this and so frustrated that I'm sitting here three months after my cough started and still wondering if it'll ever get better.

Thanks,

Steph

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Hi Steph, welcome and sorry to hear that you're not doing too well at the moment!

You're not alone! I was a mild controlled exercise-induced asthmatic aged 13, then went through a similar situation to yours aged 19. Randomly started having issues, went through Ventolin like no tomorrow, couldn't eat/sleep/walk etc. and thought I had a chest infection. Saw a GP 2+ weeks after it started, no infection, sent home, 2-3 weeks later see a different GP told its an asthma attack (I didn't even know!) and given 5 days of prednisolone which completely resolved the issue (at the time). I have since flared up again aged 21 (which I poorly managed), then again aged 23/24 which had since developed into difficult severe asthma. I'm now 26 and am slowly gaining back control!

Just a quick question - through all of this, have you had any courses of prednisolone (steroids)? From the sounds of it you've had an acute attack, but never fully recovered and it could be that this is what you need just to knock it on the head. I had something similar last October - chest injection, 2 months of antibiotics, prednisolone and nebulisers 4x a day and I was still really bad - a week of hydrocortisone therapy and I left completely asymptomatic as if I didn't have asthma!

I'd suggest if you are ever at the point where you can't eat, talk, do daily tasks (walking/stairs/cooking etc.), don't feel safe to sleep/waking up and your Ventolin isn't working or last less than 4 hours go to A&E. They are much better dealing with acute asthma episodes and calming it all down than GPs who work well with mild symptoms or the slow worsening of them! Don't worry about 'wasting' A&E's time as they'd rather see a low level attack than a really bad one with causes more stress, meds, and paperwork for them!

Regarding your preventer if you don't think its working, keep going back until you find one that works! Don't worry about the brand you're on! There are 3 different key steroids in asthma inhalers, and some have additional different long acting relievers, and what works for one may not work for another (beclometasone inhalers do nothing for me but fluticasone works wonders... my mums the opposite).

If you think you have an infection, don't try to push through it, seek help, especially if its triggering your asthma! Better to stomp on it quickly, then feel rubbish for an age and get really sick (I was guilty of this aged 21!). Even the mildest of asthmatics can have real problems with chest infections, and can lead to long hospital stays!

If you're not sure that its actually asthma then maybe ask for a referral for a lung function or spirometry test (if you've never been officially diagnosed). There they'll be able to decide if you are asthmatic or not, and give you the correct support either way... usually though if you find Ventolin helps then you're likely to be asthmatic... I wasn't officially diagnosed until I was 24 despite being 'asthmatic' since I was 13.

Do you take a daily antihistamines? If not it could be that this helps calm things down (will calm your cat hair/hay fever triggers), if you are you could try asking your GP for a prescription antihistamine to see if it helps you gain back control! Cat wise I'm not allergic to my own but have issues with other peoples... it could be that the cat dander lowered your tolerance to other triggers and that the day out with your friend triggered an attack, which the cats have stopping you fully recovering from (if that makes any sense!)

Remember you are not alone in this, and feel free to rant on here and ask advise if you need it. If you're worried the Asthma UK nurses are really supportive (on here, on phone or on WhatsApp) and also have some good suggestions on there website, so scout that out if you're worried!

Hope this helps and that you start to feel better soon! xxx

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Hi Emma,

Thanks for your reply! It’s stacked with things I’ve never even thought of before!

May I ask how the doctors knew you had it since 13 if you weren’t diagnosed til years later?

I was diagnosed so young I don’t even remember what tests I had which is not helpful! My mum doesn’t remember either, I must have been about 5 years old, all I remember is my mum trying to get me to use my spacer for the first time and I thought it looked terrifying haha.

I have a check up on Monday, got any advice on what I should say/ask about?

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You’re welcome.

I was ‘diagnosed’ through responsiveness to treatment - I was a high level gymnast, was getting more SoB for no reason, saw my GP, given a ventolin and it ‘cured’ my SoB so was diagnosed as asthmatic 🙄. I was given a preventer as I trained 6 days a week for a total of roughly 26hr at my peak and left to it. Never explained signs to look for, what it was etc etc hence why I didn’t know what an attack was until I’d been having one for over a month!

If you were diagnosed younger than 5 you could still ask for a lung function/spirometry test as you’ve had a recent decline.

I’d ask about getting an asthma plan for you to follow, and a peak flow meter to keep tract of your peak flow (PF) throughout the day (assuming that you know what that is and what you’re best is!) ask ask for a peak flow diary to tract results. You can print the plan off of the asthma uk site and then get whoever you see to help you fill it in and it’ll give you a guide of what to do/where to go during flare ups (GP/a&e). They should have peak flow diary’s that you can use if not there are also charts you can print.

I’d broach antihistamines and possibly short term steroids, esp if you’re up in the night or having regular severe symptoms relying on your ventolin daily.

You could record you symptoms between now and then (time, activity, symptoms and severity, how much ventolin you used etc) so you have a clear copy of how it’s actually affecting your life. It’ll also show if you’re ‘overdosing’ on ventolin (another thing I’m guilty of) which will point towards needing steroids to avoid the side effects.

You could also fill out the asthma control test (ACT) and take that with you so they have something concrete to work off of to tract your progression.

As you haven’t had any steroids that’s definitely the thing I’d push for most as well as the action plan. If they calm it down in 24hrs you know it’s probs asthma and if after the course has finished it stays calm then it probable that you never recovered fully from the first attack and could possibly discuss scaling back your preventer if you’re back to normal.

It sounds like you’re still out of control (hence the trouble talking and right-chestedness) so the main thing is coming up with a plan to get that control back.

Hope this helps and if I think of anything else I’ll add it!

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So I’ve actually been tracking my peak flow since I’ve been on fostair, and the doctors said that my best before was 475, well I have reached 500 since being on fostair but I don’t feel like that means anything because I still feel like my breathing isn’t right.

I’m currently not taking my ventolin because I use fostair as my reliever too but I didn’t know you could overdose on i ! When I first started taking it I’d get trembles for ages before it stopped, I went to see a pharmacist about it and he said that the dose could be too high for me but it could also just be a side effect and my body might get used to it, it’s so confusing with different people telling me different things and also the same person telling you two different things!

Can you still do gymnastics now? Asthma must be the worst thing to have when you’re really athletic!

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I didn’t have a best PF until I was 21 And I hit 550 post a&e treatment. Now my best is 630 and I haven’t hit any higher for over a year so I assume that that’s my true best!

Yes ventolin can be over-relied on (they don’t tend to call it overdose because that discourages people from using it when they need it 😅). I can easily have 20-30 in a day and think nothing of it, but get the tremors, tachycardia and headache because I’ve had too much.

Fostair can cause tremors initially that you’re body adapts to, and from what I remember of my old fostair MART it’s a max of 8 a day (including am/pm doses). My hosp AN at the time said that after 8 your body doesn’t actually pick up much more the the drug so you don’t get much benefit from it.

Yes it’s frustrating when you get opposing information and you’re stuck in the middle not sure what to do... another thing to discuss next week! 😁

I can’t do much myself anymore due to asthma and injuries, but I do still coach gymnastics and turn the occasional somersault when I’m well 🙂🙃🙂😂

Hope things work out for you next week xxx

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Sorry, I forgot to answer your question! I haven’t had a course of steroids but the doctor said that would be the next step if fostair doesn’t work. The thing is, I don’t feel as bad as I did when this first started but I just feel like I’m in discomfort all the time, like someone is sitting on my chest. I don’t have problems walking/ sleeping but sometimes when I’m talking I notice that I have to stop and take a breath more than usual and it makes me self conscious at work because I think I’m coming across as nervous when really it’s just because I can’t breathe properly

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Hi Steph,

I can't add much to Emma's helpful reply but I was also mild after being diagnosed aged 7, and got to uni thinking I had grown out of asthma. I actually hadn't and not having an inhaler was silly as I did have some episodes but they weren't common.

Aged 23 I caught swine flu (in 2009, I lived in a London borough that was like a plague pit for some reason with all the cases!) and that brought it back but with extra triggers. With me it went to moderate then severe which it has been now for a few years (I am 32), but I don't think this is inevitable as it may well be possible to get on top of it - like Emma says, it's worth going back until you have a preventer that works and is the right dose. It certainly may be worth getting tested but I would also spend a bit of time reading up on asthma so you can be informed, as some drs do have a very basic approach and do not appreciate the range that asthma has - I say this because I am a bit of a freak and got told a lot that I didn't have asthma because I wasn't textbook. You want reversibility testing for spirometry even if your first test looks normal.

I see you posted asking the asthma nurses here about this - they are really helpful and it may be worth following up with a call as it can help to chat things through with them.

You would probably remember and the timing might be odd but you didn't get any flu like illnesses or colds recently? Of course not everyone has the same experience as me but it seems that can restart asthma off again!

Hope you can knock it on the head soon and get back under control. I agree with Emma that you should definitely go to A and E if you really struggle based on what she has said.

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I haven’t had a cold or flu since this started, I’ve had a couple of things that left me feeling really lethargic and achy but I think they were like two day viruses and I didn’t go to the doctors about it.

Thank you both for replying to this and offering advice, I’m so glad I’ve found somewhere that I can actually talk to people going through the same thing. I don’t really have any support from friends, not because they are bad people but just because they don’t know what I’m going through. I feel a bit safer knowing that I’m part of a support network now :)

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Hi Steph, I am in a very similar situation as you. Had asthma all my life, never really affected me/had symptoms unless I had a cold/chest infection.

September/October time last year I had a virus/cold, and it started my asthma symptoms.. and I haven’t been able to shake them since. Things that never used to trigger me, now cause me to have a massive flare. I used to run, and have had to stop for now.

Was put on clenil, then flutiform with montelukast alongside my ventolin which helped, but still couldn’t get rid of the chest tightness, cough and breathlessness when I try to do simple tasks. I generally don’t wheeze, which confuses a lot of GP’s too. And I often get ‘are you sure it’s asthma?’

The last 2-3 months have been awful for me. I can’t seem to get on top of it, currently on my 3rd course of steroids after a flare and two weeks off work. I feel like I can’t write down how much it’s affecting me, every aspect of my life it’s controlling- it’s just so frustrating and upsetting.

One thing I have noticed with my asthma is the more I stress about it/what’s causing it and how it’s controlling my life, the worse it gets. But I wouldn’t be stressing if it wasn’t there? It’s a vicious circle.

I’m on Symbicort now, with montelukast, tapering off my steroids and also got antibiotics incase as the GP feels I might have an infection. Just hoping once I’m over this bit I’m on the right track. My asthma nurse has just said it’s trial and error unfortunately to get on the right meds.

Keep going back to the doctor or your asthma nurse, that’s a mistake I made is i let it go on for too long thinking it would just sort itself out and would go away. The asthma UK helpline is also great - the nurses on there have helped me so much whe I’ve needed to speak to someone and given lots of good advice.

I really hope it gets better for you soon.

Linds xxxx

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Hi Linds,

I’m very sorry to hear about your situation, it sounds very similar to mine but obviously more severe.

I totally understand how you feel with the frustration, I’ve done nothing all day today because not being able to shake it is really starting to stress me out and I’ve spent all afternoon in bed, it’s so hard when you start to feel like you’re not in control of your own life and I won’t lie, a lack of control makes me anxious, it really is a vicious cycle. My mum has told me I need to stop getting so upset but I’m only getting upset because it’s not getting better!

I hate that it’s almost like we a guinea pigs with medication, I don’t like taking medicine at the best of times and I know it’s necessary to keep asthma under control but I hate that I’m inhaling steroids everyday now when I hadn’t needed to for 25 years of my life, I know the doctors say that asthma

has ups and downs but I can’t get over how mysterious it is as a condition. How can we be perfectly fine for years and years then suddenly have an attack with no triggers present? It baffles me.

If you ever need to talk please do just message me, it would be nice to have a friend to ride this unfortunate journey with.

Steph

Xxx

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Asthma is definitely a pain! I thought I had grown out of mine until 3rd year of university when it returned with a vengeance.

My first few bad attacks I really struggled with the stress of it all, although I’m much better with that side of things now. But it’s so difficult to deal with while they’re trying to get you on to the right meds!

When I sit and look at the pile of tablets/inhalers I have to take for my asthma morning and night it can be a bit depressing (especially having just turned 23!) but much as it is annoying it’s much better than having these horrible symptoms. And it’s important to remember that there’s every chance that things will go back to normal for you and you’ll be able to reduce any medication you’re on!

Take care and I’m always around to be messaged if people need a rant!

Jess :)

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Hi Jess,

Thank you for your lovely comforting message!

To be honest, I’m really surprised I didn’t have an attack at uni, it was the most stressful 3 years of my life and I went to counselling regularly, but I did have really bad eczema at the time so I guess the stress was coming out in other ways!

Ironically, I only got on top of the eczema last year after battling with doctors for 11 years to see a dermatologist and now the asthma is on the decline, such is life!

I think I’ll always be a person that stresses about things unfortunately. I’ve learnt how to take care of myself as best as I can over the years and my mind always knows what I need to do when I’m having a bad day but I think I’m just wired to be a worrier.

What medication are you on currently?

X

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Ah yes, good old eczema! Bizarrely my eczema has been much better since my asthma got worse too! Every cloud and all that.

Currently I’m on the higher dose fostair inhaler, spireva inhaler, aminophylline tablets, montelukast, fexofenadine (my antihistamine), a nasal spray, eye drops and maintenance prednisolone for the asthma/allergies alone!

And sadly everything is at the max dose - so my consultants are hopefully assessing me for fancy biological injections soon as we don’t seem to be getting anywhere with the other stuff! BUT I’m managing to reduce my steroids down and am on the lowest dose I’ve managed so far this year - so there’s some positive progress at last 😁

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OMG I didn’t even know you could be on all that at the same time!

At the moment I’m only taking Tesco’s own antihistamines, do you think it’s worth asking the doctors for stronger ones?

The thing is I’m not even sure if allergies are causing this, it’s all happened so randomly but then I do feel like I’m allergic to life and should just be kept in a sterile box room until I die 🤔

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If you shook me I’d rattle!

If you suffer with hayfever or allergies it may well be worth talking to your doctor about it - or asking if you can be referred for some allergy testing if you think something like that might be contributing.

Haha I definitely know that feeling! I’m also seeing a separate team now too because my immune system is essentially a bit broken 😂 so my family keep threatening to cover me in bubble wrap and cart me around in a trolley or something!

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Ive already had some allergy testing done, the first result I got made me laugh. I’m highly allergic to dust. Great. What am I supposed to do about that? (This is where the sterile box would come in handy 😂)

I don’t know what other options there are for allergy testing so far I’ve had a blood test and patch test, bizarrely the patch test came back negative, biggest shock of my life so far, I was so sure the result was wrong that I wouldn’t leave the dermatologist alone until I was 100% convinced.

I love that you have such a positive attitude about all this, I suppose you have to adapt one when you’ve been through what you have!

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I'm not allergic to anything according to my tests, done several times! However, something is setting my hayfever off and I notice if I don't have fexofenadine and Avamys spray in spring and summer.

My consultant is sceptical that I even have hayfever because my asthma appears to be non-allergic. I admit this is weird but asthma can be weird! I don't qualify for any of the fancy injections even though I am.poorly controlled, because I have the wrong sort of asthma.

I.did once get told by a resp consultant with an interest in allergies (saw me during an admission, not my usual one) that allergy tests can be useful if positive but negative ones don't tell you much as false negatives seem quite common.

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Oh I know it’s a really helpful allergy to have isn’t it? 😂 yeah it’s generally either blood tests or skin prick testing - so if you’ve got some positives and have symptoms it might well be worth bringing up with a GP.

I guess I just reached a point where I realised it would be easy to get overwhelmed and I’d just never do anything at all! Although it’s important to remember that it is still a really stressful thing to cope with and sometimes you do need to give yourself time to feel a bit down about it all and process things properly 😊

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Hi Steph, sorry to hear you've not been well.

Your story does sound very similar to mine, the details are of course different, but the whole 'asthma since before you can remember, very well controlled (up till 9 months ago I could cycle 100 miles with no need for inhaler) but recently escalated quickly' is exactly what I have had.

I hope this doesn't offend, and it is genuinely not meant to as I know how it feels when I was told it likely wasn't my asthma, but have you been asked about anxiety? Specifically I was diagnosed with a breathing function disorder or sometimes known as hyperventilation syndrome. I got a little tight back in December and didn't cope with it very well mentally as I wasn't used to the feeling and was over breathing to compensate. My resp consultant at the hospital tells me that it is very common with asthmatics. It has taken me all of 6 months to finally come to terms with this being the likely cause of my problems as all my tests have come back fine and with multiple trips to A&E no doctors have found anything specifically wrong with me.

I don't want to give any specific advice as that is the last thing you need to be told different things by different people, rely on the doctors who are qualified to help you, but maybe look up hyperventilation syndrome yourself and see if you think there is a chance it fits with your situation.

As I say I hope you don't mind me suggesting this, but reading your post reminded me of the situation I found myself in a few months ago with the usual asthma treatment not working for me. My peak flow has always been around 600 and lung function tests are all good. As I say it has taken me a while to accept it could be the over breathing, but if it was the case for you it may mean it is something that you can take control of.

There is an anxiety element that ties in with this, it has taken me a long time to come to terms with this in my own mind as I am a very easy going person, but I have always had minor health anxiety all through my life which is also an element of over breathing.

Of course this may well not be the case for you, but couldn't help mentioning it on the off chance that it helps you.

Take care. Craig.

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Hi Craig,

I’m not easily offended so don’t worry! I have anxiety, I don’t need a doctor to tell me that but I don’t think that is what set this off, saying that, I think I will ask the doctor to be tested for asthma again as I literally have no recollection of when I was diagnosed.

I’ve just been reading your posts and wondering how you’re doing now? I’d love to know how over breathing can be corrected

Thanks,

Steph

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Hi Steph

I'm still struggling with it to be honest. When people think of hyperventilation we often think of breathing really shallow and fast. But it doesn't have to be that, it can also be described as air hunger or breathing deeper than needed.

I am seeing a physiotherapist who specialises in breathing disorders, she is teaching me some fairly basic breathing exercises to basically get it back under control, but it is hard work. I have days where I am doing better and feel in control and others where I struggle. It is basically breathing with your diaphragm rather than your upper chest, in through the nose and out through pursed lips nice and slowly.

The breathing exercises can only be useful even if it is asthma causing your problems from what I've been told.

One link that describes things quite well, also just google hyperventilation syndrome.

rbphd.com/Docs/breathingret...

Hope you get some relief soon.

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Hi Craig,

Thanks for sending me that link, I read through it all and it was really interesting and nice to have a bit more insight about it. I literally had no idea that breathing too much was a thing until today!

I’m sorry that things haven’t returned to normal for you yet, I hope you’re managing to stay positive. I feel like I’ve only realised today that I just need to have a bit of patience with myself and that getting back to 100% may take a bit of time, but I won’t give up until I get there. I wish you the strength and patience to fight your condition too :)

Steph

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I can vouch for the breathing exercises too! I had a big problem with hyperventilation syndrome a couple of years ago and the breathing exercises really helped with that side of things - it also really helps me stay calm when I have an attack.

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Hi Steph, sorry to hear you're going through this - it sounds like me! I'm 27 and have had pretty mild asthma since childhood. It got worse a few years ago but has been well contolled with inhalers and tablets. On 24 May it suddenly worsened for no discernible reason and I've had a tight/heavy/breathless chest 24/7 since then. I had a 10 day course of oral steroids and they haven't done anything. My Fostair has now been increased to a higher dosage and I'm really hoping that works because I'm struggling to do anything other than rest in bed. I've been signed off work and it's affecting my appetite. I take a daily antihistamine and montelukast too. I've been referred to a specialist so fingers crossed for that and I'm going to ask for allergy testing too!

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I’m so sorry to hear that, I hate that so many are in this situation where it seems like a never ending trial of different medications. I really hope that you can recover soon, got my fingers crossed 🤞🏻

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Lots of good advice here! Just wondering, have you also requested referral to consultants? Hope you find the right treatments soon. Take care.

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