Singer with Severe/Brittle Asthma (no... - Asthma UK communi...

Asthma UK community forum

17,627 members22,019 posts

Singer with Severe/Brittle Asthma (non-allergic)

brittlesoprano profile image
brittlesoprano

Hey everyone, 24 yr old female here. I'm currently on 184/22 Relvar Ellipta and Salbutamol after trying every other inhaler available. They didn't work and made it even worse; Relvar now works but the GP says it's the strongest medication they have that works for non-allergic asthma. My triggers are: viral illness, humidity, cold weather, weather changes, exercise, sometimes anxiety... but I feel chest pressure all the time, it's like a nightmare. GP said I'll probably live with it forever. I've also started getting silent reflux.

I have always had asthma but a year ago I became sick with Covid-19 and ended up getting some lung damage. I now have severe and unpredictable asthma that is difficult to control with inhalers - GP thinks it's brittle. However I'm a singer! A classical one at that! My living relies heavily on my voice. I can still sing but the inhalers all made my voice more raspy, and due to the lung damage I sadly have a lowered breathing capacity and feel tired more easily.

Any other singers here with non-allergic severe or brittle asthma? Any advice at all? I'm at my wits end, it affects me every day. :(

Edit: Forgot to say, my ideal peak flow is 450-500 and every day I'm at 350-400 tops, usually the former. Doc said to not worry unless it goes below 300.

23 Replies

I am by no means a singer but I have several asthma.I would push to get seen by a specialist, they under asthma more than GPs and can prescribe different inhalers. I also have silent reflux and it causes issues with my asthma. My doctors have prescribed Lansprozole for it and it does help. Might be worth asking your GP about.

Also might be worth ringing the asthma UK nurses helpline. They give some really good advice.

brittlesoprano profile image
brittlesoprano in reply to KnPoa

Thank you, I will ring them tomorrow and ask for some advice. I've actually been on Lansoprazole before, took it for two months Dec-Feb this year and though it helped the reflux initially I couldn't feel a difference in the asthma. :(

Hi,

You definitely need to be referred to a consultant if you haven't been. It's bizarre the GP has decided you have severe/brittle asthma as that should come from a consultant (brittle isn't really a term they use now - it used to have 2 forms but now the use severe instead) - and even more bizarre is the GP saying that Relvar is the strongest inhaler for non-allergic asthma. Inhalers aren't necessarily for any type of asthma, they're just personal in terms of what works for each person - they contain different steroids so although there are vague bands of strength, it's not as simple as one being stronger than another.

With your peak flow, 350 out of 500 (to take your lowest to highest) is 70%, so while that's not as good as it could be, it's at the edge of what your "green zone" would be as that's usually 70% or above.

Are you only on the Relvar and salbutamol? There are plenty of other add-on treatments that your GP could get you to try.

Having had covid could be linked here though - which is another reason a referral would be useful because the consultant will be able to work out what's what and treat the different aspects appropriately. Most people who've had covid and have breathing symptoms afterwards don't actually have lung damage - that's not to say the symptoms aren't unpleasant, debilitating or (at best) really frustrating, but it's often more of a mechanism issue that's leftover, rather than actual damage. Of course if you've had scans etc that have shown lung damage then that is different!

Covid breathing issues are very often linked to breathing patterns and, while that causes symptoms that seem very similar to asthma, they don't respond well (or at all) to asthma treatments, either the long-term preventers or relievers. They do however respond really well to breathing exercises, both over time to retrain the body and at the time of having the tightness or shortness of breath symptoms. A referral to a consultant would help them work out which bits of what is going on for you are asthma and which bits might be post covid issues and then sort out meds changes if needed as well as respiratory physio. Incidentally if you do have confirmed lung damage then physio would also help with managing that I would imagine.

Ok just reread and saw your GP says you'll live with chest pressure forever. Just 🤦‍♀️. You won't - they just need to work out what is causing it (other things mimic asthma as well as breathing pattern issues so it's case of working out whether the pressure/symptoms are linked to your asthma or other things).

Are you on anything for the reflux?

I'm going to bombard you with some other links here....

This one is my "new to asthma" post. I know you're not new to it but your GP baffles me so this is what should be happening in asthma treatment/management. It has links to info on peak flow, inhalers, asthma mimics, etc. As you're not new to it, apologies if you already know it - but your GP doesn't seem to me to be helping very much!

healthunlocked.com/asthmauk...

This one is about add-on medication: healthunlocked.com/asthmauk...

This one has some breathing exercises on it. I have done many of them in the past with physio but actually found the site when I had covid and found them really useful - it was really interesting just how well the symptoms caused by covid responded to them. I found the breathing rectangle particularly good but I guess, like inhalers for asthma, it's a personal thing as to what each person finds best:

blf.org.uk/support-for-you/...

The AUK helpline might be worth a call. The nurses are really good and experienced in asthma but also in asthmatics who've also had covid - 0300 2225800 Mon-Fri, 9am-5pm.

Sorry that's really long - things definitely need looking at though and someone more specialised than your GP needs to be doing it I think!

Thank you for your detailed response!! This is great resources.

Yeah, the GP used "Brittle" to describe it, explained that it seems that my case is severe and difficult to control. I've been hospitalised twice in the last year and though I've not been examined by a respiratory specialist in person, I've had a chest x-ray which showed some covid-related lung damage, and pretty severe asthma. This was last summer.

Since then I went on every available inhaler and medication; nothing really helped. The brown inhaler was the worst for me, others were ineffective. Apart from that, only the high dose Relvar (inhaled powder) has helped me; the GP insists there's nothing else I could try and it's currently the strongest medication he can prescribe me for my type of asthma. I tried steroid tablets multiple times over 2020 and they worked, I guess, but again not 100%. It's like nothing can take me back to how it was before I got sick.

I spoke to 2 GPs who both refused me a Long Covid referral, I'm in London where there's lots of clinics but they said that there'll be nothing for me to do there as it's just physiotherapists focusing on getting people moving again. The GP and pharmacist from my practice spoke to a Respiratory Specialist on the phone on my behalf who said to keep up with the Relvar. However they won't even do a referral as they're not seeing people in person. I understand that I need to do a spirometry test and other examinations but my main GP was insistent this is impossible, and made me feel quite guilty for even asking about it.

As for the breathing exercises, they're actually breathing exercises I've done for most of my life due to being, well, an opera singer. Diaphragmatic/deep belly breathing is the first thing you learn in singing lessons. I've always done it and even during this whole process I never forgot how to breathe like in my opera training; right now it's like second nature to me after so long.

Sadly due to the lung x-ray and the fact that nothing we've tried improves my asthma, the GP is convinced it's severe/brittle asthma, and specifically said "you will likely have to deal with this type of asthma for the rest of your life, we just have to keep preventing it so you don't have to get hospitalised".

I'll try AUK helpline tomorrow - thank you for the suggestion! And for all your amazing help.

While some of it could well turn out to be the case, the GP can't possibly say that your asthma etc is any particular type - that's for a specialist to determine. Also not sure an x-ray can show severe asthma - most x-rays are often clear for asthma! Totally not saying it's not severe in your case - but the messages you're getting are weird and unhelpful!

Some areas or individual hospitals and doctors are saying tests can't be done which is frustrating and ridiculous as they are in other areas! That doesn't help you and your brick wall though.

It does sound to me like maybe the Relvar is helping (from what you've said and the fact that your peak flow isn't that far off being pretty good for you) so it's really frustrating no-one is more interested in finding tweaks that might work/make things better for you.

In a sense your GP is right that the asthma would always be there, but in asthma people aren't literally symptomatic all the time, or shouldn't be.

I think I'd investigate treating the silent reflux, at least then you can rule that out as an additional thing (if they ever deign to let you be seen!) and give the AUK nurses a call - you never know, they might suggest something that might help.

I didn't know that about the x-rays! I've never seen it myself but both the doctors at the hospital who did the x-ray for me, and my GPs who've seen it many times since, told me it shows severe asthma and that my lungs were very hyperinflated (not sure what that means - when I googled it, it came up as COPD related, but I'm only 24, not a smoker, no one in my family has it either. GP insisted this shows severe asthma and a recent infection).

I'd like to try something to add on to the Relvar - but last year I tried prednisone twice and then montelukast and the prednisone worked a little, the montelukast didn't affect my breathing but only made me a little more secure when around things like tobacco smoke or being in the tube (idk how to describe it but sometimes the tube smell can make me feel breathless. It could be just the pollution?).

Can the silent reflux be holding me back from healing my asthma, in a way? When I was on lansoprazole and omeprazole for it I didn't feel a huge difference in my asthma and they also gave me tummy ache and some other side effects. However healing silent reflux naturally is also difficult despite my best efforts.

Silent reflux can cause similar symptoms to asthma - so coughing, wheezing, tightness, heaviness, shortness of breath (symptoms will vary in individuals as with asthma symptoms and could one of, some of or all of). So it could be that the heaviness is something like that (or another asthma mimic) rather than asthma. Not all your symptoms ever but at the moment, given the Relvar helped - ie perhaps that's actually helped to control the asthma side of things but the residual feelings are actually something else).

In addition, for some people, silent reflux does actually irritate their asthma - which is possible for you as your peak flow, while not awful, isn't as good as it could be - so maybe it is affecting your be asthma. I'm just thinking out loud though, trying to find something you could try and sort of look into in case it helps.

The prednisolone is given as acute treatment, rather than an add-on - well I guess it is an add-on but a short term one.

There are other things like Spiriva that the GP could try although their insistence that certain inhalers are best for non allergic asthma may mean you're not actually being able to try something that would be the key for you - it's just not true that some are better for asthma types, it's what works for the individual. And inhalers should all be tried for a couple of months to see the impact which maybe you were able to do bit I have no confidence in your GP doing anything the most appropriate ways given the stuff they come out with/are adamant about!

I don't know about the x-rays either - googling suggests that asthma x-rays are usually normal. Maybe the hyperflation indicated it was uncontrolled/acute at the time or something?! Who knows!

It's hard enough trying to find the answers when it's not obvious, without brick walls being put in the way! A lot of people are being told no to referrals but it's better to be on a list than not - and those not seeing patients need to start doing so because other areas are managing to do this even if it's slower than normal!

Definitely push to see a specialist at a complex asthma tertiary centre as they have broader prescription options and can consider meds that a GP can't. They will also be able to establish your asthma sub type (phenotype) which will help target the right meds, which can make all the difference.Is Relval Elipta a dry powder inhaler? Unless you have an aspirin sensitivity, your voice would tolerate aerosol inhalers better.

At the moment, the NHS have set up post covid clinics, however that doesn't necessarily mean they are staffed with asthma specialists, therefore make sure you're being referred to an complex asthma specialist as they are more likely to diagnose and treat more specifically.

I have to have dry powder inhalers and they have definitely affected my voice, but I don't depend on my voice professionally. If you are a member of the Musicians Union they may have information on doctors specialising in vocal care and treatment - whether they would be available on the NHS and also asthma specialists is another matter. Vocal issues are usually categorised as ENT, and you may have to consider seeing a second specialist who will work with the first.

Thank you for your response!

Yes, it's a dry powder inhaler, so it doesn't look like the salbutamol shape, it's different.

My GP insists Respiratory Specialists aren't seeing people in person but he and the pharmacist said they spoke to one on my behalf, who said to just continue with relvar 184/22. It was quite bizarre as I told them I'm an opera singer, and mentioned being worried about side effects, and they insisted that side effects and especially those that affect your throat are very rare, and unlikely to affect me.

However I did try some aerosol inhalers - as I said in my post, sadly none worked for me. I have tried every medication my GP is allowed to prescribe and it was only the Relvar that made a difference. So I have to stick with the relvar; the question is what else can I do?

Sadly I can't afford a private service at the moment or otherwise I'd have gone to one of the private asthma and voice specialists recommended by the Musicians' Union, as you said.

Hello AllYou have my deepest sympathy as I was a singer but due to my lung conditions which are similar to yours but also I have Asbestosis which is due to my work as a retired plumber working for the family business from a very young age,{that is enough about me} I have a very good Physiotherapist who has assisted me with various breathing exercises which have helped me along with what is called a Constant Pressure Flutter Valve, with my breathing and controlled breathing which after approx. and a lot of medication 1 year on I have now started to be able to sing but have difficulty with high notes. There is in my case a light at the end of the tunnel.

Hope that things get better for you like me and we may both be able to sing again.

Keep well and Stay safe

Sorry to hear this you sound like you are having a rubbish time . TotallySympathise I’m a hospital optometrist so have to wear a mask all the time for work . I had only been back at work for 3 months when my asthma went off and my peak flow dropped to 370 when normally I can do 450-500 so pretty much like you . Had the normal course of steroids and they made no difference so had 2 more courses in a bid to get it back under control but no such luck . I could walk but needed my ventolin every walk and even simple things like hoovering would make me struggle . The Gp eventually decided that I have had long covid as the asthma still wasn’t responding and I was shattered and my ribs ached like mad . Luckily they referred me just before Christmas and I was seen at the beginning of January and the consultant added in spiriva respimat and my life has changed so much it’s magic . I am about to return to work as I have now had my second vaccine and after seeing the consultant again a few weeks ago we decided that returning to work was as safe as it was ever going to get for me now . The challenge will always be the mask for long periods of time but we will have to wait and see how that goes . The top and bottom of it is a referral to a specialist is definitely what you need my gp was at the limit of their prescribing as I was on fostair 200/6 2 puffs twice a day and ventolin . Hope they get you sorted soon x

twinkly29 profile image
twinkly29 in reply to Rlbee1974

I feel bad "liking" your reply as it feels as if I'm liking your struggles!

But I'm glad you've had good/sensible support (ie looking at various factors).

I don't know if you've had physio input for the long covid (if not the breathing exercises in my reply to brittlesoprano are good - the BLF link) but that sort of thing may well help the mask wearing side of things as it's very common for our bodies to think erm no to having nose/mouth coverings and the reaction to it is often a breathing pattern thing rather than asthma (not always but the exercises can really help).

Hi I’m sorry to hear about your struggles. I’m a Mezzo Soprano, trained at a young age, still a singer now but not professional, but I am a teacher, so still rely heavily on my voice. I have severe asthma and was referred a couple of years ago to a specialist. You need to insist on a referral. Once there they will try to identify snd treat any other comorbidities that may be triggering your asthma symptoms and work out what sub-type you have.

I was having terrible issues with my voice and was referred on from the severe asthma clinic to both ENT and Gastroenterology. ENT was for suspected Vocal Chord Dysfunction and dysfunctional breathing, gastro for acid reflux. They discovered quite severe muscle tension dysphonia snd were able to refer me in to a specialist voice clinic, there are quite a few available in the NHS, but as a previous poster has said, if you have access to a Union they may well be able to recommend someone who specialises in treating the voices of professional singers. I appreciate that this might not be an option as many in the entertainment industry have been hit hard by the pandemic, so please try for an NHS referral if this is the case. I am now almost back to full singing ability, through video meets over the last year with a vocal specialist and a local singing teacher, but I haven’t been in the classroom teaching due to shielding, so I’m keeping my fingers crossed! They also discovered a lot of inflammation around my larynx and pharynx and upped my meds for my acid reflux whilst I wait the appointment with gastro. Whilst I’m singing and talking far better, it hasn’t reduced the flair ups so I’ll be back to the severe asthma clinic to see what the next steps are soon.

As a previous poster has said, I’m a little puzzled by the response from your GP, as there are other treatments for asthma, not just inhalers that he can prescribe and over 70 different inhalers and he isn’t really in a position to ‘diagnose’ your sub-type as this involves a specialist and lung function tests etc... you shouldn’t just have to live with symptoms. Please push for a referral 😊

Thank you for your response!! Great to hear from a classical singer too.

The GP was insistent that I can't see a respiratory therapist nor get a long covid clinic referral. Absolutely bonkers - I ended up speaking to a second GP in the practice who pretty much said the same thing except he said I could possibly get the long covid referral if I call again in a couple months and say the issue still affects me daily. (They've known about this for an entire year!!!) But they also insist that the LC Clinics are just for physiotherapy. So I'm really not sure!

I tried about eight different inhalers last year that the Gp said were the most appropriate for severe non-allergic asthma; I also took tablets, so two courses of oral steroids, plus montelukast. The steroids sort of helped, but came with some side effects. Montelukast made me really immune to things like smoke but I'm not an allergic asthmatic so

He insists I have to live with these symptoms forever. Based on my lung x-ray from last summer, I had some lung damage due to covid (which was bizarre as I barely coughed when I was ill! But I was so breathless I couldn't sleep for about 4-5 days, my chest pressure was the worst it's ever been, and I couldn't leave my bed without extreme difficulty for about an entire month). But also, they could see evidence of pretty severe asthma (that's how the doctor explained it) and that my GP would be able to guide me further. Even when hospitalised I only ever saw GPs not a respiratory specialist, ever.

What are you taking for your asthma and for your acid reflux? I've been on lansoprazole and omeprazole before in the last year but both gave me some side effects like persistent tummy ache and headaches.

Hi, sorry to hear that your singing voice has been affected by asthma and Covid damage. I can empathise as I love to sing, although just for my own pleasure and my voice is also damaged, I think through inhaled steroids. I can only imagine how upsetting it is for you, when singing is your livelihood as well.

My asthma is non allergic,(probably moderate, but I have severe exacerbations which have become hard to control) my triggers are similar to yours and I also have silent reflux and post nasal drip 😖. I don’t have any answers to the asthma problems but glad you’ve found that your current medication works and you can start to recover. Have you been referred to a specialist? Also the Asthma UK nurses are really helpful and supportive if you give them a ring.

There are some things you can do for the reflux though, if you’re not doing them already. Mine is quite bad and I used to often wake up choking in the night. I’ve found it helpful to get a wedge pillow (plus pillows on top)to raise my upper half and always try to sleep on my left side, which is the best side to sleep if you have reflux. The obvious one also, is stop eating 3 or 4 hours before bed. (Sorry if you’re doing all this anyway!)

Also ‘Poobah’ recommends magnesium to help with reflux, I’m going to give it a try when I’ve finished my current round of prednisolone.

I also followed a diet for a while (although it depends how disciplined you are at cutting certain foods which are high in acid) which actually really helped at the time, but I found it really hard. I listened to a YouTube talk (I think 🤔) by an American ENT Specialist Dr Kaufman. She has a book called ‘Dropping Acid’ and that has all the foods you need to avoid for a while. Interesting if you want to look into that side of things.

Good luck 😊

Thank you so much! I will take all of these into consideration, I'm literally writing notes of everything people have suggested so I remember everything.

Did you take any medication for the reflux? What helped you most apart from the diet and the sleeping with a pillow to raise your upper body?

I have been on Lanzoprazole for years and recently have been changed onto Omeprazole, because it’s not working as well now. These meds do work, but if someone had told me years ago to look at what food/drink might be contributing to the reflux and the other things I could do as I’ve mentioned, I might have tried this first. I don’t really like being dependent on Lanzoprazole, as any drugs have potential side effects.

I would say that propping myself up, not eating late, and sleeping on my left side (google, there is science behind this) absolutely help 100%. I know if I can’t manage to do these, like when life gets in the way 😆I get bad reflux and wake up choking!

You could try making small changes and see if it’s the same for you, especially as you have youth on your side and an opportunity to turn it around and maybe prevent it getting worse 🤷🏻‍♀️. Having said that lots of people do ok on the Lanzaprole meds and it’s a personal choice - no judgement here 😊

The change in diet, did help too although I couldn’t manage it fully, on a permanent basis 🤦🏻‍♀️. I just have to be careful. It may be that there are only one or two types of food or drink that may cause a problem for you. It maybe something you have started having on more of or on a more regular basis or even are eating more at a time (eg nuts for me ... once I start on them! ) I think a lot of us have changed our eating/drinking during lockdown 😬

Here’s a list of common irritants: Chocolate, fried food, fizzy drinks, alcohol (because this is believed to relax the valve at the opening betweeen the stomach and oesophagus), citrus fruit and drinks, caffeine, high fat ‘creamy’ food, nuts, and processed meat e.g. bacon, sausage etc. and hot spices and sauces. Also surprisingly mint! Onions, garlic and tomatoes for some people, but a bit of trial and error might weed out the main culprits 😬. If you know you eat or drink a lot of things from this list that might be a place to start.

Hope this helps. 🤞

Lysistrata profile image
LysistrataCommunity Ambassador

Hi, so sorry to hear about this and how unhelpful the GPs are being about it!!

I won't repeat what others have said, but have you come across BAPAM? It sounds like your GPs don't really understand fully about being a professional singer. BAPAM is set up to treat musicians (free consultations) and they have a clinic in London and can refer on where needed.

bapam.org.uk/

I'm not a professional but saw them years ago for a mechanical issue caused by playing the cello (high level amateur) - they were willing to even though I wasn't pro because it was caused by that. I found most GPs and physios didn't understand at all about physical problems from music and didn't really identify the issue but they did, and they were able to refer me for some tests and a neurology referral on the NHS after initially seeing their GP and their physio (they wanted to rule out any serious neuro issues because I had some nerve symptoms).

I agree with calling AUK but it might be worth looking at BAPAM as well to see what they can do, if you haven't already. They also have a directory of musician-experienced specialists; I found the physio who really helped through them (though private in that case; I think they have NHS ones too).

It’s a very personal choice but I was tearing my hair out with my GP practice.

I spoke to the very friendly assistants in my local chemist. They told me which GP practice they liked best... and used. I switched GPs and have found that they have just one dodgy Doctor!!

Of course, it could be that I was very lucky. I guess we’re not always blessed with the best healthcare in London 😭😭

Hey!

Sorry you’re struggling! Just to say that doing vocal training etc definitely doesn’t necessarily prevent developing breathing pattern issues. I had years of vocal training and developed one when my asthma first became uncontrolled - when you actually work with the physios on it it’s all a lot more complicated than just diaphragmatic breathing or not. I was actually breathing too deeply (so in part probably actually caused a bit by the singing lessons!). So it’s still worth looking in to as it can really help with daily symptoms, especially things like chest pressure.

Also with hyperinflation on x ray, as far as I know that’s just one of the things you can get during an acute asthma attack. But it wouldn’t necessarily indicate anything about the day to day “severity” of it. So just shows you were definitely having problems at the time!

I think it’s definitely worth ringing the AUK helpline and speaking to them about add ons as others have suggested - because retrying montelukast, going back on reflux treatment or spiriva can all be done by your GP and might really help things! :)

Hi, Brittle Soprano, I am also a singer, but I have cough-variant asthma. I always sang Soprano I, but since taking the steroid inhalers, my voice has also gone down. I used to do High C easily, but since then, I have lost about a 5th on top. Now, even my G below that is questionable.

Needless to say, I was (and sometimes still am) really upset about that. I open my mouth and think that something is going to come out, and it doesn't. I was talking to my friend, an alto, about the situation. She looked at me quizzically and asked, "What is wrong with being an alto?" Really nothing, actually. I think that as long as we still have good tone, we have to make the best of whatever range we wind up with. As long as the asthma can be controlled, everything else will fall into place. Courage! Toi, toi, toi!

Medications like inhalers are fraught with danger for singers. Sorry I can't be terribly encouraging, I lost much control of my voice, singing in a band, and now it's really hard to control it and often will break out in a fit of coughing. All I can really stress is how important it is to rinse your mouth and throat, (gargle if possible) every time after taking inhalers. I will say I have been taking inhalers since they first came out in the late 1970's early 80's so I guess it's not surprising there is some damage. Wishing you all the best and hoping you can develop strategies to maintain control power as well as subtlety in your voice.

Hi. I am a singer as well, have been on 3 inhalers a day for years. First thing is to be sure to rinse your mouth and gargle after each inhaler use. Also good to sip hot tea immediately after.

Warming up slowly is essential as well. Have you tried singing gently through a straw as well. It really has helped my hoarseness.

My peak flow has been as low as 220 and I forced myself to keep singing through and doing that has helped me keep it slowly and steadily improving.

If the offer you biologic injections, do it! It has helped me a great deal as well.

Hope this helps.

You may also like...