Hi, I'm 18 and have severe asthma, I've been in and out of hospital with asthma attacks for a year and half now. I've recently been commenced on Tezspire and have had 2 doses so far. I had a flare up just 2 weeks after my first dose and currently having one just 1 week after my second. I am on high dose trimbow and fexofenadine. I can't take montelukast as it caused severe insomnia. I have a severe chronic cough which is usually dry along with chest tightness and a whistling sound and the end of my breaths. But doctors say my chest is clear at times. My peak flow doesn't drop severely my best is 460 and is usually 400 on a good day. Right now it varies during the day from 380 to 290is this normal I've had asthma since I was 3 but I'm not sure. My oxygen has remained normal throughout thankfully but my heart rate varies and ca n go as high as 180 especially when I'm coughing. The cough keeps me up at night as well and it's difficult to sleep as I have insomnia as well. I also have pain in my ribs chest and back area, I tried using a hot water bottle but it only gives temporary relief. Any tips or experiences would be great.
Flare ups while on Tezspire - Asthma Community ...
Flare ups while on Tezspire
Do u have salbutamol as yr reliever?if Yr flareups r triggeredby viral infections its worth taking measures to reduce exposure - antiviral sprays,hand gels,masks. Wheat packs that u heat in microwave are good, also paracetamol is gd for pain.its gd that chests clear= no infection and that 02 is gd.theres lots of advice re asthma on aluk website.u may find ' controlled pursed lips breathing technique ' useful.i do whenever I'm struggling,it keeps airflow and helps u relax too.its got me through some very bad events,as I try to avoid hospitals,a+e in particular,due to virulent viruses.i find gargling water as far back as I can helps to relax throat+ Airways,and a tspn of clear honey coats+ sooths throat too,when asthma cough,tightness etc is irritating.
Sorry to jump in as I appreciate you're being helpful Patk1, but oxygen sats being good and chest clear doesn't mean asthma and/or infection isn't the problem. It's possible to have either with good sats and a clear chest, and asthmatics shouldn't rely on O2 sats being good if they're struggling as they won't always drop (for anyone wondering about this, see here: healthunlocked.com/asthmalu...
okkjh, some people with asthma, even severe asthma, do just find their peak flow doesn't really match up with their asthma symptoms whereas others do - I'm someone who finds it doesn't too. My best is much higher than predicted but I can be having a severe attack and it will still be in yellow zone! It does sound like yours is dropping more than is normal for you though and that's something to keep an eye on even if the numbers don't look bad.
With that and the cough it does seem like your asthma isn't happy at the moment, whether that's due to infection or something else. The heart rate may also be related - asthma by itself can increase your heart rate even without medication, which isn't always well understood even though it's in guidelines. Some people can find their heart rate drops after they've been appropriately treated for asthma, even with Ventolin.
180 is very high though which really isn't great. Mine gets high during flares but rarely that high unless it's a bad one (obviously people are different but 180 is still really high!!)
It may be that it would be worse without the Tezspire or that you're still waiting for the Tezspire to get to its most effective point. Do you have a contact for your asthma team who gave you the Tezspire? If your asthma team isn't available or doesn't get back to you or help asap today then please call your GP or 111, or 999/A&E if you're really struggling. You may not need admission but it sounds like you need to be seen by someone.
The exercises Patk1 mentioned may be helpful, it's worth a go but please do also get some medical attention okkjh, as those alone aren't going to be the whole answer here. Even with risk of infection in hospital or out of hours, please don't try to ride this one out at home with breathing exercises (or anyone else either unless you are in contact with a medical team who know what you're doing, are ok with it and are keeping an eye on you.)
I'm speaking as someone who shielded and needed admissions during 2020 in the height of COVID. It wasn't ideal and was concerning to do but it was still safer than trying to deal with an asthma attack at home.
If you've not got anywhere (or even if you have), you may want to give the nurses on the helpline a call once they're back on Thursday - 0300 2225800 Monday-Friday 0915-5pm (Thurs-Fri this week). They can chat through things with you.
As a severe asthmatic myself, it is gd to have normal 02 to feed our lungs+ organs, as are clear sounding lungs.of course it's not the whole picture.relaxed controlled breathing has helped me through severe airway collapses ie >90% on normal breathing both in+ out,with asthma bad at same time.been life saving on numerous occasions for less when unable to pick phone up or speak to access help.This person asked for tips + experiences and has dtated how theyve accessed medical help so knows those pathways well. without sharing,the hu forum would cease to be as helpful as it is.
Tips and personal experiences are helpful, but as I've posted elsewhere, they also need to be shared with caution. There's plenty of safe support and help on here which is useful but all users also need to think about how something might be read vs what you intended.
I do agree okkjh probably is more experienced than some others given they've had several admissions, but on the other hand, they don't necessarily know everything about what they should do/not do when unwell. The forum is also public, so posts can be read by anyone with any level of experience with asthma.
The community guidelines do ask for caution when posting your own experiences: healthunlocked.com/asthmalu...
Be aware that protocols for managing asthma and dealing with acute exacerbations may vary vastly, particularly at the severe end of the spectrum- if your protocol is unusual, please exercise caution and judgement in posting about it to avoid giving others the impression that it is safe for them to behave in a similar way.
I appreciate you have severe asthma yourself and I also appreciate you weren't directly advising anyone to do what works for you or to avoid getting care.
But given you have more experience of asthma than many, talking about your use of breathing exercises followed by your reasons for wanting to avoid hospital where possible could still be read by some people as if they should use these exercises to avoid hospital because they might catch something.
I didn't think you were telling people that at all, but I've seen people get totally the wrong end of the stick with this kind of thing - which is why I keep on about being careful with sharing experiences.
Similarly, I shared the O2 sats advice because it's a tricky area in asthma, and ALUK advise it's not something to rely on for most people with asthma when they're deciding whether or not to get help. Not even all healthcare professionals are aware of the nuances of O2 sats in asthma either, so people can get a confusing message from their doctors about how to use O2 sats. I shared the link above not just for the original advice from ALUK, but also from the discussion on that which I thought might be helpful for anyone reading this.
Ditto clear chest which a lot of people find is tricky and confusing as it doesn't necessarily mean no asthma or no infection. Way too many healthcare professionals in the UK rely too much on hearing noises in someone's chest or not, and not considering other factors. Or they just have varying skill at actually picking up noises/don't listen properly/can't tell the difference between clear and reduced air entry.
Thank you for your answer. It gives me a bit of comfort to know that peak flows and wheeze aren't always the answer to everything asthma. During my attacks sometimes I was severely wheezy but others I wasn't and felt I wasn't taken seriously enough. I also feel I start breathing fast and the nurses tell me to stop panicking and I don't as I'm fairly used to the hospital environment despite some bad experiences. I feel they just see a young teenage girl and think mental health. I had 1 doctor telling me I had an ENT issue and jt had nothing to do with asthma even after reading my whole history. She gave me a referral and I don't have an ENT issues. The cough is worse at night but the chest tightness and heaviness is bothering me alot during the day. I would like to avoid going to A&E so I'm trying my best to manage.
I appreciate not wanting to go to A&E, but please don't struggle on too long with that heart rate especially! 111 might be a good start and could stop you needing A&E later? (I completely get where you're coming from -10 years ago today I was starting to realise I'd be spending my NYE in A&E. it was me and loads of very ill drunk people and a doctor who wanted me to wheeze to prove I had asthma. I still needed to go though.)
Wheezing some of the time can be even worse than never wheezing as then they judge by that - I've a friend with severe asthma in the same position, she can't even say she never wheezes so they often assume if she's not wheezing she must be ok, rather than understanding it varies.
You may already know this but fast breathing is part of an asthma attack - it's in the guidelines along with fast heart rate. Unfortunately it feels like that's often misinterpreted as hyperventilation and panic. I had my first admissions aged 27 and I've also had the 'young woman with anxiety' stuff - doesn't help you but you're not alone sadly!
Your story sounds a bit too familiar - wish it didn't! But please do get help if you need it, even though I know it's never fun to deal with all the unknowns and feeling like you have to prove you need it.
Yes I normally use my salbutamole 3 to 4 times a week and right now I'm taking 6 puffs every 4 hours. I pick up infections really easily but I don't think I have 1 now. I've experienced severe asthma attacks before with no infection or viral. I tried paracetamol but I use it for loads if different pain and I feel like the effect has reduced and I'm allergic to NSAIDs so kinda stuck for options. I haven't seen a dr yet as I was unable to get an appointment with my usual GP as when I see another I usually end up diagnosing myself, they just say you probably know more than we do. My chest tightness is starting to get worse and peak flows around 300. I started my emergency pred pack this morning as well but I don't think it's helping and Guy's asthma helpline is closed till the 2nd. Currently considering a trip to A&E if I don't feel better
You know best especially if meds and coping strategies arent helping.thats a big drop in pf too.perhaps ring 111,who will point u in best direction to see dr or send an ambulance.ru using a spacer with yr salbutamol
Early this morning I had an asthma attack so I ended up in A&E. After a couple of nebulisers I feel much better. I get very confused though when doctors listen to my chest. When I initially went into hospital the dr said my chest was clear and just gave me some saline nebs. Then later I was still having difficulty breathing and I got a new dr as you know how a&e works. He said I had a patch of crackles on my right side and some wheeze and gave me some salbutamol and ipratomium nebs and antibiotics. After a couple of hours he came back and said my chest was now clear and I was feeling much better. They also put me on a potassium drip as I had low potassium but I'm not sure what caused this. I'm feeling better now and resting at home. Tomorrow I will call the guys asthma helpline when it reopens and hope. Don't get worse before then.
I have been on tezspire I have just had 14th jab I also have severe tracheabroncomalacia nd many other illnesses but I have found over the year found 50% drop I attacks infection and hospital admissions Have you tried any other biological injection therapy or is this your 1st one I can not have the others.types due to not being able.to reduce.or come off steroids as my.adrenal gland will not wake up
Are you still having monthly follow up appointments after the jab I would speak to them about you're concerns but my advice is that it's early days try and stick with it but if you feel it's not working speak to your consultant as you have to live with this with condition have you ever had a broncoscopy done I found that helped me to get a rare disease diagnosed maybe have a good chat with your team and see what they say good luck I hope things improve for you this time of year is hard enough with flu and viruses etc I hope things get better x
This is my first biologic so I'm hoping it works. I call the guys asthma helpline when I have a flare up, but it's not like regular follow ups. I am also going to the hospital for each injection as I can't bring myself to self administer. I haven't had a bronchoscopy but I had a ct scan which was normal.
hi okkjh. I stared Tezspire less than a year ago and I just wanted to say that in my case I noticed an improvement after about 5-6 months so it could be the case that it's still bedding in. Last winter I was very unwell with multiple respiratory infections and narrowly avoided an admission. This year I still picked up a respiratory infection but nothing like as unwell as I was last year and I'm recovering more quickly. Like you, for me the thought of having to go to hospital at this time of year is a frightening one. I also am a magnet for every air born bug possible and I noticed when I was properly shielding that I was well. Please don't sit this out on your own though, phone 111 for help or 999 if you feel things are going downhill or not improving. Be honest with yourself about this though. It doesn't mean that you will be admitted but the doctor may increase or add to your existing medication while monitoring your progress at home. Is there anyone else with you or are you on your own?
Thank you for sharing, I am trying to push through and believe in the tezspire I've had 2 exacerbation and 2 doses of the teze so you can see why I'm starting to lose hope. I will give it time though. I did end up in A&e if u have a look at my later reply. I'm currently on high dose trimbow and I don't think there's anything higher than that. Are there any other options for medication, I was under the impression that I only had trimbow and tezspire as my only options. I live with my family thankfully, I didn't think it woukd be a good idea to move out for university given my asthma is still not controlled.
I know you weren't asking me but there are other options. It looked like montelukast wasn't a good option but even if Tezspire eventually does kick in, it's worth asking about what you can do meanwhile (though depends on consultant buy-in. I'm familiar with your clinic and I'm not mentioning any names but some people there have very fixed ideas about 'good' and 'bad' medications vs what works for the individual.)
I saw you're going to call the ALUK nurses tomorrow - you could ask them about your options and how to approach the conversation, as I generally find them quite practical. And perhaps how long to give Tezspire to see how it goes.
Even though you're on a biologic in tertiary care, the conversation isn't over if what you're on isn't working for you, so it's still worth asking what you can do and how to discuss it.
What are your eosinophil levels like? If they're over a certain level (usually 0.3, also sometimes written as 300 depending on the unit), there are other biologics you could try if Tezspire doesn't work.
I'll bring it up with the nurses, but I'm also not very keen on stronger medications as I'm 18 so I just about fit the requirements like on inhalers I get very shaky even on the trimbow. Of course I know the alternative is worse but I'm just stuck to be honest. I've had around 15 courses of steroid and alot of my blood tests were done either on r just after a course of pred so alot of my blood tests were normal. When I joined the guys clinic they did tests without me being on steroids and my eosinophil was around 0.44 and igE is 1700. I don't know if it might be too early to change injections.
It might be a bit early now to change as Tezspire could still start to work, but you could ask the nurses how long to give it. I was just thinking ahead to if you don't see an improvement, so you know there are other options. Some consultants have very strong views on what they think is the 'best' medication, which isn't always what works for the patient. (Guys hate that I am on theophylline but it works for me. They didn't start it and they never would have, it was a previous consultant, but I have to argue to keep it.)
It may also be that different rather than stronger medications are an option. Not everyone gets on with every medication and Trimbow is a triple inhaler so everything is bundled together. I can't advise of course and I know you're not asking me to, but you could ask the helpline if it's worth asking about whether it has to be Trimbow or whether something else could be tried that includes those same three types of medication?
I've seen on here for example that some people just don't get on with Fostair (which is 2 out of 3 of the Trimbow drugs), whereas it works well for me.
Sometimes people get on better with the dry powder vs the aerosol spray version, or vice versa, as they can find one type is easier for them to take, or they find the propellant is an issue for them. I take Spiriva as Respimat which is a soft mist (different from pressurised aerosol MDIs), but the Handihaler version of Spiriva never worked for me.
I'm not sure which type of Trimbow you're taking, pressurised MDI or Nexthaler powder - worth trying the other type? Or, very basic advice, use a spacer if you have pMDI and you aren't using one?
Guys will probably be reviewing at certain points too - you could ask them what the options are if Tezspire doesn't work, at your next review.
I am glad you are full of hope and feel positive about the Tezspire because I can empathise. I can say that I felt just like you last winter. I had just started Tezspire and had the worst winter I'd had for years. I ended up having 5 rounds of antibiotics, three different kinds and three rounds of prednisolone, two short and one long course. I narrowly avoided admission. I was hopeful for the Tezspire but I felt despondent too. After a few more Tezspire injections and summer arriving, things were so much better. I felt better than I had for a very long time. However, before Christmas I came down with a respiratory infection again though I am not as unwell as I was last winter and I am recovering much more quickly. I didn't become as ill and I'm just finishing one longer course of antibiotics and same with prednisolone. I am not on the same inhalers as you so I can't comment but what I would definitely say is that if you are not improving or feel you are sinking, do not hesitate for a second to phone for help again. If you are not sure then a also call for medical help. You are will not be calling unnecessarily. I am glad you are living at home and have family on hand. Very wise to live at home at the moment. What are you studying?
Thank you for sharing your experience, it's good to have an idea of other people's response to tezspire. I did end up having an attack and went to hospital if you see my later reply. I feel better now and I'm trying to rest and recover. I'm studying mechanical engineer.
I did see your reply. I'm glad you are home and recovering. What I meant was not to hesitate if you need to call for help again. I left it far too long last year and that was stupid but I convinced myself that the medication would kick in if I gave it a bit more time. Good subject to study btw! Best wishes to you. Keep us posted 😊.
I note that you say you can’t take Montelukast because it causes insomnia yet you still seem to be suffering from insomnia - so was the Montelukast the actual cause of the insomnia? I take Montelukast but I also am an insomniac so apart from taking magnesium bisglycinate to help me sleep - sleep has improved since I started taking that - I can’t comment on the insomniac effect of Montelukast. Other drugs can also cause insomnia, try talking to your medics about it. As for the cough, perhaps you could try a steroid nasal spray like Flixonase to stop a possible post nasal drip that could be causing the cough - my daughter had a really irritating cough (she’s not asthmatic) and her GP gave her a course of antibiotics in case there was an infection and the Flixonase nasal spray to dry up the drip, it worked for her. I’d also recommend a short term tonic like Ferroglobin Plus - it really helped me shake off an ongoing chest infection that happened every time I caught a cold and which wouldn’t clear previously without antibiotics. I also find Vitamin D taken on a daily basis really boosts my immune system.
Early this morning I had an asthma attack so I ended up in A&E. After a couple of nebulisers I feel much better. I get very confused though when doctors listen to my chest. When I initially went into hospital the dr said my chest was clear and just gave me some saline nebs. Then later I was still having difficulty breathing and I got a new dr as you know how a&e works. He said I had a patch of crackles on my right side and some wheeze and gave me some salbutamol and ipratomium nebs and antibiotics. After a couple of hours he came back and said my chest was now clear and I was feeling much better. They also put me on a potassium drip as I had low potassium but I'm not sure what caused this. I'm feeling better now and resting at home. Tomorrow I will call the guys asthma helpline when it reopens and hope. Don't get worse before then.
Sorry you ended up in A&E but glad you got treatment - eventually. It is very confusing with clear chest - not least because as I said above, not all doctors are equally good at listening and some will mistake quiet for clear - which can be difficult when they're obsessed with hearing a wheeze and won't treat without one.
I've been told initially that my chest is nice and clear, had someone else listen but not say anything, got treatment, then later been told that I have a wheeze and/or that I'm less quiet than before. This is usually because when I came in I was actually not moving much air around my lungs so my chest was quiet, but that's often mistaken as clear, and then someone who thinks asthma always means wheeze will think everything is ok.
Better doctors know that quiet chest/reduced air entry needs treatment asap, or will go on the whole picture not just a wheeze. Some drs/other medics, like a paramedic I saw once, can also hear when air entry is ok but air *exit* is reduced.
Often the only time I actually wheeze is on the way 'up' when things have opened up a bit. During a bad attack a junior doctor treating me, who was lovely but had a total lack of filter so just said what he was thinking, said 'I'm happy with a wheeze in this case. A wheeze is a sound. In asthma a sound is a lot better than no sound which is what I heard the first time I listened.'
I use Olbas Oil I also have pain in my ribs chest and back area, I tried using a hot water bottle but it only gives temporary relief. Any tips or experiences would be great.
Olbas Oil triggers my asthma. Obviously works well for you, ilovesun, but just a warning for anyone reading this to be careful in case it triggers your asthma like mine.
Olbas oil triggers my asthma as well. I try and make do with just the hot water bottle but ad you said it only gives temporary relief. I saw my GP about it, he said its due to my chronic cough and how heavily I cough, he just gave me some exercises to try, so far no improvement.
Your personal pick-me-ups during asthma flare ups
Asthma flare up or something else?
Asthma Flare Up/ Chest Infection 
Asthma and dog dander with entact male dog, biologic therapy- tezspire.
