Firstly I'd just like to say how great this group is and how we all support each other!!
Secondly, I'd like your opinion/thoughts please if possible?
I have been for multiple chest x rays and they have been fine. Was still feeling ill not long after and Dr's sent me for another one and then referred to chest clinic/consultant. He stated that they think i have Asthma/COPD issues. Very likely to be COPD (not definite!) they said they can't get me in at the mo for tests at mo due to backlog of people, no spirometry is available either. They say the 'pragmatic approach' would be to give me a combo inhaler (LABA included). However, I've had major side effects off all LABAs I've tried! I spoke to an Asthma nurse and she has said that this may only be Asthma related and that I may only need an ICS to tackle the inflammation which may be causing the problem!
I I feel i need a diagnosis to confirm what I have so I know which way to go, but no tests at mo!!
Is it best to ask for an ICS now due to the above issues. Could this be just asthma related and I'm being prescribed a LABA just in case it's COPD?
Has this happened to anyone else at all please? Let me know if so please?
Thanks
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Ami40
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Glad you find the group helpful, but sorry to hear you're struggling. This is a difficult position to be in as you obviously don't want to wait ages, but also I do think an actual diagnosis would be helpful to guide treatment.
Do you know why they said you have COPD? If they haven't been able to do many tests it seems a bit premature tbh, so I'm wondering if they told you what makes them think it's COPD more than asthma.
ICS can still be used for some people with COPD, but it's not recommended for everyone with it. Some people with COPD can have the same kind of inflammation that some people with asthma also have (eosinophilic inflammation, in this case measured by blood tests) and if so, ICS can help them, but if they don't have that then they shouldn't be on ICS. However, ICS is currently recommended for everyone with asthma regardless of whether they have this inflammation or not. If you do have asthma, just a LABA by itself isn't recommended as it isn't tackling inflammation at all, and it can lead to attacks. Have you told the nurse/consultant about your difficulties with LABAs?
That may not help your decision much but hope it helps to explain the situation! There are other medications you can use for COPD called LAMAs (like Atrovent and Spiriva) but I'm not sure of when they're prescribed for COPD; they are also used for asthma in some cases but usually not until ICS-LABA has been tried and isn't controlling things well enough.
I'd also recommend chatting to the AUK nurses; they are very helpful and have time to listen and explain things/talk through your options. They can be reached on 0300 2225800 M-F 9-5 or WhatsApp - 07378 606728.
The British Lung Foundation also have a helpline, though never called it myself so don't know how it compares! blf.org.uk/support-for-you
Hi thanks for your response, I'm not why they have said COPD they just said it's very likely, I will look into his more and back to you again though! Ive had blood tests all look normal, maybe a little elevated cholesterol but other than that I believe they are ok. So I'm guessing there's no eosinophilic inflammation as it will show on there? No I believe I've been given ICS and LABAs but the LABAS are what's increasing my anxiety and HR so I just can't take them! Ive tried LAMAs I.e Spiriva, sent my HR to 100 at rest! So came off that top! I have already spoken to Asthma nurse and she's the one who advised that I may just have Asthma and they are saying Asthma/COPD to cover all angles and prescribing ICS and LABAS for this reason? Was advised to try ICS on its own and monitor PF if it increases then it's more Asthma then COPD issues etc? Yes would lv a diagnosis ASAP as then I know where to go or what to do! 😉
LysistrataAdministratorCommunity Ambassador in reply to Ami40
Yes, I would ask what specifically makes them think COPD. It might be because you didn't have eosinophilic inflammation. You can have asthma without it (and as I mentioned can have COPD with it) but some medics tend to see it as asthma = inflammation, COPD = no inflammation.
Didn't realise you'd already spoken to AUK sorry -I thought you meant a nurse at your surgery. Yes monitor your peak flow; do you have a reliever inhaler (Ventolin)? Try doing your peak flow before you take that, and then 15 mins or so after. If it goes up 12-15% or more it's likely to be asthma. With asthma you're also likely to see a lot of peak flow variation, and if the ICS works that should start to level out at higher levels. You will need to give it a few weeks for the ICS to work though - usually you start to notice within 2-3 weeks but it can take up to 8 to have a full effect. (Sorry if the nurse has already said all this!)
Yes agree with this - especially the giving stuff the full time to kick in properly (not just for full effectiveness but also because side effects should diminish in this time).
Thank you your advice is priceless! I will ask why they think COPD? Yes so when I'm monitoring PF, is it best to take a reading in the afternoon before inhaler and do again once after? Then I thought we were supposed to take a reading on an evening too? But what if I dint need my inhaler then, like I said, I've just gone 3 days without it, so do I record PF anyway and then once on the day I take the blue inhaler just record it as so? So I know when I've taken it etc and what reading it is?
Hopefully I'll see a difference with blue inhaler then I can believe that's it's Asthma? Is that right, if it was COPD it would be unchanged? Is that a correct analogy?
Regarding the ICS I haven't even got one yet, please tell me these inhalers have less side effects then ICS +LABA (combo) inhalers?!
Which has been the best ICS inhaler with least amount of side effects? I need something that will not affect my anxiety the least amount!!
I've heard the side effects are more from LABAs not ICS? And was advised to go ICS route if less side effects and it may just be inflammation asthma related etc? Any particular symptoms with inflammation? How can we know that we gave it etc please?
LysistrataAdministratorCommunity Ambassador in reply to Ami40
I would do peak flow twice a day at least, morning and evening, and record it on a chart or an app on your phone (there's one called Peak Flow with a yellow icon which is free and I found it good; it also lets you note whether a recording is pre reliever or post reliever. Or you can use a paper diary. This Asthma UK page has more information and a diary you can download: asthma.org.uk/advice/manage...
This post from EmmaF91 may help with peak flow: in particular the section on tracking:
You should start doing it now so you can keep track of any differences when you start on ICS. Do it twice a day even if you don't use your reliever inhaler, but if you do find you need the reliever, also try to take a peak flow reading before and 15 mins after you do, in addition to the regular readings. If it goes up by 12-15% or more above the first reading after you take reliever then yes it is likely to be asthma.
There isn't really a 'best' ICS as people can be quite individual in what works for them. Generally the anxiety/palpitations are associated with the LABA, though as Twinkly said they may settle if you give it a bit of time. ICS do have some side effects, mostly local in your mouth, but you can generally prevent these by rinsing out your mouth after you use the ICS inhaler, or by using a spacer with it if you can (doesn't work with the dry powder kind though). This page may help: asthma.org.uk/advice/inhale...
You generally can't tell if you have inflammation necessarily. You may have more symptoms and use your reliever inhaler more -but that can happen if you have asthma without inflammation too. Some people with very inflamed airways may not notice until they have an asthma attack. Really the way to know if you have it is by testing (eg the blood test I mentioned, or a breath test called FENO).
Thank you I'm definitely going to start the PF today and see how I get on...Will make a note when using blue inhaler and will try get a reading before and after too.
I believe the consultant has stated " understand that on the consultation there were some expiratory wheeze in some part of the lung without but there were no signs of respiratory distress and he has been on no inhaler since the one he started three days ago. The possibility here is most likely COPD from the smoking history (although there's no quantification of pack year history) or some underlying asthma or both". Then mentions something about spirometry is needed but doesn't think it's important right now due to how full they are then states " The most pragmatic approach would be to give the patient something that has an LABA and ICS rather than just ICS that's just in case there's an element of COPD which by sounds of it is very likely". Then mentions he would give something like Relvar etc and assess again to see if situation better, then we got the answer and once we got the primary care back can go get a spirometry, can clarify if COPD or Asthma or both or if you struggle we can see him in the chest clinic but since has not started on inhaler yet then no need yet etc...
My question is can't you have wheeze without respiratory distress in Asthma? Do i really need a LABA as now I've tried them and causing serious side effects... Do I just follow what asthma nurse has said and do PF and just use ICS to see if that tackles it, when I was seen I was wheezing really bad but was given anti-biotics and that took most of wheezing away? Now it's just shortness of breath and can't catch breath, tired on exertion etc and occasionally a wheeze usually on a morning?
As an ex-nurse (in a different specialty) who has COPD/Asthma I would say the COPD diagnosis reveals it self over time because one of its characteristics is how things develop
This is of course v frustrating for everyone
But not unique in medicine
I agree with talking to Asthma UK nurse on the helpline very helpful also your own care team may be shy of the COPD label
Hope this helps
Take care
Hi. I really want to help you, and because i'm in the same boat as you here is what i know so far:
If you have asthma:
- symptoms will likely worsen at night
- you will usually experincing asthma attacks caused by specific triggers
- wet cough usually with copd and dry cough with asthma (usually, but this is not 100℅ the case)
- unlike copd, x-rays and a CT scan will not find anything
- corticosteroids will likely not work if you have copd and work if you have asthma
I also have your problem. I've been diagnosed with bronchial persistent asthma but my symtoms are not really asthma. My symptoms are more likely caused by ILD or emphysema (Copd) and they started when i was vaping (now has been 3 years since i quit). I hope i'm wrong and doctors are right. I'm not a doctor so these informations may not be 100℅ accurate.
Hi thanks, you say corticosteroids won't work if not asthma? When I use blue inhaler ventolin, this definitely does help my breathing... There's no cough whatsoever and no mucus really? Just pains in back and wheeze on a morning and shortness of breath on exertion of doing things? Chest feels dry all the time etc. When I wake up I feel the need to get to my window and get fresh air and then I'm ok. COPD can be found on x rays and ct scans is that right, I've had 2 chest x rays and nothing really found, maybe lungs looks a little inflamed but nothing else said... Waiting for ct scan but don't know when that will be...
Please don't say started when vaping? I started vaping when stopped smoking to help and now just do so once/twice weekly and that's it, but I don't vape nicotine at all no oils, just dry herb like valerian and chamomile etc and others like it
LysistrataAdministratorCommunity Ambassador in reply to Ami40
Just jumping in here - as per my post above, corticosteroids *can* work for COPD, that's not the best way to tell the difference. Some people with COPD have eosinophilic inflammation as determined by blood tests, and in that case ICS can help them. ICS is usually recommended for everyone with asthma as a first line preventer.
Replying to your post above - I don't think wheeze and shortness of breath are very specific to either asthma or COPD. You could certainly have a wheeze but 'no respiratory distress' with asthma (equally, you could have asthma with no wheeze at all). Asthma does tend to be more variable (you could be fine sometimes but very symptomatic at others), but equally if you're not well controlled then you might feel like you're short of breath a lot - which the blue inhaler should help with. Recording peak flow should also help you see what pattern you have as asthma is likely to be variable.
I'm wondering about the vaping though. Herbs can be a trigger for asthma (not sure about COPD), so it's possible your vaping is triggering you, either from the herbs or something else in the vape. Quite a few people with asthma find that being near other people vaping triggers them, so doing it yourself certainly could. Perhaps try stopping for a bit if you can and see if that helps?
Can't really help with the LABA, though side effects can settle down after a bit. Maybe speak to your GP about trying the ICS first.
Thank you, I don't think it's the vape triggering it as I only do that very rarely now tbh, once/twice a wk, and I suffer from these issues at the start if the week and through when.not even doing any of it? Yes, I don't know it's just a wheeze occasionally, more shortness of breath or fatigue and pains in back and ribs area. With the feeling of needing to clear lungs on the exhale, I can breathe in ok, it's just out I think?So while I'm doing my PF, if this increases after using blue inhaler (as thats not a corticosteroids) What does that mean please?
I feel really tired as we speak but I think that may be due to coming off the inhaler and late nights from the last few days... Yes I've contacted the GP to see if I can just have an ICS etc and go from there... Received a letter from hospital too... Got an appointment for full pulmonary tests in April 😉👍
Ventolin is not a corticosteroid.I say what is in my experience, vaping has ruined my lungs in a way that i still don't know right now. Maybe it is only asthma maybe not. I used to vape only legal liquids but also legal cbd oil with nicotine, just totally stop if you can.
Pains in the back is what i have in common with you but i also have alot of mucus to the point is hard to breathe. Let's keep in touch. I can say cortisteroids do not work well with me, however ibuprofen gel applied on my back is extremely effective. You may try but always ask your doctor fist. Again i'm really not an expert but for what you said you may be have asthma. Do not take this words as 100% accurate.
Yes no problem will defo keep it touch, yes pains in the middle of back either side of spine? I'm very careful not to vape any oils or nicotine as that can defo make things worse and have totally given up on cigarettes. I only vape very rarely now tbh. I've heard smoking mullein leaves helps and opens your chest for breathing? but I've not tried that yet, do you drink mullein tea or different breathe easy teas they do help and loosen mucus up too. I have an air physio and that works well with mucus I've heard others say, it definitely opens your lungs up much better and helps to breathe, that I can tell you! Yes will ask about ibuprofen gel too. I've been getting a little dizzy lately, I think it may since I've come off the combo inhaler though 😉
Pains in the middle of back either side of spine? Yes, absolutely, Both. Fluids help alot but in the very short term. Again do not smoke anything if you want to preserve your lung function and you have a respiratory disease, stop right now especially in the case they found out is COPD. Btw if you want to know my HRCT was clear.
Yes I hear you, whats HRCT? And is there anything else that helps with the back pain at all, is this likely to be Asthma related? Or COPD? Do you get the shortness of breath and feel really tired on exertion or force?
It is an high resolution CT scan.For what i hear, almost all kinds of lung diseases can cause back pain including asthma so it is not an easy answer. I get alot of additional back pain, cough and stiffness during exertion or force or when i lay down flat, i hear crackles from my lungs because of mucus build up. Ibuprofen and paracetamol do help 100℅. But be careful with ibuprofen read Lysistrata post.
LysistrataAdministratorCommunity Ambassador in reply to Ami40
Just as an FYI, be careful with ibuprofen and other NSAIDs like aspirin if you may have asthma - even used externally. This class of drugs can trigger asthma in some people. Not all, but it's worth being aware of the possibility.
Ok thank you much appreciated I heard ibuprofen can be bad so take paracetamol when needed 😉 can I ask please, if I do my PF and monitor it daily, if it increases after blue ventolin inhaler does this mean it's more likely to be Asthma related? I'm going in for a Full Pulmonary Test in April, I'm guessing this will have spirometry involved? Reversibility option is written on the enclosed form but I think I will ring them to ensure that I need that too, what exactly is the reversibility aspect for? I heard before but forgot now lol
LysistrataAdministratorCommunity Ambassador in reply to Ami40
Yes - as I've said above an increase of 12-15% from the initial number after you use reliever (wait 15 mins or so) suggests asthma. However, you should also be measuring twice a day as I mentioned above, because a lot of variability in your daily readings suggests asthma too, separately from the effect with the blue inhaler.
Lung function tests will include spirometry yes. Reversibility means they do the same test I've mentioned with the blue inhaler (do first test, give inhaler, wait 15 mins, do second test), but with spirometry instead of peak flow. Again they're looking for an increase of about 12-15% from the first result. Sometimes they say they don't need to do reversibility if the first set of results are ok, but I would push to do it anyway because some people with asthma can still get significant reversibility, even if their first result seemed 'ok'.
Also make sure you stop your medications before the test. The letter should have instructions about that. If you have your reliever within 4 hours of the test it will affect the results.
Hi I done my PF and in the morning I hit 450 and then 425, I tried again in evening and was 450. I did my blue inhaler, usually I take 1 puff only and I'm ok with that but I thought I'd do the 2 puffs and it took me a good half hr to relax due to the jitteryness and shakes which is actually normal with this, that's why I take 1 puff usally and half hr later I'm ok, any way my PF was 550 when I tried once I'd calmed down after inhaler... So according to what's been discussed, seems like asthma?
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