bronchodilator reversibility test

[LottieB36]

Hi - I’ve posted before about having weird asthma! My consultant wants me now to do a bronchodilator reversibility test “to prove” my diagnosis before putting me forward for tezepelumab. My spirometry is always normal - I think the lowest it’s been is 85% but always on high dose inhalers and nebs. What happens if they say you don’t have a good enough response to the medication? I’ve been diagnosed with severe asthma since 2015 and now saying previous tests inconclusive

[Homely2 Administrator]

I would look up the eligibility criteria for teze. This should give you an idea of why your consultant feels he needs additional evidence of your asthma.

I presume there is a bureaucratic procedure that your consultant has to tick through to get teze for you.

The interesting question for me, is how do you prove asthma in someone on very heavy medication that suppresses your bio markers.

I would have a chat with the asthma UK helpline not only on the reversibility test but also on the general issue of how do you prove asthma in your position. This will give you ideas to discuss with your consultant.

[LottieB36 in reply to Homely2]

According to nice to qualify you need x3 excaberations or on permanent prednisolone, I've even had a confirmation email from them that you don't need to have a positive Bronchial Reversibility test and that they won't be changing the guidance. I agree in that it's a tick box exercise for the MDT meeting. In my mind due to all the meds I take, how can they "prove" my diagnosis! Surely a bronchial reversibility test will be negative with the meds I take, the same as spirometry is normal and FeNO. When they booked the test they said not to take Seretide for 12 hours, ipatropium for 6 hours and salbutamol for 4 hours, then said but if you can't manage just take them! They try to step down my meds and I have to step back up again due to becoming symptomatic. I was on semi permanent pred last year between April to September, then from October to mid December due to covid and a chest infection. I've had blood eosinophils of 200 whilst on 40mg pred which we know surpresses them, positive IgE and positive IgE for specific allergens. I just feel as though they constantly dismiss my symptoms. I've had a telephone consultation with my consultant, and tried to get another appointment but keep being told he won't see me until I've done this test! He asked if I could give him any peak flow readings, so I've given him a record of the last 12 months of peak flow readings which shows some readings that have >20% variability. They're obsessed with eosinophilic asthma, and seem to forget that there are other types. I'm supposed to have the test on Monday, but I'm thinking I should delay it, I've had 3 attacks this week and been able to manage at home. My GP is going to refer me to Wythenshaw, but we were waiting for the outcome from the MDT and this test, as we're concerned about how they'll treat me when they find out!

[Lysistrata Administrator Community Ambassador in reply to LottieB36]

Ugh this is really frustrating for you! My lot are obsessed with eosinophilic asthma too and it's infuriating. Especially as it actually seems like you might have markers of that if you can get those eosinophils on pred, plus you also have markers of allergic asthma.

Can you ask your GP to be referred to Wythenshawe now instead of waiting for the test with this consultant? It sounds like the team you're with has really fixed ideas (my lot are similar) and are looking for excuses not to give you the bio, given you already meet the criteria and they're adding requirements which NICE don't even need.

I totally understand the concern about Wythenshawe and what they may think, but I'm wondering if you and your GP can send them all the data now which show you meet the criteria without doing the reversibility test? They may be a bit less stubborn and agree that you don't need to prove anything else. I appreciate that may be more of a wait but it doesn't sound like your current lot are actually going to be any quicker.

[LottieB36 in reply to Lysistrata]

Thank you, I always value your advice - I’ve got an appointment with my GP next week, so I’ll cancel the test on Monday and ask for my referral - we’ve been putting it off for quite a while now, but I get nothing from them anyway, not had a face to face appointment since 2019! This is the same team who wanted me off all my meds last year, then said the letter was an error! They requested the ige blood tests, but didn’t follow them up, I only know the results because I had a copy of my records, so I’m inclined to think the same. I’ve already spoken to Wythenshaw and they’ve said it’ll be about a 4 month wait, and they said if I can send them copies of my test results etc once they’ve had the referral then that will save them some time. Thanks again 😊

[Lysistrata Administrator Community Ambassador in reply to LottieB36]

Glad it was helpful! Yes it sounds from what you say like your current lot aren't really contributing anything especially useful and it also sounds very stressful with the threat of coming off meds.

If I didn't know you must be in a different area from me because of Wythenshawe, I'd wonder if you were seeing my lot currently 😂🤦🤦 shame there's more than one team like that.

Tbf mine did get me off pred and get me home nebs but most of the time they're just obsessed with eosinophils and FENO and my problems are never asthma because I don't have that type of asthma. I haven't seen them in person for ages either but they honestly don't do anything useful when I do (they keep urging me to come in when I'm ill...what to get FENO done and be told patronisingly that I am fine and 'just unfit'??)

I really hope Wythenshawe are much more helpful for you and the wait isn't too long. It sounds encouraging that they want to speed up the process as far as possible and hopefully will take on board all the results you have showing asthma.

[LottieB36 in reply to Lysistrata]

That’s something else they say to me as well - you’re unfit, you need to exercise more! I’ve had results of latest blood test and eosinophil have risen to 300 now. I’m really worried they’re going to focus on spirometry being normal, FEV1/FVC ratio was 83% but was on pred at the time plus normal FeNO. They won’t accept the last 12 months peak flow readings that show variability, when they’ve tried to step down my inhaler, they always have to increase again. I don’t understand how they can go from diagnosing me to saying all tests inconclusive, when they’re just referring to spirometry and FeNO - and we’re not all average either are we! I find that frustrating as my peak flow has always been higher than predicted 🙈 The X-rays and CT scan reports that mention airway thickening and vascular markings consistent with history of asthma have been dismissed too, consultant said could be due to infection or post infection. There are also blood gases that show hypoxia and I’ve got documented wheeze. Sorry for the moan! I don’t think they realise how they make us feel when they go down this road, I just feel like they just think all my symptoms are in my head.

[Lysistrata Administrator Community Ambassador in reply to LottieB36]

I totally get it! You sound very much like me, apart from you have eosinophils and allergies documented (and they still don't listen?) I also don't wheeze much, only really when I'm coming out of a bad attack. My party trick is quiet chest which is not a good sign but doesn't seem to count for clinic. My peak flow is way better than predicted (I played the oboe for years which I think helped that) and I suspect my spirometry best is too as previously I've got more than predicted. As you say we aren't all average, and I don't think they understand what an average actually is...

I also have previously documented bad ABGs on more than one occasion but they were ignored. My current hospital where he sees the results have an annoying habit of only doing ABGs after treatment when it probably looks fine. I don't like ABGs of course but I don't quite understand the point when they didn't do one to start with as how can they compare?? I do have VBG evidence too but it gets ignored. My consultant is only interested in objective markers which prove his point.

Have had a CT but don't know what it shows as they never told me and I don't dare ask as they'll say I'm anxious. But what you describe is what I've heard is consistent with asthma.

Yours (like mine) have an excuse/explanation for everything it sounds like. I don't know why it makes sense to them to explain everything away as something else when it is consistent with asthma and surely that makes more sense as an explanation, instead of coming up with a different one for everything? I do find 'it's an infection not asthma' is common even though those trigger asthma for most people. My particular 'favourite' was being told my asthma was controlled and it was completely normal to end up in resus with a cold. Silly me forgot that everyone needs hospital for colds.

Re the unfitness - I am not claiming to be super fit but I literally find that I can walk fine, I have a trigger and I'm slow and struggling and short of breath and when it's resolved I can walk fine. No one gets fit or unfit that quickly! And my exercise tolerance is way better if I stay on montelukast along with the rest. My consultant wanted to do an exercise test a few years back, I think because I mentioned struggling to walk shortly after an attack. 🤦 Yeah I don't think an exercise test on a random day is going to show anything about that.

Sorry now I'm ranting too but I absolutely 100% understand the frustration. I think you're better off just cutting ties.with these guys as far as possible and crossing fingers Wythenshawe have more sense. I do know someone who had drs like yours for ages but finally found a sensible lot (Birmingham in her case, she's never been to Wythenshawe).

[LottieB36]

it’s like banging your head against a brick wall! I had an exercise test when I was first referred to them, and that was normal surprise surprise - but I used to run 25+ miles a week, go to the gym and did half marathons so I didn’t expect any different! You’d think they’d be able to personalise these tests rather than still going off the average! Birmingham is close to me too, but I know they have connections with the hospital I’m at now, so a bit reluctant to go there which is why I chose Wythenshawe.

[Lysistrata Administrator Community Ambassador in reply to LottieB36]

The one that gets me is the lack of understanding that Asthma. Is. VARIABLE!!! You would expect a tertiary centre to understand that, it's in the definition of asthma. They say they do but it seems like yours and mine don't in reality grasp that someone with even severe asthma might be fine on a random day when they see you, or after medication.

I had it on every letter that I had normal spirometry during acute attack so he doubted I needed the admission. Except 'during acute attack' was post treatment at the end of the hospital stay when I felt great and was ready to go home. 🤦🤦 He actually asked me in the next clinic appt how I felt at the time of the test, I told him all this ie post treatment etc and he still wrote in the letter that it was during an acute attack etc.

Somehow that 100% predicted made it onto every letter but what was never included was the time after when I felt fine and randomly got 65% predicted. With perfect technique so he couldn't do the usual 'it was just dysfunctional breathing'. (I do actually find it harder to do spirometry properly when I'm symptomatic which seems to be common, but I wasn't symptomatic, just worse than I felt.)

Totally get the wariness in avoiding anyone connected to your current lot.

[Pipsqueak77]

Hi LottieB36

Sorry that you are having problems with your hospital team. I think we all have to ‘shop around’ a bit before we settle with a good one! 😊

Playing devils advocate a little here so no offence meant… aren’t any new hospital also likely ask for a reversibility test too?

I have a secondary and tertiary hospital but they both like me to occasionally do this test - it seems that it’s quite popular and useful for them?🤷‍♂️

It still appears to work for me, even tho I take a load of asthma meds.. including a bio.

So maybe give it a try - it might be ok and then you can get straight on with your bio instead of having to wait and go to the back of the queue in another hospital.

Just a thought🤷‍♂️

Hope things are sorted for you though, whatever you decide to do.

👍😊

[LottieB36]

Hi, thanks for taking the time to reply and don’t worry, I’m not offended! I’ve had lots of issues with the team I’m currently under who are secondary anyway and we’ve been putting off a referral for easily 2 years! I think I’ve got to the point where I’ve lost faith in them, I feel like they aren’t interested/don’t care and feel like they’re making it harder to access biologics by not following the NICE guidance. I had Covid, then a chest infection and I asked for a review and they said it wasn’t necessary even though I was struggling. The nurses never ring back, last time I rang I was told we don’t know what to do with you so haven’t rung you back! They’ve got my meds listed incorrectly even though they’ve gone through them with me, there’s no record of any phone calls that have resulted in medication changes, and lots of other errors including test results not followed up 🙈 It’s not so much doing the reversibility that bothers me, they’ve said if I can’t go without my meds to take them, but the fact that after 9 years they suddenly need to prove my diagnosis, but didn’t when they treated me with high dose pred for 2 1/2 years! We all know there isn’t one test that’s gold standard to diagnose asthma and it’s a clinical diagnosis based on symptoms, history, response to treatment and results of tests etc - I can prove reversibility with peak flow monitoring at home, just never seem to do it with spirometry. I’ve never shown the bio markers in blood tests, but they’re showing now and this is the time of year where I’m not too bad if I can avoid picking up a cold or a chest infection. I doubt I’ll have positive FeNO due to inhalers, nebs and nasal drops. I’m just worried what they’ll be like if it’s negative. I’ve had FEV1/FVC ratio down to 83% when I’m struggling in the summer but that’s on maximum meds and then it can be 111% when I’m having a good spell, but this will be the first time they’ve done reversibility.