Tezepelumab/Spirometry with Reversibility

[LottieB36]

Hi, hope everyone is managing well. I’m just looking to hear others experiences if possible. I’m quite complex and don’t show a high FeNO and spirometry is normal and my asthma is driven by neutrophils for inflammation. Best peak flow is 440, hovering around 220-350 - 220 is pre meds in the morning, then it rises to 350 after. I react to pollen, grass, mould, animal dander, cats, long haired dogs and salicylates and alongside severe asthma I also have Addisons Disease , Sjögren’s syndrome, UCTD/SLE Lupus, severe hayfever, eczema, Menieres Disease, Inflammatory Arthritis, Fibromyalgia, recurrent chest infections, neutrophilia, urticaria, sun sensitivity and colonised with Pseudomonas, I also have low immune response to pneumococcal vaccines, and following genetic testing I am a CF carrier and need further testing to rule out the rarer types - I take lots of medication!

I had a recent review with my consultant and I’ve been struggling since June with a flare, done a sputum sample which came back clear showing normal respiratory flora, tried a short course of steroids for hayfever which helped, then a couple of weeks later, flared again so GP advised a tapering course of steroids this time and I’m now down to 15mg a day. Advised to stay on this for another week or so and if settled taper to 10mg. I’m due to start methotrexate (providing I have no infections) and advised to stay on 10mg until I start that and taper when symptoms are better.

I asked about the new biologic Tezepelumab and was told that they’ll discuss me at the next meeting, but that they had tightened up the criteria and that I would need to do spirometry with Bronchodilator Reversibility and that we’d need to stop all meds for 48 hours. I meet the criteria on the NICE website, but wondered if there are any other stipulations from the NHS.

I’ve refused to do this previously due to the amount of medication I have - seretide inhaler, budesonide nebs, salbutamol nebs, atrovent nebs, isotonic saline nebs, colomycin nebs, doxycycline, Montelukast, fexofenadene (high dose 3-4 daily), dymista nasal spray, optanol eye drops, esomeprazole and currently on 15mg of prednisolone. I always struggle to do the spirometry, I’ve seen that if you have high blood pressure, that the test is not suitable for you? I have high blood pressure and take medication, but only a low dose and it is still higher on occasions than is normal - this occurs mainly when going to hospital or GP, but when we do checks at home it’s ok. I also have PTSD from a difficult experience I had whilst having routine treatment in hospital which resulted in me having to be admitted due to an addisonian crisis because I was refused an emergency injection - I was unconscious for 3 hours and this has left me extremely anxious/suffering with panic attacks with regards to attending hospital even for routine appointments - I had a panic attack last week and was only having a CT scan on my wrist and the same happens when I have blood tests.

Sorry for the long post, I just wondered if anybody had been approved without having to do the spirometry (I will query this due to my blood pressure) - thanks 😊

[Melanie1989]

I'm under addenbrookes and been put forward for tezepulimab. I did spirometry stopping meds, but due to struggling off meds I couldn't get a usable reading, therefore didn't do reversibility. It also randomly showed restriction... With my symptoms and peak flow variability, my consultant said this was enough to take to MDT so will wait and see...

Are you under secondary or tertiary care?

[LottieB36 in reply to Melanie1989]

Secondary? I’m at Royal Stoke - I asked a number of years ago for a referral to the Brompton but they refused saying they couldn’t offer any additional treatments and it would be a waste of time.

[Melanie1989 in reply to LottieB36]

My hospital referred me to addenbrookes in case they missed anything.. I find referral for biologics carry a bit more weight from tertiary as they are much more involved. I found tertiary were much more in depth than my local. Maybe push again for a referral, it took 7 years of asking for mine!

[BlueZebra]

I’ve been approved for Tezepelumab and I’ve done spirometry in the past but didn’t have to do reversibility. When reversibility or bronchial challenge has been brought up my consultant has said it’s not a good idea for me to stop all my meds as I’d just end up really poorly.

For me pre and post exacerbation spirometry and peak flow variation were enough for them to approve me.

I hope you can find a treatment that works for you!

[annaemmalucy]

No I use Seretide but without the other drugs etc that LottieB36 is on. It works well with a spacer and I have been on it for nearly 30 years

[Lotti_321-]

I’m going through this, and been told they are tightening up on ensuring those who are put forwards for it there is evidence of reversibility. I’ve been tested repeatedly for years and always shown as ok. But this hasn’t stopped me having flare ups etc. So waiting mannitol challenge/ monitoring peak flow to try and get me put forwards for this medication

[LottieB36 in reply to Lotti_321-]

Do you have normal spirometry as well?

[Lotti_321- in reply to LottieB36]

Yes been normal, although doesn’t stop me having attacks/flares

[sciencepotato in reply to Lotti_321-]

Have you had your mannitol challenge yet?

I've just had mine and it was negative (I didn't react). So not sure what happens now in terms of getting tezspire...

[MissNyxiie]

I have been on Tezepelumab since january. I was told in november i was being put forward and in december was approved by guys hospital in london and then started it end of january, I was the 3rd person at the hospital to be put on it. I have a history of 3 years of monthly chest infections and constant issues with my asthma. I was on the higher relvar inhaler but they lowered me to the lower relvar as they think that was contributing to the infections. I also take a spiriva inhaler daily too among a whole host of other medications for other issues. I wrote a letter saying how much my asthma was affecting me at my appointment not long before i was told about the injection which I think helped. I have blood tests, feno and spirometry every appointment and I have never had a reversibility. I have always had a low feno, under 20 and my blood tests have always shown a slightly raised infection level and the sputum samples have never shown a bug to answer what the infections are. They said because there were currently no other treatments they could offer I was put forward for the injection. It has increased my peakflow slightly and my reactions to things, which became very prominent after getting covid in January 2022. Other than that, my asthma has worsened and im still getting infections monthly. I have an appointment end of next month to talk to them to see what else can be done as I have just lost my job to my asthma. I would suggest asking them what exactly needs doing to be able to be put forward, any medicine changes or maybe a stay in hospital for the test. I would make sure you tell them how your life has been affected and if your frustrated. I found it so difficult which is why i wrote a letter and I will do the same next month because im miserable and sometimes they need this information to fight for you to get better treatment. Hope it works out for you, happy to help with any information if you need it.

[LottieB36 in reply to MissNyxiie]

Would you mind helping me with any information that you think would be useful to include in a letter please? 😊

[MissNyxiie in reply to LottieB36]

I would write how it has affected your work, social life, relationship, cost of prescription and defiantly mental health. It takes a toll being ill for a long period of time and it can be really frustrating, its worth including exactly how it is negatively affecting your life. I had to keep taking time off work for appointments, working when ill because I had no choice, I have bills to pay, it put a strain on my relationship as he was always looking after me and mental health wise I have had depression on and off for years and now anxiety because im scared of what happens when i cant breathe. They actually done something because of how much it was affecting my life, I made sure every time I felt ill I phoned them and they saw me which helped my case.

[LottieB36 in reply to MissNyxiie]

Thank you - were your spirometry results normal with a low feno when tested

[MissNyxiie in reply to LottieB36]

spiro results have always been between 80 and 90%, they were slightly above 90 after starting the biologic jab but the last 2 spiros dropped a bit each time where ive been ill

[LottieB36]

thanks - sorry to hear you’re still struggling - they’ve told me they need to have a definitive asthma diagnosis which is why they’ve said they need to do reversibility. My feno is always low, spirometry is normal but my peak flow is variable by 20% when monitored daily.

Do you have normal spirometry? I’m beginning to feel as though they think it’s all in my head! Surely I wouldn’t be treated with all the meds I have if there was doubts about my diagnosis?

I’ve decided I’m going to write a letter, I don’t have eosinophilic inflammation so feno is irrelevant for me and it’s not even in the criteria for tezepelumab?

[sciencepotato]

I was approved for Tezspire despite normal spirometry and negative mannitol test. I get lots of asthma flare ups nonetheless and am allergic, having chest infection every month. Steroids and antibiotics are the only thing that helps with flare ups.

Hope you'll get your biologics too!

[LottieB36 in reply to sciencepotato]

I've finally been approved! have they tried azithromycin or doxycycline as a preventative antibiotic for you?

[sciencepotato in reply to LottieB36]

Congratulations! Have you tried the injection yet?

No, my consultant doesn't want me on regular abx.

[LottieB36 in reply to sciencepotato]

Yes, I've had 2 injections and so far avoiding steroids - I'm normally on them by now as this is the worst time of year for me!

It could be worth asking about azithromycin as this also has an anti inflammatory action and is recommended in the GINA pathway - I used to have it, but had to switch to doxycycline as it interacted with another med I have. It definitely helped with infections though, I was like you and having them every month and they reduced to 2-3 a year.

Have you had to do a sputum sample so they can see what bug you have, then they can target with the right antibiotic? I had to do this, and was found to be colonised with psuedomonas, so I have nebulised antibiotics daily which keeps them at a low level so they don't cause any infections.

[sciencepotato in reply to LottieB36]

I'm pleased, you're finding your injections working!

Like I said my consultant doesn't want me on regular abx. I know macrolides are good antiinflammatories. I get various chest infections, I always submit sputum and thus on the right abx.

[LottieB36 in reply to sciencepotato]

It is Tezspire I'm on 😊. Glad you're on the right antibiotics as some consultants don't check when you keep getting recurrent infections! Have you been referred for genetic testing? I was also referred for this last year to see if there is a reason for the repeated infections.

[sciencepotato in reply to LottieB36]

It's the gp that takes and tests my sputum. No I haven't been referred, my asthma only started two years ago and turned into severe now. I'm sure the infections are the consequence of that plus my kid bringing bugs home.

Hope teze will keep doing wonders for you x

[Patk1]

Hi LottieB36 u have such a lot going on.i have a whole list of stuff too. Im currently on fasenra but wears off for last2wks + they feel it's not as gd as it could be 4me.so I've to do that same stop meds reversibility too b4 tez is prescribed.im concerned as my asthma+ lungs are poor with medications - I can't imagine not using them.im going to try get to speak to someone b4hand.there shld surely be another way for those of us with severe asthma,at best.Re ptsd,panic,anxiety etc - no wonder aft what u were put thro with AI.take a look at every mind matters online for contact details as u can self refer.

Is yr AI under control now x

[LottieB36 in reply to Patk1]

In the end I didn't have to stop meds before doing the reversibility test, so keep telling them that you don't feel comfortable - they finally agree that I know my asthma best and if I can't manage without inhalers/nebs. I had to give them a list of what I'd taken, dose and times, so perhaps that could be an option for you? I've been approved for Tezepelumab and had 2 doses, so far and avoiding steroids whereas I would usually be on them now. AI is steady - it's just a learning curve - having to remember to updose when not feeling well, and it doesn't help that most Endocrine Consultants have an obsession with you being on the lowest possible dose, even if it affects your quality of life, and there are so many different opinions on management alongside other conditions that we need to take steroids for!

[Patk1]

Lottie I've just spoken to nurse at hospital about this and expressed my concerns.she suggests if ill,rrearrange.otherwise if can't manage without reliever in than 48 hrs,use it but stop the steroid inhaler for that 48hrs