biological not working

[Foreverbreathless]

I started a biological for my asthma 4 months ago and had a lung function test today to show that it’s reduced down to 2L 😭 I feel no different I’m very breathless I’m hospitalised all of the time with attacks normally due to viruses. Has anybody else had the same results or lack of 🫣 as my doctor was extremely surprised that they haven’t worked. 🤷🏻‍♀️ I’m 36 and can’t get up the stairs without using my salbutamol 😭

[RKC123]

What biologics are you currently taking?

[Foreverbreathless in reply to RKC123]

Benralizumab 🤷🏻‍♀️

[runcyclexcski in reply to Foreverbreathless]

Benra did not work for me, either. Xolair works better (but it's not a "miracle").

[Foreverbreathless in reply to runcyclexcski]

I’ve had 4 injections and was admitted over Xmas and I’m back in now with pneumonia 😭

[runcyclexcski in reply to Foreverbreathless]

One would think after this they will finally reconsider it... Xolair is an older mAb (the first one ever -- FDA approved it around 2007, and the first paper on it was in 1991!) Maybe they are excited to try new things before trying olders ones.

[Foreverbreathless in reply to runcyclexcski]

Most likely! They prescribed me 2 high dose steroid inhalers to be taken up to 8 times per day which I’ve been taking for years then I came in here last year to be told they’ve been issuing the wrong one so in effect I’ve been overdosing on steroid inhalers for years! I was finally given a blue inhaler to use. Then they decided on the biologic. I was just hoping to feel a difference by now but instead I’ve been admitted twice 😩

[runcyclexcski in reply to Foreverbreathless]

Was the 8-x a day steroid inhaler in combination with a LABA? The latter would have made my heart race like crazy if ODing like that on it.

[Foreverbreathless in reply to runcyclexcski]

Duo resp 320 on the MART regime but I should have been given the lower one! They made my shake like crazy but I was told to use it like a reliever so I did. To be honest I think that’s why I got approved for the biologic 😳

[runcyclexcski in reply to Foreverbreathless]

Interesting. In my case, they needed N prescriptions for oral pred per year (I believe N~4). I have heard the notion of steroid inhalers used as a reliever from some doctors. I have always used "the blue inhaler" -- sabultamol.

[Poobah]

I can understand your disappointment Foreverbreathless. But there are currently 5 biologics approved by NICE, so it may well be that another will be more suitable for you. I'm sure your consultant has identified your type of asthma in order to understand the specific inflammation pathway, which is necessary in selecting the biologic. I attach a link to more details, as this may help you discuss your case with the consultant, with a view to changing your biologic. england.nhs.uk/aac/what-we-...

Sometimes patients throw a curve ball and we just don't fit the expected picture, and doctors just have to be more willing to think outside the box and try another treatment.

[Foreverbreathless in reply to Poobah]

thank you 🙏

[RKC123]

I was on Mepolizumab which did nothing but changed to Dupilumab which significantly improved my breathlessness. Coughing continues but its a trade off.

I suffer from severe Eosinophilic Asthma.

Try and get them to change to another Biologic, although they dont like you to change but push them as another type might work for you.

[runcyclexcski in reply to RKC123]

RKC -- how long was it before you noticed an effect on Dupi? I was on it for 3 months now, and I believe Xolair worked better. I am thinking to switch me back to X (which was not a miracle, but at least it permitted me to do chores like shopping and cleaning).

[Foreverbreathless]

thank you. I suffer with the same! Apparently we are a rare breed 🤣 I’m back in two weeks and he’s looking at changing it 🤞 I ended up in hospital for a week over the Xmas after the first injection and I can’t get my peak flow above 300 (normal 400) and my oxygen above 93%. My lung function has significantly dropped from last test in September. I started the injections on 12th December. So I can’t see why not 🤞🤞

[Pipsqueak77 in reply to Foreverbreathless]

Hi Foreverbreathless

Don’t worry too much.. I have SEA and am on my second biologic, which is better but not 100%. Still having admissions!🙄

My team are looking to try a third 🤷‍♂️. It’s a bit like all the other asthma treatment, in that you might need to try several different options until you find the right one! They are great and just move me onto a different one - I’ve never had any trouble there.

So try not to worry too much.. just move onto another until you find the right fit.

Good Luck 😊👍

[Foreverbreathless in reply to Pipsqueak77]

Thank you 🙏 I’ve just been a bit deflated since having no improvement in fact a decline since starting them.

[Pipsqueak77 in reply to Foreverbreathless]

Hi

Remember it’s only one… another might be your magic bullet! 😊

Also i guess you’ve had more than one - the 3 loading dose? Because it might just be early days?

👍😊

[Foreverbreathless in reply to Pipsqueak77]

I’ve had 4 !

[Pipsqueak77 in reply to Foreverbreathless]

Hi

Yep.. stopped working for me after about 2yrs.. and I’ve now been on my second for just over a year.

Your team will have a plan..don’t be too disheartened. 😊

[Patk1]

I'm onfasenra which has helped my asthm.if Yr exacerbations are triggered by viruses, u really need to take measures to reduce risk of or avoid bugs.i carry+ use handgel,wear a mask,use coldzyme throat spray + vicks nasal spray to catch viral particles,plus use sir purifiers at home.perhaps u would see better results if u proactively reduce infections

[peege]

My asthma is nowhere near as tricky as yours Foreverbreathless, but I do have a propensity to infections so have been taking prophylactic antibiotic Azithromycin Mon Wed & Fridays from April to November since I think 2019. It's been a game changer for me. 1st 4 winters on it infectionfree, 2 infections in 2023 and that's it (🤞🙏🤞🙏). Like Patk1 I also take precautions. I'm rather pleased at the mo, I've just spent 9 days with 3 little grandkids and survived unscathed (mind you, I did drink an effervescent Vitamin C 1000mg daily to boost immunity, another tool in my armoury against bugs. Works for me).

All the best to you. P

[Foreverbreathless in reply to peege]

Unfortunately I’m now in hospital with an exacerbation of asthma and pneumonia 😭 my home from home this hospital 😩

[peege in reply to Foreverbreathless]

Oh no, I'm so sorry to hear this. After your recovery will, you be able to have the pneumonia vaccination? Less chance of it recurring, in the meantime get well, soon. P ××× 💐 💐

[Patk1]

It's q likely Yr pft/pf are down due to aftereffects of frequent viruses as opposed to biologic

[Foreverbreathless in reply to Patk1]

I just haven’t felt any different after 4 I’m still very breathless I was hoping the biologic would help but it hasn’t. I’m back at consultant in 2 weeks. He’s thinking of changing it. 🤞

[Jonn54]

Hi me too I've been on nucala for over a year still extremely breathless. My feno shows improvement but I don't hoping to maybe try another biologic fingers crossed.