Biologics for asthma

[BG2015]

Is anyone currently having these injections for their asthma? My respiratory nurse is putting me forward for them as we just can't get my asthma under control.

I'm now on Fostair, Spiriva Respimat, Montelukast, Ventolin and now Uniphyllin. I'm also on my 7th course of steroids in 8 months as my peak flow is so low (160 for the past week) and it's the only thing that helps. I can't stay on them long term because of being prone to osteoporosis.

I just wondered how you've found them and what's the procedure for them long term

Thanks

That's brilliant.

So pleased for you both 🥰

Thank you ❤️

Hello, little update from me.

My asthma has been so well controlled since my second Nucala injection. I've barely used my blue inhaler.

Today I went for some breathing tests and my third injection.

The spirometry tests showed an improvement of 30%. In January my lung capacity/blow was 45%, today it was 58%. The machine that measures the inflammation in your lungs (can't remember what it's called) also showed a massive improvement, which means the injection is doing it's job. Apparently I'm classed as 'super responder'

I'm now set up to have the injections delivered to my house (I believe they deliver 4 at a time) and I will continue with them every 4 weeks and administer them myself. They are like an Epi-pen and very easy to do, I've done the last 2 on my own, under the supervision of the nurse.

These injections have been a game changer for me. I will need to continue having regular bloods and spirometer tests but life is finally on the up.

@BG2015 That is such good news! I hope you have a fantastic summer without the misery of poorly lungs. These new biological treatments give hope to thousands of asthma patients whose symptoms are not controlled by the usual preventers/inhalers. 👍🏻

Husband had his first Fasenra injection today. No ill effects or reactions, and he administered it himself with nurse supervision. Next injection is in 4 weeks and he might be put on home self injection after that if the nurse is happy.

That is such good news that he's started on the biologics. Let's hope they start working soon. I was hoping for a miracle after that first dose but it was the second one that made the difference.

Keep posting so we can cheer him on 🎉

@BG2015 Im so glad it worked for you. Husband became acutely unwell last July, loss of appetite, weakness, mental confusion and rapid weightloss which was finally diagnosed as EPGA and hyper eosinophilia in March this year. The high eosinophils levels caused the adult onset asthma and nasal polyps about 15 years ago. The acute flare last summer has damaged his heart and the blood vessels in his brain. Eosinophilic asthma is still very much under diagnosed at GP level which means years of worsening symptoms before access to consultant lead correct diagnosis and treatments with new biological. Sorry for the essay, just wanted to help anyone reading who is struggling with poorly managed asthma.

@SilverPearl I hope your husband is ok and his asthma is under control.

I've now had my 4th injection, this one was done at home. I don't feel like it's working as well as doses 2 & 3 but know that it can take a while for the full affects to be felt.

I'm certainly better than I was pre Biologics but having to use my blue inhaler a bit more. But, still no steroids which I'm pleased about.

I've lost a stone in weight since not being on steroids.

@BG2015 Im pleased you can self medicate now, husband is keen to do this too. Keep monitoring your peak flow, husband is continuing with 10mg steroids daily, so pleased you are still seeing an improvement. The steroid gain is real isn’t it? Husband needed to put on weight after the acute “flare” that made him so I’ll, but he has a larger belly now. Hope you stay well and are enjoying the summer.

@Silverpearl I hope your husband is ok.

Sadly I had to have a short 5 day course of Prednisone at the beginning of August whilst I was in Spain on holiday. Luckily I took an emergency prescription with me. My peak flow was slowly dropping and I was getting more and more breathless.

I had my fifth Biologic injection yesterday so I'm hoping that this one works better. I also have another lung function test next week, plus bloods which will then see how the eosinophils are faring.

I wasn't a candidate for them, but I have a good friend who has been on one for years. She has severe asthma, but no longer has any symptoms. Not so much as a sniffle.

@BG2015 Hope the prednisone had worked and you are more comfortable now. Good luck with the next injection. Husbands first home injection will arrive tomorrow in good time for use next weekend. He fainted twice one morning last week. We asked Guys for advice and they instructed him to attend local A&E due to previous heart involvement in inflammation due to EPGA. All OK though, they thought he was a bit dehydrated.

How was the holiday? Do you feel the heat wad affecting you?

@SilverPearl that's good they checked your DH out.

No it wasn't the heat as I could feel myself going down hill before we went. It just felt like the injection didn't work.

@BG2015 Fingers crossed for the next injection. That’s the problem with pure esosinopholic asthma, you have no environmental triggers you can avoid/reduce. The long term plan is to get off prednisone, but maybe you’ll need a low dose to help keep the blood count down. Best wishes to you.

Little update.

I've now had 6 injections and the last 3 haven't worked at all. My eosinophils are down from 0.8 to 0.1 which is very good and should mean the biologics are working but sadly that isn't mirrored with my symptoms.

My peak flow barely goes above 250. I now have a constant cough which I haven't had since March, this coughing leaves me gasping and very wheezy.

My latest FENO test showed increased inflammation in my airways and my lung capacity through the spiro test has decreased.

Hospital prescribed me a Fostair 100 inhaler to replace the Ventolin as that doesn't work now. It's taken me 8 days and an official complaint to my GP to get this inhaler. But that's a whole other story.

The nurse suggested I could be stressed (going back to work after 6 weeks off) or maybe changes in temperature. But no, none of those things are affecting my asthma. If I have another course of steroids the medical trial will have failed, well I'm afraid it will fail then.

I emailed the hospital yesterday to say I need to be reassessed as my symptoms and (lack of) quality of life are back to pre-biologic times.

The two months the injections worked were like a miracle -it's made me so sad.

@BG2015 Im so sad to read your update. Husband has Fostair 100 which does keep him from acute wheezing. Guys told him that if the Fasenra a doesn’t work there are a few alternatives. Husbands eosinophils are down from the acute flare last year, but still not normal range. He is due for testing again beginning of Oct, so will see if they have reduced further.

GP asthma management is not adequate for anyone with non standard asthma. One the nurses have gone through their standard practices they can’t offer anything else. I wish you well.

I'm glad your husband is faring well so far,

Yes, I agree about GP asthma management. Because I also take Fostair 200, morning & evening they were questioning why I'd got to have Fostair 100 as well 🙈. Why question specialist medics who know how to best manage severe asthma patients. The GP has totally failed me regarding this. I have spoken to the Practice Manager who has apologised but I've also written a formal complaint.

I do believe I may be considered for Fasenra and there's another called Cinqaero but that's the intravenous one so not ideal.

But, I don't know what the process is for moving to a different biologic and how long that will take.

Husband was referred to Guys through his annual hospital respiratory check. He was fortunate enough to see a younger registrar who recognised eosinophilic asthma. It took 2 trips to Guys before he was given Fasenra. I know we keep hearing how stretched GP resources are, but if GP/Nurse lead asthma management were better it would prevent rapid decline in lung functionality.

Due to have my 8th biologic on Wednesday but have taken it 3 days early.

My asthma is terrible with a peak flow of 250 - usually it's 340 or so. I've been slowly getting worse for about 4 days.

I don't think the Nucala is working. My lung function and FENO tests are now both worse than before I started the asthma trial although my eosinophils are down.

Going to have to get some steroid's tomorrow.

I could cry, I have cried - with the frustration of it all.

@BG2015 Very sorry to read your update. Looks like Nicola is working at the level of stopping eosinophils, but you have another environmental trigger still. I hope you get more help, there are other biological drugs. Best wishes to you

I'm so sorry. Have they talked to you about switching to another biologic?

In some ways, if the first biologic fails it provides more evidence to support their application to try the next one.

Don't despair 💐

They have said I can stop the trial and they will then discuss my case at the next MDT meeting. This was back in September. But I decided to just plod on.

The Nucala seems to just keep things ok but I've struggled for months. It's certainly not how I thought it would be.

I've emailed my consultants secretary to ask to have my case reviewed as I feel the asthma nurses (although wonderful) aren't really listening and are happy for me to just keep going.

I need to try Fasenra now as this obviously isn't working but sadly as with all things medical everything takes time.

I'm so sorry to hear your update - I was cheering for you when the earlier updates were positive. I do hope you get another biologic, as you had such a great response to start with. Asthma is underestimated.

It really is!

Reading the NICE guidelines they put you on the cheapest one first.
Nucala is £850 per injection, Fasenra is £1200 per injection.

The third one for eosinophilic asthma (can’t remember its name) which is an infusion is the cheapest but it comes with the additional cost of a day in hospital whilst it’s administered.