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

Bump - anyone?

Following that question

hey there, sorry I dont know about that, but i have read a few books on fasting and ketogenic diets lately and apparently when used together these can be used to help minimise asthma symtoms because it helps calm the immune response.

Think I'm beyond that to be honest.

There's zero evidence of that.

Just thought I'd add to this post as I've now had my first biologic injection.

After a year of pretty much continued steroid use, three periods of time off work and being unable to do many things because of my uncontrolled asthma - my asthma team have told me I have something called Severe eosinophilic asthma. Spiro tests and blood tests have shown me to have this condition. It's a condition where my body produces too many white blood cells, which in turn affects my asthma.

It may have been caused by infection (covid) or the radiotherapy I had for breast cancer last March.

Normal asthma medication (inhalers etc) won't help so I've been put on a medical trial to take Mepolizumab (Nucala) .

I had my first injection on the 26th April and for the past two weeks I've been ok, breathing not great but managing. On Friday I took a turn for the worst and my peak flow is 200 which means I'll need steroids.

I have my second injection on the 24th May and apparently it can take 3-4 injections before you get to really see the benefits of it.

Hope this helps anyone who is about to start on biologics

Sounds awful OP but I hope the second injection works. Please keep updating. I've just been taking off spiriva to spiorola(?) and my breathing is worse, I didn't think that was possible 😳

My husband has the same condition, he has been through the same route of uncontrolled asthma despite increasing medication. He has just completed his third dose of steroids this year as he was advised he needed this before starting the trial. He hopefully starts the injections in June at Guys. The asthma consultant who put him forward said the treatment is “life changing” which has really got our hopes up. Can I ask if you had a heart MRI before starting it as he has to? I sincerely hope it works for you, it’s awful watching someone being so debilitated by the breathing problems, cough and mucus. I am very grateful you posted.

I did yes, although I have been having regular heart scans because of some cancer treatment I had.

I think I was expecting a miracle after my first injection but it can take quite a few months for it to start working.

I joined a Facebook group - it's American but offers lots of advice about the different biologic injections. Some people on that site find themselves in the position of their insurance provider deciding to stop funding the injections after being on them and finding them working. Makes me so grateful for the NHS

Sorry, mis read - it wasn't an MRI just a routine heart scan

Go back to your GP and fight your corner

Thanks for confirming about the heart scan . We too are very grateful. You feel so helpless when all the previous meds don’t help. He had never smoked, isn’t overweight, doesn’t drink, eats well and keeps as active as possible but has days when walking upstairs leaves him out of breath. I’ll look up the Facebook group. I really hope you do see an improvement yourself.

Pixiedust1234 Keep nagging your GP please. Husbands routine asthma nurse appointments just logged his declining lung function which lead to an emergency hospital admission 19 months ago. It was only when he finally saw an asthma consultant that they did the full blood test and found it was eosinophilic asthma that he started to receive better treatment.

I was very similar - emergency admission via A & E with a peak flow of 160saw me spending 4 days in hospital last November.

It was that, that triggered being referred to the respiratory team.

Have you tried asthma support UK facebook group? Many people with a huge experience in biologics are on there.

Hi, I’m on biologics for my asthma (Benralizumab). It’s been life changing for me.

I did a trial of Nucula, but suffered from severe joint pain.

Hope they work for you too.

Yes I'm on there!

How many did you have before you started noticing a difference?

I have my second one next Wednesday (24/5) and I've had to go for steroids this morning as my peak flow was 190 (it's been slowly dropping all week) GP also gave me antibiotics and sent me for a chest xray. I'm not coughing anything up, feel totally fine in myself so I'm very confused as to why he's given me antibiotics. He says he could hear something on my chest.

I did explain to him all about the biological trial etc and I could see he had it on his screen. He gave me a mini pep talk about osteoporosis and how steroids can increase the chances of osteoporosis, but I told him I know all about that as I'm on medication for breast cancer which can cause osteoporosis and I had a bone density scan last year.

I'm on biologics to STOP having to have steroids but obviously there's a cross over period.

Hi. I can’t exactly remember as it was three years ago now. It was quite quick though.

They told me that if a particular biologic didn’t work during the trial, that they would trial another one.

I was steroid dependent, and I haven’t had any steroids since I started the biologics.

Have you not got an asthma specialist nurse at the hospital that you can speak to? Instead of the GP?

I've got a number I can ring, they send prescriptions over to my GP but the receptionists can never find them and then I feel like a liar when they tell me there's no prescription. It's a nightmare.

It took me 5 days to get the last prescription. I had to keep ringing twice a day until they miraculously found it, it had been sent to some sort of 'portal' on the day I spoke to the asthma nurse.

I'm on Xolair which I think is used for asthma (I take it for allergies) and it's been life changing for me

I had my second Nucala injection on Wednesday. I've done quite a bit of walking this weekend - some of it uphill and I've coped quite well.

I'm nervously thinking that it's working. I know there's still time for things to change but I'm feeling positive.

I'm still waking up ready to take my inhalers (Fostair/Spiriva Respimat) and my tablets (Uniphyllin/ antihistamine + Beconase spray) but my peak flow is staying pretty stable between 300-350.

Next one is June 21st with a blood test the week before and a spirometer test just before the injection. My lung function was 45% in January so fingers crossed there's an improvement.

Thanks for the update, I’m glad your feeling positive and seeing improved lung function. Husband had his heart scan this week and had another appointment in June so hopefully starts treatment then

Let's hope they get your DH on the injections ASAP

@BG2015 Husband has been approved 👍🏻Treatment starts within 6 weeks. Thank you NHS