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Biologicals for Asthma

elanaoali profile image
38 Replies

I being referred back to respiratory consultant at my local hospital because I have had 3 courses of rescue steriods this year. I take fostair nexthaler 200/6 2 puffa twice a day. Monkelaust ,dymista and ompreloze for acid reflux. So not able to up my inhaler. Has anyone here been in my position? I having a chest xray in 5 weeks time to check my lungs.

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elanaoali profile image
elanaoali
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38 Replies
Homely2 profile image
Homely2Administrator

I managed three hospitalisations in four months. They stopped it with four weeks of pred and adding in spiriva.

The pred stabilised me and the spiriva seems to stop my asthma escalating to nasty levels. It does not stop the attacks but contains them.

Patk1 profile image
Patk1

There's criteria to be met to qualify for biologic therapy.x

elanaoali profile image
elanaoali in reply to Patk1

What is that? My GP had just had some training that morning of my appointment on care of serve asthma. They records of asthma patient had been audited and my records had been flag up because of my 3 lots of rescue steriods. He said that when I seen the consultant in 2019 these biologicals had not been avaliable then.

He was also going to talk to my asthma nurse about whether to change my treatment to mart regime.

I also talked to asthma and lung uk helpline the day before. The nurse wanted me to ask the GP to re refer me back to the respiratory consultant at my local hospital.

So I was going to ask the doctor to refer me back. But I didn't have to and he did it.

Anselm198 profile image
Anselm198 in reply to elanaoali

Biologics have been readily available for at least 10 years and were used 20 years ago. Certainly in 2019 you should have been able to have them

elanaoali profile image
elanaoali in reply to Anselm198

My consultant got my asthma under control and the subject of biological never came up. I was discharged back to my GP.b

Patk1 profile image
Patk1 in reply to elanaoali

Different criteria for ea biologic.theyll do tests+ decide frm there.criteria Is q strict as treatment is v expensive.it doesn't help everyone,so they try to target those who have indications it may benefit them.x

elanaoali profile image
elanaoali in reply to Patk1

I gathered that they are expensive and there is a tight criteria. What tests do they do?

Patk1 profile image
Patk1 in reply to elanaoali

It depends on the biologic.ive severe eosinophiliac asthma.i had repeated bloods,xray,ct scan,blood gases, feno,lft, bronchoscopy, history - I had severe uncontrolled asthma for yrs with exacerbations approx ea6wks,lasting various lengths of time + Airways were constantly twitchy and wheezy

sciencepotato profile image
sciencepotato in reply to Patk1

The most recent biologic tezspire is supposed to be for broader population of severe asthma patients irrespective of its phenotype. It doesn't require inflammation markers to be high as for eosinophilic asthma biologics. Hopefully hospitals will be less oriented on the costly side of the treatment and instead give it to more people to trial in the hope that it'll help to get their lives back.

AngDeb999 profile image
AngDeb999

Hi. I was like that all last year and on the same meds as you. Now on Nucala and not looked back cut out montelukast few weeks ago the biologicals have been great for me no chest infection for 6 months long may it last

elanaoali profile image
elanaoali

Thank you for answering my questions. I glad it's working out for you. I been on monkelaust for 8 years. My old asthma nurse put me on it. It's for my allergic part of my asthma. I am very allergic to house dustmite. I have a chest infection at the moment. (I have late onset asthma). I have never had a chest infection with asthma and its has done a real number on my asthma.

Question how did it take for you to get an appointment?

AngDeb999 profile image
AngDeb999 in reply to elanaoali

Hi. When I was referred back to specialist it took about 3 months in all. My asthma is allergy related to. Cats and some air born moled that’s everywhere. But doing ok now after having low asthma for about 40 years it just escalated last year 😩

Patk1 profile image
Patk1 in reply to elanaoali

Ru on antihistamines x

elanaoali profile image
elanaoali in reply to Patk1

Not at the moment I take them for hay-fever in the spring/summer.

Patk1 profile image
Patk1 in reply to elanaoali

I'd be inclined to take forallergy yo dust mites as live in beds,pillows etc and we r inside more in winter x

elanaoali profile image
elanaoali in reply to Patk1

I am prescribed monkelaust for this reason. I am very allergic to house dust.

Patk1 profile image
Patk1 in reply to elanaoali

Is montelukas6 controlling it? I take fenofexadine all Yr x

elanaoali profile image
elanaoali in reply to Patk1

Monkelaust is controlling the allergic part of my asthma. My flare ups this year were due to fine sand particles and cold and chest infection.

LisaLuv3000 profile image
LisaLuv3000

Hi, Yes, I'm in the same boat, but a lil bit further along, I think... but not as far as I'd like. 😅

Referred to respiratory consultant back in March and first saw them in July - breathing tests, blood tests, CT scan and sleep study, plus they started me on theophylline, and I waited. Already on airflusal (was seretide 250), tiotropium, montekulast, fexofenadine, omeprazole (new this year, largely due to all the pred), and mometasone furoate.

I got ill again with chest infection and flare up at the end of September and put on pred again (4th time in 18 months) and was told to contact Respiratory Team and let them know. They arranged an appointment for 10th November....earliest they could do.

In the meantime, despite lots of antibiotics and prednisolone, I'm only just starting to recover and I've been tapering down pred slowly... knackered!

Having spoken to my GP the day before, I was hoping for a really clear plan and the go-ahead for biologics, maybe a different preventer, or something... but it turns out that I have to have more breathing tests, more blood tests, and be referred to some super specialist for asthma because my eosinophil count doesn't show up as high on tests. 🤷🏻‍♀️ I did my research, so I did raise that there are now biologics for allergies and for inflammation (blood tests show really high inflammation when things go bad), but it seems there are more hoops to jump through first. He did also refer me to ENT, as it all seems to start in my sinuses, and I asked to see the hospital asthma nurse.

I know I shouldn't complain, as I know how over-stretched the NHS is, but it did feel quite unsatisfying. Patience is not my forte! 😅

So, long-story, short, try to be patient, but be prepared. I had all my notes and questions written up, which really helps when dealing with GPs and consultants. I'd also spoken to an asthma nurse at Asthma and Lung UK, which helped, and I was advised to request an Alpha-tryptine deficiency blood test, as 2 of my siblings also have severe asthma, so got that at the GP on Thursday.

Sorry for the long message, but I hope it helps a bit. Take care and fingers crossed that it all goes well for you.

Nanto4 profile image
Nanto4

Yep in same place , take Fostair 200,spiriva, monkelaust, easyhaler ,been on steroids approx 6/7 times this year.Referred in July for biologics after a ct scan showed inflammation etc , been accepted on the programme at Guys/St thomas but still waiting for a appointment .Once ive had steroids im fine for about a month then back comes the inflammation.

Yellow-dog profile image
Yellow-dog in reply to Nanto4

I’m there too. Just had sixth lot of steroids this year. I asked about biologics years ago but was told I couldn’t have it as it’s expensive. I’ve been seeing a respiratory physio and she has told me I may now be referred to the doctor for severe asthma and may get biologics but there is a long wait.

Mark-f profile image
Mark-f in reply to Yellow-dog

I’ve been on biological medication since 2017

Xolair

Mepolizomab

And for the last 3/4yrs Benralizumab which I self inject..

It’s not without side affects but my asthma is much better controlled

Yellow-dog profile image
Yellow-dog in reply to Mark-f

What are the side effects please?

Mark-f profile image
Mark-f in reply to Yellow-dog

It’s a monoclonal antibody. So to cut a long story short , it ultimately weakens the immune system, so you can inevitably pick up infections which are a lot worse than say a healthy person but please don’t let it put you off , it’s been a miracle for me , I’ve gone from barely being able to function to living a relatively normal life with very few asthma symptoms

Yellow-dog profile image
Yellow-dog in reply to Mark-f

I do hope I can get this treatment, the last year has been such a struggle.

Tree20862 profile image
Tree20862 in reply to Yellow-dog

I have been on Xolair since 2016. It took a year but since 2017, fall, I have only had one asthma flare per year or less since. December 2022, my pulmonologist started cutting back on my maintenance meds. First the extra inhaler, then the xyflo.

My last 2 courses of prednisone were short bursts.... 5 days and last one was only 3 days at 30 mg😀... December '21🎉 I have also started giving the injections to myself the last couple of years. Scary but less trips to the doctor's office.

AngDeb999 profile image
AngDeb999 in reply to Yellow-dog

Hi. I know it expensive but so are drugs and hospitals admissions they cost any thing from 800/1000 pounds but my specialist counted the number of infections over 6 months and said I qualify. Not sure if different areas have different rules or budgets for this but I’m happy Kilmarnock understands the difference the Nucala makes. Good luck. Keep at them x

Mark-f profile image
Mark-f

Hi , Thats not uncommon..

I’m fact my asthma was so bad in 2014 (I nearly died) I was on steroids prednisone continuously every day 20/30mg for 5 yrs while I waited for nhs approval of biologics..

I’ve now been on Xolair, mepolizomab and now Benralizumab, I self administer my injections ..

It’s been life changing, you definitely need to try to get on these

Jollygood profile image
Jollygood

hi

Have they tried you on all possible inhaler options? Fostair didn’t do anything at all for me & I was really ill for a long time. Eventually the hospital consultant changed me onto relvar & I’ve been much better since. There may just be one that you haven’t tried yet x

elanaoali profile image
elanaoali

I have been on fostair for years and it's been really good for me. It's only been this last year I have had only 3 lots of rescue steriods in the last year. Colds can flare up my asthma but at the present moment I recovering from chest infection. This has really effected my asthma.

Tree20862 profile image
Tree20862 in reply to elanaoali

Wearing masks has decreased my colds dramatically. I still wear one at work and when I go to the store. I still got strep throat in July though. Weird.

elanaoali profile image
elanaoali in reply to Tree20862

Not possible for me to wear a mask at work. I am teaching assistant and work in primary school.

Tree20862 profile image
Tree20862 in reply to elanaoali

I would think that you could wear a mask. Kids are always passing around colds.

It does make it a little harder to speak louder. I had trouble when I started wearing a mask, as required, back in March of 2020. Now it is just part of my routine. It is now optional but my pulm and I agree that it is what is best for me and my health.

elanaoali profile image
elanaoali in reply to Tree20862

I am glad it works for you. I just going to use antibacterial gel and wash my hands regularly.

elanaoali profile image
elanaoali

I got a referral letter from nhs saying that I been referred to local hospital under Airways/COPD/asthma RAS ... lung centre

I will contacted by them or the clinic will send advice.

(In the meantime my doctor is going to talk to the asthma nurse about Mart regime).

If I not been contacted by early January then use referral details.

I am struggling with the fact I been referred. I struggling with the fact my asthma isn't controlled as I thought it was. The chest infection I had has thrown me.

Looking for support and reassure really.

Tree20862 profile image
Tree20862

The Xolair really made a difference for me, for the better.

elanaoali profile image
elanaoali

I am glad xolair helps you. From what I read on asthma and lung uk website I don't qualify for biologicals. I think that my GP will change my inhaler to Mart regime.

redstar9 profile image
redstar9

Your asthma sounds similar to mine. I am on Montelukast, fluticasone nasal spray, Chlorphenamine, Fostair 200/6, Spiriva Respimat and Ventolin. On my 4th lot of steroid tablets and maxed out on all medication. GP can't do anything else but had referred me back to respiratory. Last seen by them in 2021. They were supposed to review me after 6 months but haven't been seen again since despite needing an overnight hospital stay and another visit to A&E. My asthma and allergy symptoms are out of control at the moment. Have just purchased new air filter units and also now on an exclusion diet to see if anything I am eating is making my symptoms worse.

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