Hi there
I've been diagnosed with severe Eosinophilic Asthma and have had numerous courses of steroids with Montelukast tablets at night. Mild Bronchiectasis on top.
I've been accepted for Il5 antagonist therapy which I feel really positive about. Anybody else been on this that can give me some encouragement?
Take care everyone in these difficult times
Simon
Hi
Which MAB are they putting you forwards for? Mepolizumab, benralizumab or resilizumab? They are all anti-IL-5 😅.
I was on Mepo which really helped my lungs but my body didn’t like it (lots of side effects). I’m now on benra (works differently) which has given me less issues.
For more about MABs - healthunlocked.com/asthmauk...
EmmaThanks so much for that Information and the link so I can educate more on what drugs are available.
Such lovely people on here
Simon x
I have been on Mepolizumab (Nucala) since March 2017, it has been a life changer for me, since starting mepo I have not lost a day off work due to asthma problems, I have had no hospital admissions, no steroids, stopped 4x daily nebs.
I am still on Montelukast, Fostair, Spiriva and bp/heart meds
Thanks for your reply, it fills me with great hope whenever that will happen. The biggest issue at the moment is lung inflammation, if I can get rid of that my everyday life will be so much better. Are you in the UK? Do you still get flare-ups or has the new therapy reduced them? At present I don't know which drug they will use but obviously I don't want bad side effects.
I am in London under Guy's hospital, I was on Omalizumab for 4 years before being swapped to Mepo, it did reduce my admissions and my exacerbations until I had a bout of pneumonia and it stopped working I was having 5 - 6 admissions every year.
I was diagnosed with asthma 1984 and have been under Guy's 30+ years I am now 66.
I am the same as your withEosinophilic Asthma. Had a bad times, and over a year now on Mepolizumab injection. Or better do it myself for about 6 months, because of Risk to go into hospital. I had no asthma attack since I take the injections. I have some problems the last 4 months, lots of colds, I do will have a catch up with my consultant next month to discuss Mepolizumab injection, maybe to change. But so far I had good experiences with the Injections, but every one is different. Oh forgot, I had some side effects first 2 month, but they went away. Wishing you all the best that it will be helpful for you. 🍀🍀🍀
Thanks so much for the response it means a lot. Always kept fit all my life it's only been since 49 -50 that it all changed. Any I'm feeling positive for the future x
HiHave been on Benralizumab for 8 months and it’s been great! I have injected at home myself since the first 3 jabs and have never looked back!
I must admit that I did ( and still do) have some worries about long term side effects but like anything it’s a trade off and there’s no doubt that my asthma is much more under control now.
So give it a try.. fingers x you get great results too...
Take care 🤞😊
Hi I to have severe Eosinophilic Asthma and a couple of years ago I was put on monthly injections of mepolizibub, totally changed my life I was like a new person.I was getting my steroids right down, no hospital admissions didn’t need any ventolin at all and my life was nearly back to normal. Sadly after 8 -9 months it stopped working and they took me off it so back on the usual meds for 3 months until they said I could go on resilizimab injections, had the first one no probs the second one had a weird reaction and put me in hospital for a couple of days so they stopped that. Another couple of months later last February they put me on same drug but on an infusion each month of which I really haven’t felt any benefits, I’ve told them that I don’t think it’s working but they insist I should stick with it. I’m really feeling as rough as I did before I went on it, still on reduced steroids and salbutamol but not feeling too well . I’ve got a video consult with consultant on 25 jan so I’m going to ask him if there’s anything we can do
Every month it’s not nice having to go to hospital at the Brompton can take me 1 1/2 hrs each way and at least 3 to 4 hrs in the hospital it takes so long the whole days gone
Don’t get me wrong I do appreciate the meds and treatment and what they’re trying to do but they don’t seem to be listening to me
Will have to wait and see how consultation goes
But this is just my case it may and hopefully will be better for you
Good luck
Thanks
Mike
Hi Mikeyboy2020
It’s really interesting that they swapped you from Mepo to Reslizumab... is there a specific reason for this?
My clinic told me that Benra is now their MAB of choice ( for eosinophilic) not only because it seems to have better results/less side effects but also because it is injected once every 8 weeks - which after a bit of training can be done at home yourself. No need for IV infusions... and all that faff travelling to hosp etc..
Is it worth mentioning this to your Cons when you next catch up?
Maybe a solution..?🤷♂️
Take care 😊👍
Good luck Simon 👍 Wishing you all the very best and hoping the biological treatment will really help you.Take care.
I suffer from eosinophilic asthma, it started when I was 55 yrs. I was still working but it was tough at the time because of my awful condition. Several years later I was put on mepolizumbab (nucula) it changed my life completely for the better. I hardly take prednisone and only get a mild exarcebation a year. 74 now climbed snow don recently and do a lot of trekking, canoeing and cycling. Hope that inspires you Cooperman
Thanks all
Hi Simon, I have been intubated numerous times, and have been on daily prednisolone as well as my uniphylline and other inhalers too - I am very strict with my meds, and I am an RN so very well aware of consistency. I was previously intubated around 3 times each winter with severe refractory eosinophilic asthma and had several respiratory arrests.
I am now on the IL5 antagonist MEPOLIZUMAB (Nucala) and use the self inject at home every 4 weeks.
For me, the Mepolizumab has absolutely changed my life for the better I do suffer from severe headaches a few days after injection and around 5 days before the next is due, but I have not been hospitalised at all for my asthma, and I have significantly reduced my corticosteroid.
I have found this to be phenomenal and honestly it really has made such a difference. it did take a few months (around 8-9 months) for me to have full effect, but it is a total game changer for me.
Wishing you all the best with the treatment if you opt for it! I didn't let the headaches put me off, and it is only a few that suffer from that. They were intolerable initially, but the benefit of the Mepo totally outweighs any side effect for me anyway
xoxo
Let us know how you get on
Hi Simon. I have severe asthma with final sensitisation and am under the care of Guys. I have had asthma for over 50 years and was diagnosed with severe asthma (eosinophilic) and put on Fasenra in July 2018. Fasenra has allowed me to come of high doses of Prednisolone (although I am currently back on a short course because of gradually worsening asthma symptoms). So for me Fasenra has been a great help. I still have daily asthma symptoms but was very relieved to get off the steriods. Like some, I wonder what the long term effects may be, and I am currently wondering what will happen when I finish this course of steriods. Hope it works well for you,
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