Starting IL-5 therapy

[Blowoutthecandle]

Hi has anyone ever been on/ currantly on IL-5 therapy for eosinphilic severe asthma? My consultant wants to start me on it. Seems like theres lots out there (resilumab/mepolib etc). Any tips to having it. Eg. can I self administer at homelike an epi-pen or does it have to be given via i.v. or injection. Any side effects? How effective? Any advice really. Many thanks.

[TuckBox2]

I have been on Mepolizumab (Nucala) for 3 years now, I started self administering Nov 19, so I was already set up when lockdown started. It is very much like the epi pens.

They may teach you how to self inject on your 1st visit, you would normally have to stay at the hospital for 2 hours to make sure you do not have any adverse reactions, but that may have changed since the covid started.

I have had no reactions to Nucala, it is working so well for me that since I have been on it I have not missed a day off work with asthma problems, I could stop 4x daily nebulizers, stopped taking Uniphyllin. I am still on Spiriva, Fostair and Montelukast, but they are talking of weaning me off of them.

nucala.com/severe-asthma/st...

[EmmaF91 Community Ambassador]

I’m on benralizumab now and was prev on mepolizumab (and before that omalizumab 😅)

These two are IM injections and once you’ve ‘proved’ you aren’t allergic to it (typically after the first 3 doses in the UK) you can now self inject at home (this mainly started after the COVID situation... big surprise there 😅). Resilizumab is an IV infusion.

Time frame wise mepo and resil are every month, benra is initially every month but after the first 3 doses every 2 months.

For me the 2 I’ve had have been really beneficial. I have gone from resus/hosp admissions every 1-2 weeks to 5 admissions in a year (2 infection, 2 cat allergy and 1 hayfever so none that benra helps) (I was on mepo for 3/4 months, and 1 or 2 hosp trips... can’t remember 😅)

Side effect wise I was worse on mepo than benra but similar issues. Headaches, muscle aches and pains, o have issues the day I have the injection (mild asthma/urticaria/angiodema) and I am also more tired than I think I would be otherwise. Mepo I had nausea (no one believed it was that, but once I was off of it it stopped). I’m sure there’s someone else but can’t think of it right now 😅. On mepo the side effects weren’t really manageable hence the swap, on benra I can cope with them so for me the benefits outweighs the side effects

I hope that helps

[Pipsqueak77]

Hi

I am due to have my second dose of Benralizumab on tues.

So far I have been impressed.. 🤞it seems to be doing some good for my asthma😊 and I haven’t really had any side effects so far. Just felt a bit tired/achy for a few days after.

As others have said it is like an epipen kind of device and seems quite easily to use. They have shown me how to use it but said ideally they would like me to attend the clinic for a year (if poss) before self injecting. This is because of potential anaphylaxis.

My clinic are also just starting to use Dupilumab another biologic which is an IL4/IL13 inhibitor for severe asthma. I don’t know a lot about this drug tho!

I have to say that the potential long term side effects are a bit of a worry for me but you have to weigh up the ads/disads of the treatment for you.

I hope this is of some help!

Take care 😊👍

[hilary39]

I am on xolair which binds fo IgE not IL-5 but I think the shots are the same. I give mine to myself once a month and it’s fine. Very easy. Good luck! I hope they make a big difference for you!

[Younie]

Im on the mepo and have been for over a year now, with covid the sped up self administration at home, its an autoinjector and sub cut like epi pen. The first few times you have to stay a few hours, make sure you dont have a reaction. Headaches are very common initially, and i knew this so took paracetamol which stops it comming to much. Ive went from approx 25ish admissions to hospital every year to half that, so a massive improvement for me.

[mialouisee]

I am on IL-5 therapy (nucala) IT HAS CHANGED MY LIFE. I have gone from having 40%-80%+ of my lung volume and I no longer get chest infections every month. I use an epi pen style injection which I do myself since COVID but I am on a trial in my area so have been monitored closely. I couldn’t even walk for 10 minutes before and I have just begun a home exercise plan to help build up my new fitness level! I have experienced no side effects which I have noticed. I am still on 3 daily medications but I am no where near as reliant on them. GOOD LUCK!