Brilliant Benralizumab/Fantastic Fasenra 🎉🎉

[EmmaF91]

Hi all

As you may or may not be aware, I have been on benralizumab injections now for 16 weeks (4 doses) and WOW!

Having been ‘returned’ to my local to get my stabs (now every 2 months), I finally got a chance to catch up with one of the ANs there... having not been in the local since starting benra!

To put this in perspective, pre benra I was escalating back to bi-monthly admissions and getting worse each admission. This is officially the longest time I’ve spent without an emergency trip since it all kicked off 4 years ago!!! I can now claim it’s been over 4 months since last admission and almost 4 months since last discharge (3 days to go!)!!! I’ve also managed to drop my pred to 15mg (with a blip a few weeks ago sending me back up to 40)!

My LANs face when I said this 😱😱😱! 🤣🤣... it really did get to the point where I was starting to question if working was going to be feasible if benra wasn’t started soon so to go from that to planning on joining sports groups for after work is amazing! It is the first time she has ever seen me ‘well’ and not on the countdown to hospital!

Don’t get me wrong, the are still some asthma issues (the benra only helping with my e-asthma not my atopic asthma), but they have all been dealt with at home, with no more than 2 nebs a day! And the side effects aren’t too bad compared to some too! The irritation of my angiodema/urticaria, flu like symptoms and mild worsening of asthma (something I forgot to warn my LAN about... oops 😅) usually only last 24hrs, and long term issues seem to be more fatigue and headache based... but no where near as bad for me as mepo was!!! The only thing I’ve had to change in my life due to benra is informing people (ie my own patients 😉), that I’m now more prone to catching chest infections etc so please cancel appts if they are ill!

But I’m feeling positive that my life has un-paused and I can do basically whatever I like now (within reason 😉)! I’m still not scoring great on the ACT but as my local AN said it’s a matter of perspective... pre benra I was scoring 5-7, now I’m 12-14!!!

So for those really struggling or at the start of your journey please keep going and remember it’s about finding what’s right for you so experiment until you’re feeling more stable, for those at the severe e-asthma end I encourage you to keep trying biologicals even if you’ve had a bad reaction to 1 (it took me 3 😅)... benra may not be the right one for you (cause we’re all different 😉), but it’s worth a try if you haven’t already, are struggling and it’s on offer!, and for those non-e/allergic asthmatics keep going, there are more biologicals in the works, hopefully soon they will find something that is right for you!!!

Hope you are all staying as well as you can!

[CDPO16]

I have been wondering how you were. Very glad to hear that you are so much better and so much happier. Long may it continue xxx

[EmmaF91 Community Ambassador in reply to CDPO16]

Thank you! Thought I’d give the site some positive experiences!! Hope you’re ok xx

[CDPO16 in reply to EmmaF91]

Started on prednisolone and antibiotics yesterday after crappy 2 weeks. I have a good GP practice which operates a triage system. Within 40 minutes of phoning I was in the surgery having a consult with one of the nurse practitioners. After a chat and a listen she said my lungs were very crackly. I have no S/S of infection but something has obviously triggered inflammation though I have no idea what.

All that said, my problems pale into insignificance compared to yours. I think you are really both admirable and inspirational in the way you cope and support others. xx

[EmmaF91 Community Ambassador in reply to CDPO16]

Sorry to hear this, but glad you’re at a good surgery and got what you need!

Ha! I often think the same about everyone else... like I know I’m bad, but I’m really not that bad compared to some! I have friends with different issues and we often play the ‘youre worse’ ‘no you are’ game 😅.

I think the key is that we all have to deal with the hand we’ve been dealt, and you can do that either with a smile and help others avoid the same issues you’ve had or cry and become bitter about it all...I do have my crappy/bitter/down days but I rather prefer getting on and doing than wallowing!

I hope you start to have a better time and feel better soon xx

[Wheezycat]

So pleased to hear you are so much better! Andit is indeed a matter of perspective. Glad to hear you can now do more of ‘normal’ things, whatever that may be.

[K8ty25]

Im so happy to hear this is working for you!

[twinkly29]

Really pleased it's going well for you! 🤩

[MrsCMK]

I read this with sheer joy! I love hearing these kinds of things. Glad you’re on the mend!

[Billygoat]

Delighted for you. So pleased.

Jo

[lucia_m]

Yes this is great, really happy for you!

[Junglechicken]

Emma that’s amazing news. I’m so happy that you are improving on this treatment. Asthma can make your life very miserable.

[Mogget]

This is such fantastic news - I’m super happy for you 😄