Benralizumab

[Titch1908]

Anyone have any experience with these injections? I'm currently on xolair but my consultant has suggested changing to these to try and wean steroids.

[d2read]

Benralizumab (Fasenra in the US) has saved my life. With the first injection in June 2018 I went from raging levels of eos (I have hypereosinophilic syndrome - HES) to complete remission. Since then, I haven't produced another eosinophil, although my body has preserved its ability to make eosinophils in case I'm ever taken off. I still have all the complications of decades of uncontrolled HES, but my quality of life has also improved so much.

I am also still taking Xolair (omalizumab), which has made important (although admittedly slow) gains in reducing my allergic responses to a wide variety of allergens, and therefore being the primary trigger for my most critical asthma attacks.

I was put on Xolair first, in 2012. Last year was the first year that I didn't have a single asthma attack (most of which have been triggered by allergies since childhood). The chief researcher on HES at our National Institutes of Health recommended I continue the Xolair with the benralizumab, given my HES, e-asthma and severe allergies.

Good luck -- let us know how you do!

[ellamental]

Hi Titch1908. I have had severe, brittle asthma all my adult life and frankly it has been a major pain in the arse and I am amazed I am still here to tell the story... I have had a few close calls over the years as I am sure many have. I am 56. I have been on Benralizumab (Fasenra) for about a year and what a joy it has been. I have reduced the prednisolone to almost nothing, come off the theophylline completely and rarely used the nebuliser for many months. I really could not believe what a difference the injection (every 8 weeks at home... very easy and they deliver it to your home) has made. Then unfortunately at Christmas I had a series of attacks over a short time but it did then return to being good again until a few weeks ago when I had a chest infection. Took pred again and the nebuliser, antibiotics and it has now gone and my breathing is pretty good again. My consultant said he has been working in respiratory medicine for over 30 years and had got used to giving people bad news and now it feels like the film Awakenings. I read up the side effects etc (I have not had any) but it is worth knowing all about it. I am part of the ongoing research which is a challenge... blowing into tubes for what seems like ages... but interesting .. watching the data and info on the screens. I figure someone has done this for me so it is the least I can do for future asthma sufferers. While it is pretty much a wonder drug it was a bit of a shocker when my asthma just returned (albeit temporarily) in a big way so worth knowing that. Great to hear d2reads experience of it and as he/she/they said.. let us know how you get on if you do decide on this route.

[Whizzymaz in reply to ellamental]

Hello Titch, Yes I started with Benralizumab injections in December, my last injection was in Feb and its the start of going 8 weeks between injections so fingers crossed. So far I have been much better, I've halved the Fostair 100 which I was taking on a MART regime, so instead of 7 - 8 puffs I'm only needing the maintenance 2 puffs twice daily. However, I am still taking the a maintenance dose of 5mg pred daily which we hope can start to be reduced after the next injection. The reason why I am still on it is because I have had a few "spikes" although quickly recovered from them, and with exposure to more triggers coming up with springtime and also the longer period before doses, the consultant felt it was better to wait. Fortunately no spikes so far since the last injection. Also no side affects, so far, apart from feeling a little back ache, which has become less with each subsequent injection. Good luck with your journey.

[Hil101]

Hi, I started Benralizumab in December so have had the first 3 injections which are a month apart and now onto 2- monthly. I was diagnosed with severe eosinophilic asthma just over a year ago following a period in which I became very ill but nobody realised it was asthma. I had a very bad cough and breathlessness and the eosinophils could clearly be seen on my lungs on a CT scan.

I also take Fostair 200/6 and sometimes an extra steroid inhaler. So far, I have not noticed any benefit from the Benralizumab and my peak flow has not increased. I also had an exacerbation requiring prednisolone a month ago, after 9 months without an exacerbation.

Sorry not to be able to be more positive!

[Davenpos]

Hi

I am.benra for past 2 years ...positive I have not been.in itu negative I can't drop from below 20mg pred without a flare up...

Balance on.life ...I.ok.just have to.live with it as I.knoe if go.back to itu I.wont survive...

Can't believe how my life deteriorated so fast...

Bloody asthma