Benralizumab

[Davenpos]

Is anyone on benra and high dose steroids ....

Or am I the only one

[EmmaF91 Community Ambassador]

Hi

Before lockdown and hay fever season, I had finally managed to wean to 2.5mg but since end on March I have been no lower than 20mg and constantly up and down on the pred and in and out of hospital. Because this is an ongoing thing there’s been some discussion of switching me to dupilumab at some point in the hopes that I’ll have better control, less hosp trips (8+ admissions since Nov and started benra May 2019) and actually succeed in completing a pred wean, rather than the constant bouncing of the dose I’ve been on (minus End of Jan to Mid March this year where I managed the wean). I’m currently ‘stuck’ at 25mg, unable to drop more as I know of I do I’ll end up needing hosp again in the near future 🙄.

You aren’t alone, but depending on how long you’ve been in benra, how much it’s affected your control level and how much you’re struggling to wean pred, your spec con may decide to either stop benra or to switch you to a different MAB. Mine is on the fence rn. He won’t stop my benra as my admissions and ED attendances have dramatically lessened (this was at my 1yr review in June/July), he’s just wondering if I’d be better controlled on something else. Since the chat I’ve had 2 admissions so he’s considering the switch more seriously I think, as all my hosp trips and pred increases have been either due to allergy or due to infection/virus, neither which trigger are treated by benra, but the allergy aspect will be covered by dupil which covers both e-asthma and allergy.

Hope this helps 😅

[Davenpos in reply to EmmaF91]

Yeah I severe eosinophilic brittle asthma ecmo etc ...but because I don't feel stable on less than 22.5 mg with benra I feel he bullying me saying if don't get pred down funding may not occur...my response is fook funding I fighting for my life x

[EmmaF91 Community Ambassador in reply to Davenpos]

Unfortunately one of the markers for how much of an affect a MAB is having is pred wean ability (as for a few on MABs they don’t have hosp trips but have lots of pred so if the MAB can stop the pred it saves money on long term side effects, making the MAB cost effective). The only one I think that’s not got a pred wean criteria is dupilumab which is still early access and going through NICE approval.

I was made to feel the same back at the 1/2 year appt but when I highlighted how much better I was than pre MABs my con listened (he never saw me back then as I had to transfer tertiary hosp due to moving). I highlighted the difference in control and the much reduced admission count, and how that I was able to work (which I probs wouldn’t have been able to do had I remained where I was pre MAB), this showing it was cost efficient that way. He took this into account at the year review and as I said is contemplating switching me to see if i can get better controlled but doesn’t want to stop it outright without a replacement.

If you can show somehow how much better controlled you are on it (less hosp trips etc) then it should be taken into consideration. Equally if he talks about stopping it ask what’s the alternative. There are a few MABs out there now and some will have a better result on one than the other. Like I said I have both severe allergic and severe eosinophilia asthma, but it’s only through MABs that we worked out that my main driver appears to be the eosinophils, as I have a better asthma response to mepo/benra than I did to xolair (when I still needed monthly admissions)

Good luck

[Davenpos in reply to EmmaF91]

Thank you xx