Benralizumab for EGPA patients : Vasculitis UK... - Vasculitis UK

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Benralizumab for EGPA patients

zoe69 profile image
zoe69ModeratorVolunteerVasculitis UK
6 Replies

Vasculitis UK is appraising benralizumab.

I would welcome quotes from EGPA patients who are on benra, or have been refused benra to include in our appraisal.

You can either comment here or email me at zoi@vasculitis.org.uk

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zoe69 profile image
zoe69
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6 Replies
EGPAGuy profile image
EGPAGuy

Zoe..one more thought from me. Benra just targets the production of eosinophils at source which means, besides that part of our immune system, the rest is intact..whereas other treatments (high dose Pred/Myco/Aza/Rituximab/Methotrexate/Cyclo etc) suppress our whole immune system leaving us open to all sorts. Thought it worth a mention. Best Lev

zoe69 profile image
zoe69ModeratorVolunteerVasculitis UK in reply toEGPAGuy

I mentioned the difference of targeted therapy.I cannot thank you enough for your insights. I have submitted the appraisal and it has been accepted.

I will keep you informed about the next steps

67RaP profile image
67RaP

I've been having it for 4 months now and unfortunately it hasn't done anything for me x

zoe69 profile image
zoe69ModeratorVolunteerVasculitis UK in reply to67RaP

I am so sorry to hear this. Are they suggesting to change your treatment?

Sparkimoore profile image
Sparkimoore

(Ive been on TRIPLE DOSE MEPOLIZUMAB in Jersey For 7 YEARS & its been REMARKABLE but now becoming unstable.

Hadnt had a single asthma exacerbation in that time. Eucinophils kept below 0.1)

I know youre asking about Benrizumab but might be interested as not licensed foor triple dose in uk by NICE..

Rose

zoe69 profile image
zoe69ModeratorVolunteerVasculitis UK in reply toSparkimoore

I think mepolizumab will be up for appraisal soon. It is not approved by NICE for EGPA, but patients can get it if they are under an asthma clinic. Unfortunately that means you can only get mepo or benra in certain hospitals and not all EGPA patients are eligible

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