Benralizumab for EGPA patients

[zoe69]

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 [e-mail]

[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 Administrator Volunteer Vasculitis UK in reply to EGPAGuy]

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]

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

[zoe69 Administrator Volunteer Vasculitis UK in reply to 67RaP]

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

[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 Administrator Volunteer Vasculitis UK in reply to Sparkimoore]

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

[ElaineRH]

hi Zoe, I have been on Benra for 2 and a half years no side effects. Eosinophil count zero. Mepo didn’t work for me at Rislizumab caused anaphylaxis. Consultant says nice will not license either mepo or Benra for EGPA as it’s already licensed for severe asthma and EGPA patients can access for asthma so another license not required…Significantly asthma symptoms not improved during that time …

[zoe69 Administrator Volunteer Vasculitis UK in reply to ElaineRH]

NICE is considering approving Benralizumab for EGPA patients, that is why we are appraising it. The criteria would be different for EGPA patients, plus it would be prescribed in hospitals that don't have asthma clinics.

That it is appraised doesn't mean it will certainly be approved, but it has a good chance.