Has anyone with EGPA (Churg Strauss Syndrome ) tried Nucala shots? I have been on 3, 10mg shots for 10 months and have not needed prednisone

[Tunabird]

I have also been able to wean off my azathioprine. My blood tests and been great. It has greatly lowered the esinophils.

[ElaineRH]

Hi I was diagnosed with EGPA in 2018 I was given 50mg prednisolone initially and eos were always too high. Had methotrexate which made me very poorly and increased pulmonary infiltrates

Then tried Nucala which unfortunately caused my lung function to drop from 45% to only 25%.

We then tried another biological drug - rislizumab (an infusion) which unfortunately I developed anaphylaxis after 10 mins (very scary!)

Finally 10 month ago we tried another new biologic - benralizumab which has finally made a huge difference to the eosinophils! Unfortunately I don’t feel physically any better which is disappointing but I understand the drug is protecting my body from further damage.

And the huge plus is no steroids for several months now!

Really glad to hear you are doing well - interest to know if you physically feel any better at all?

Stay safe !

😀

[Tunabird in reply to ElaineRH]

Yes, l feel really great (other than some neuropathy ) Also, l am so happy to be off steroids! ....Best wishes to you.

[JGM1 in reply to ElaineRH]

Good to hear . I have EGPA and recently started a clinical trial for Benralizumab . I get either Benralizumab or Mepolizumab (Nucala) once a month . I don’t know which one as that is the point of the trial but I have been able to reduce prednisolone already after 2 months without any adverse effects so far 😊

[Reboundman]

Hi Elaine - I was reading your post on here from a couple of years back where you mentioned you had just started taking benralizumab. I was diagnosed with EGPA in August this year and have just started with benralizumab (also taking Pred and Methotrexate but the plan is to taper and get off these hopefully). I was wondering if you have any update based on your experience and advice for someone starting on the same journey? Thanks in advance. Matt

[Guccibee]

Hi. I'm from Wales UK with EGPA and have been on Nucala now for a year. Have found it great that I no longer have to clear my chest in the morning and my lung function has slightly improved , so I am now weening Prednisone from 10 mg every two weeks by 1mg per specialist help, to hopefully come off it.