Mepoluzimab for EGPA ( Churg Strauss Syndrome )

[Suzym2u]

NICE are shortly going to be carrying out an appraisal to assess if they should approve Mepoluzimab for routine use in treating EGPA ( CSS ). it is very important that NICE should be given evidence of the patient experience of this drug, both good and bad. If you have had experience of being treated with Mepoluzimab and are prepared to share your experience please contact John Mills [e-mail]

Extracts from these personal patient experiences maybe used in the vasculitis UK submission to the NICE appraisal committee

Thank you

[ElaineRH]

Hi, I was diagnosed with EGPA in August 2017. I have just started treatment with Mepoluzimab after months of high dose oral steroids failed to keep eosinophil count down. After just one injection 2 weeks ago the count has dropped dramatically! Although not much change in severe asthma and other severe symptoms symptoms as yet (in fact my breathing got dramatically worse after a few hours), things are looking up! I have emailed John Mills to offer to share my experience with his team and await contact.

Great site BTW - very supportive and helpful to hear from others who have symptoms as I do, and that I am not imagining things as some doctors/consultants have suggested over the last few years!

Elaine RH

[Suzym2u Moderator Vasculitis UK]

Just wanted to say thank you for all the emails John has received up to date, he will work through them and if he wants any more info he will be in touch...the NICE appraisal will not be happening just yet, probably the summer of this year.

Thank you