Vasculitis UK

Churg Strauss ( EGPA) Personal Experiences wanted

NICE are shortly going to carry out an appraisal of Mepoluzimab for treating EGPA (CSS) . If you have EGPA which has not responded to the “usual” treatment, ie you have refactory EGPA and it has had a major impact on your life and you would like to share your experience, please contact John Mills John.mills@vasculitis.org.uk

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

Thank you

3 Replies
oldestnewest

My partner has been diagnosed with churg Strauss and has received 6 treatments of cyclophosamide sorry spelling not great - not been successful. Vasculitis team don't seem to have answers he has awful nasal symptoms and now been diagnosed with trigeminal neuralgia so on so many opiates and carbamazepine - we don't have a life anymore he is exhausted all the time awful rashes appear over his entire face and he is severely effected by temperature change air con ext it's been a very hard road and I'm not sure how long this journey will continue - I have seemed to have lost the man I love

Reply

Perhaps if you call the VUK helpline or write an email to Lynn and John they maybe able to help with some advice or just someone to talk to , one to one.. ... this is the link vasculitis.org.uk/helpline

Reply

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

Reply

You may also like...