British Society Of Rheumatologists meeting in London today to discuss ANCA Associated Vasculitis National Guidelines.

[John_Mills]

John was asked to take part in this meeting by Dr Richard Watts.. the meeting was called by the BSR to discuss reviewing, revising and updating the National Guide Lines for treating ANCA Associated Vasculitis.

?John just phoned... the BSR meeting has just finished after 7 HOURS!!!! He was beside himself can't wait to tell me all about it..he sounded so positive...makes all his hard work plus travelling from one end of the country to the other, all worth while ? it must have been strange for the consultants to have someone sitting with them all, who actually has Vasculitis...

[LynneJ Vasculitis UK Volunteer]

Can't wait to hear his feedback!

[Regie79 in reply to LynneJ]

Same here!

[HiveMind]

Ditto!

[Nell]

Thank you John and Susan for your continued exceptional efforts on our behalf

Can't wait to hear the feedback once you're rested John.

Best Wishes

Nell

[John_Mills Volunteer]

There will be a short report in the e-newsletter due out anyday and a full report in the Spring 2013 Newsletter

[Jools52]

@john_mills I have only just seen this. Any chance of a link to the news letter please ? If I had the option then I would much rather go straight to the Rituximab as I feel the cyclophosphamide is very much a scattergun approach and I genuinely fear that if I react badly to it that I could potentially do myself harm. I won't go into it here but suffice to say that this is one of 4 chronic conditions I have & I feel I have suffered as much as any one person can take. I very rarely even leave my home now.

Thanks in advance