Have you been diagnosed with IgG4 Related Disease? If so, please contact John Mills @VUK.

[Suzym2u]

1) Have you been diagnosed with IgG4 disease?

2 ) Have you been diagnosed with IgG4 disease and been given Rituximab?

If you can answer yes to either question , could you please contact John Mills, chairman of VUK, by 5pm today. [e-mail]

Thank you

Susan

[Hidden]

I'm in the process of being diagnosed with IgG4 disease.  Would be interested to know what you know.  Are you doing research into rituximab for this?

[John_Mills Volunteer in reply to Hidden]

Hi, IgG4 is very rare and we only know of one or two cases. We have recently added it to the list of vasculitis types on our website.

vasculitis.org.uk/about-vas...

You can download this info as a pdf.

There are only a few Drs with any serious knowledge of it.  Dr Alina Casian & Dr David D'Cruz at Guys & St Thomas's are in that select band.  As you will see

from the info on our website, rituximab is used when other treatments have failed.

Let me know if there's anything else we can do.

BW - John & Susan