Just an update about my niece.....

The bone scan I thought was next week actually happened today, and here's what my niece wrote to me:

[The scan took over an hour and it gave me a nose bleed which I thought was a bit interesting.

The guy wasn’t allowed to tell me much only that "he could see the pain in my joints" and he was taking extra pics of my problem areas.

As he took extra pictures of my feet, knees, hips and arms I think it’s fair to say whatever it has invaded more of me than I was hoping. Although if it is Sapho Syndrome, it will most likely come and go from all of my bones and joints.

Thanks for posting the question on your site, with any luck some more info might come in.]

Thank you again Nicc, and if anyone else has any information about the condition, I'd be very grateful.