Re: Sternoclavicular hyperostosis
Hi All, don't know if you guys still use this site, but I been reading your posts about Sternoclavicular hyperostosis (SAPHO). I got diagnosed Oct 2013 after experiencing severe pain and discomfort in my left collar bone and my collarbone partially dislocating which started in June 2013. I had a couple of MRI scans and was lucky enough that the radiologist carrying out my 2nd one had seen SAPHO before and recognised what he was looking at on my scan. My shoulder specialist had never heard of it but referred me to a rheumatologist who had come across 3 patients before me with SAPHO.
I had an IV infusion of Pamidronate in November 2013 and I still get pain, discomfort and collar bone still dislocates but whereas in the beginning it was happening once a week its now more like once every 3 weeks. Shoulder feels stronger but I still have to be so careful. To date I have partially dislocated my collarbone 22 times. I am having another MRI scan tomorrow and my consultant is looking at giving me more Pamidronate.
Ive been told that SAPHO is extremely rare and that it is an auto immune disorder. Basically they don't know how it starts but your bone is made up of 2 types of cells and one of them is attacking the bone and the other is making the new bone to make up for the damage.
I'm in the UK by the way.
Last edited by moderator2; 03-16-2014 at 12:30 PM.