Welcome to NeuroTalk Manxy but I am so sorry to read that you too have SAPHO. What a nasty disease it is.

I have seen neice in the most awful pain and I wish there was some way I could take it from her..... Thankfully she also has periods of remission where her painis fairly tolerable.

Her rheumatologist has tried different medications but I do believe that Methotrexate is the one that has given her the most relief.

I will contact her on your behalf (we also live in Oz) and get her current treatmen regime for you. I'll get back to you as soon as I can.