Although I'm 21, I've also had CRMO since 17 (now realised to be full SAPHO), with the CRMO presenting in the mandible. I saw a great oral surgeon here in Adelaide, South Australia who is head of the Oral & Maxillofacial Unit at the Royal Adelaide Hospital/Adelaide University by the name of Prof. Alastair Goss. He has a significant research interest in osteonecrosis of the jaw (ONJ) due to bisphosponates and as he performed several operations on my jaw would not let me use them (as you seem to be aware, the risk of bisphosponates incduced ONJ appears to increase with any recent oral surgery or dental work). Although some of my other doctors disagreed at first, they now all seem to agree it was not worth the risk, as do I.
I have been on oral prednisolone for a couple of years now and although it does work well, does have a range of side effects I'm sure you're aware of too. I also started methotrexate just a few weeks ago which also has it's fair share of side effects, but given the other options sounds like it is probably the best choice for both of us. If the methotrexate does not cause any major improvement I am also preparing to start infliximab (Remicade) which is a TNF inhibitor, but we expect this will reduce inflammation, not so much any actual growth, and it's use is more debatable than the other drugs mentioned.
Luckily my jaw has not been a problem since starting the prednisolone, it has been inflammed a few times, but has not regressed to the growth that originally required surgery to correct several times. I have been on an a range of immunosuppressants, first aziothioprine which was too weak, then cyclosporin which has bad side effects and is starting to become ineffective for me, and now moving to methotrexate. These have been combined with the prednisolone all this time or the doses of prednisolone I would have needed (probably >100mg/day) would have needed to be given by IV too, but combined with immunosuppressants I'm on about 30mg/day.
I am more than happy to share my dozen or so doctors here in Adelaide, but until last month I had not been seeing a rheumatologist, and although they have all done very well with me, I don't think any of my doctors had treated any CRMO/SAPHO patients before me.
Please do contact Prof. Goss yourself or get one of your doctors to and mention my name if you wish, I am sure he would be happy to help. I know my doctors have done a lot of communicating around the country and abroad when trying to investigate treatment options and the condition itself, and while there is no real "proof" of anything working as such (and we're too few, and all so unique with this), there are a number of journal articles that suggest these are possible options.