I finally had my third dose of Boniva two weeks ago and feel promised. It hasn't taken all the pain, but I'm in a much better state. I'm actually able to stretch much more without pain. I notice when I do stretch I hear a lot of popping which in turn leads to more movement in my shoulder. I see Dr. Whyte again in January.
Hi Believe, Been a while since I've been on here. Got in to see Dr Whyte. They were going to do the Boniva injections but as you said it became unavilable for a time. Spoke to Eileen this past week trying to get some lab test to her so we can move foward. Getting to where I can't use my left arm due to pinched nerves in the clavicale area. Some other Drs. from St. Johns looked at me said they didn't feel they could help me. I'm having alot more bone growth and it's happening more rapidly. Alot of big knots growing throughout the sternum, rib cage and clavicles. I keep having real bad sudden shocks of pain throughout the chest, arms and shoulders. Hope things get rolling with Dr. Whyte soon. Still don't understand how he's going to reverse the bone growth or if I need to keep trying to find a Dr to help with the TOS. Hope all keeps going well with you. I'll try to post alittle more often to keep you and others up to date just incase it may help someone
Hi All, Just a short update. Still haven't started IV Ibandronate (Boniva) treatment. Had to delay b/c of low vitamin D levels. Awaiting lab results. Hope things get back on track. Found a site that may help some, Sternocostoclavicular hyperostosis: a review, by Matthew B. Carroll MD; http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3382681/
Hello Kirk and Patrick! Just wanted to check in on you guys. I just saw Dr. Whyte today. I'm feeling much better, but still have tenderness and pain, but overall doing much better. He wants to try another round of Boniva this year. He said that there are several patients coming to him now that got his name from this website. I'm happy that he is able to help. I'd like to keep in touch with you guys and support each other. How are you guys?
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.