Recent Diagnosis After 4 Years

I have recently been diagnosed with SAPHO syndrome after being basically fobbed off for years
I have complained of painful and aching shoulder joints since the age of 13 and been repeatedly told it was just inflamed rotary cuffs and referred to physiotherapy, which I'm pretty sure has made my condition worse. Recently however, my collarbone became swollen and immensely painful, after a series of tests and bone scans I was diagnosed with SAPHO. Currently taking steroids, cocodamol, naproxen and vitamin D supplements, still experiencing a lot of pain. I'm not seeing my doctor again until January 2nd at St Helens hospital. Just wondering, how do people manage their condition? And also, does me having SAPHO definitely mean my skin will be affected in any way? Currently I just experience problems with my lower back, spine, collarbones and shoulders. Does anybody have any advice?
alicegriffiths alicegriffiths
18-21, F
1 Response Dec 9, 2012

How did your appointment go? I just left a visit with an orthopedic who took a xray of my collar bones and recommended a rheumatlogist, and mentioned SAPHO. I am having the same problem, my collar bone feels like it has doubled. Most of my pain is when I sleep at night and lay on my side which puts pressure on my collar bones. They "pop" and have sharp pains and it feels like there are 2 seperate bones.

Going to see a rheumatlogist but would love to hear how your appt went.

Hello!
I have that exact problem with my collarbones and shoulders!
My appointments went well, I was put on a treatment of steroids which really did help a lot with the pain. Unfortunately not well enough for the doctor's liking. I'm also very calcium and vitamin D deficient so I have been told to take supplements (this may just be me like). I also take Napraxen which is a strong anti-inflammatory, it works wonders!
I am due back at hospital in a couple of weeks to see if my calcium level had risen enough and if so I will be placed on the Pamidronate Infusion (drip) - as far as I'm aware this transfers into the bones to help the pain, inflammation and bone overgrowth.
Hope everything went well for you and would love to hear back, thank you so much for taking your time to read and reply to me, it means so much as there is hardly any info or anyone to talk to about this, so thanks a million! :-)

Wow, that is a lot of meds, I was really hoping for an easier fix ;o) Had any of that reduced the size of your collar bone? I am going to make my appt with the rheumatlogist this week. I wanted to do some research and make sure I got a good one. What type of doctor is treating you? is it a rheumatlogist? Thank you for replying, I feel the same way!

Yes, she's a specialist in rheumatology I believe. Unfortunately they aren't as effective anymore as I'm on them constantly. Been booked in for the Pamidronate infusion on the 25th though, so just a couple weeks to go and hopefully I'll see some real results :-)
I hope everything goes well for you at your appointment though! X