Discussions By Condition: Muscle conditions

SAPHO syndrome discussion

Posted In: Muscle conditions 0 Replies
  • Posted By: lismay
  • April 4, 2013
  • 02:02 PM

Hi. I am 49 years old and recently was formally diagnosed with SAPHO syndrome.
It is an autoimmune condition that attacks my bones and joints. S= synovitis A=Acne P=Pustulosis H=hyperostosis O=Osteitis
Some people have both their skin and bones affected. I am fortunate it is only in my joints and bones. I started having pain 28 years ago in my chest. After many doctor visits and a lot of hassle. I finally had a nuclear bone scan and was diagnosed with "sternocostoclavicular hyperostosis." Back then Sapho was not really known to the rheumatology community and it still is considered a rare disease, but they know a little more about now then they did back then.

I went many years with mild flare ups that only lasted a couple of weeks and I would respond well to the nsaid Voltaren. Recently that completely changed. I started having severe pain in my sternum and clavicle and neck and went to a lot of doctors and had lots of tests. A bone scan from my rheumatologist ruled out osteoarthritis and I was told I had SAPHO.I did a lot of research asked a lot of questions and started on a journey of pain that seems never ending. I'm going on a year with this flare up.

My most recent CT bone scan showed a lot of issues. My sternum is inflamed and can be very painful and or stiff. My right clavicle has fused to my sternum so there isn't a joint or movement there anymore. Negative side of that it has caused some lack of mobility in my right shoulder and arm. If I extend my arms straight out, my right arm can't reach as far as my left. Positive side of that is I don't have pain in that joint, because it is not a joint anymore.

I have bone spurs in many places of my body. On my ribs, in my shoulder joints, in my neck. In my lower spine.

I have pain and/or stiffness in my fingers and wrists. Both of my shoulders. All of my ribs. Its hard to get my body moving most mornings. Lowest part of spine is also and issue and both my hips.

I have tried a number of meds. Current meds: Celebrex is my anti inflammatory. Gabapentin is supposed to help with the pain. Enbrel is a TNF inhibitor also known as a biologic. This is a med I inject into my body once a week. It is supposed to help with the pain and stop the bony growth process. Cymbalta is for my depression. Tylenol with codeine for when ipain is unbearable.

I have a lot of fatigue. I used to work full time, now I work part time. I have good days with little or no pain and bad days with a lot of pain. These are the worst because I feel real hopeless when I feel so awful. My coping medicines are puzzles, books, movies and fortunately I can walk and or use the treadmill since my lower body is OK. I have depression.

Nothing is the same in my life since I have had a flare up since last year and it is still not under control.

I am writing this post, hoping I will find some other people with SAPHO and get a discussion going. It would be nice to discuss this with other people who are struggling with this. I would like to know what are your symptoms, what medicines are you taking, and are you feeling better or just coping? I feel very alone with this disease since I don't know anyone who understands what I am going through. Please reply or join the discussion if this relates to you.

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