Patient Comments: SAPHO Syndrome - Symptoms and Diagnosis

What symptoms did you experience with SAPHO syndrome? How was it diagnosed?

Comment from: paula37643, 45-54 Female (Patient) Published: April 23

I just came from a doctor's appointment and he is leaning towards SAPHO syndrome with me. I am scheduled for a CT scan of my chest bone and upper ribs 1st, 2nd 3rd. It is extremely painful up under my clavicle and also my chest bone/plate feels bruised and in a flare, the pain is unbearable!

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Comment from: sara, 25-34 Female (Caregiver) Published: October 29

I suffered from SAPHO syndrome 2 years after delivering my first baby. I had neck pain, pustulosis on my hand, difficulty in breathing, and chest pain. I was lucky because I am doing excellent now after lots of tests and of course a colonoscopy. I am under Salazopyrine 4 tablets daily. I had my second baby and during pregnancy did not stop the treatment and I am doing great. Good luck everyone, be positive, do sports, and eat healthy food.

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Comment from: carrie, 25-34 Female (Patient) Published: December 16

I was diagnosed with SAPHO syndrome when I was 27 years old, my symptoms are swelling of my ankles, swelling on one wrist, swelling on the chest which has pushed my bones forward, chest pains, bad psoriasis and acne on my chest, back and face. I have had steroid injections in my chest bone, which helped for a little while with my chest pains. The only other medication available to me would stop me from having children, as I'm only 30 years old now I really don't want to take that sort of medication, therefore I just take loads of painkillers and get on the best I can.

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Comment from: Dawn, 55-64 Female (Patient) Published: January 16

With SAPHO syndrome I have had severe back pain for ten years and blisters occasionally on my feet and have to be careful in the sun as when it is hot I get a rash over my body.

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Comment from: kim, 45-54 Female (Patient) Published: August 22

I had very bad pain in my sternum area and blisters on the bottoms of my feet and sometimes on my hands. When the pain is bad, it feels like my whole upper body tightens up. It's very painful.

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SAPHO Syndrome - Treatment Question: What types of treatment, including medication, did you receive for your SAPHO syndrome?

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