Patient Comments: SAPHO Syndrome - Symptoms and Diagnosis

Question:

What symptoms did you experience with SAPHO syndrome? How did physicians diagnose your case of SAPHO syndrome? Submit Your Comment

Comment from: cyclist414, 55-64 Female (Patient) Published: December 03

I had mid back pain as a teenager, then again in my 30s, and then a severe episode after menopause; getting to a treatment of zoledronic acid infusion took almost three years after a lot of CT and MRIs. It was mis-diagnosed as Scheuermann’s disease in my 30s. I self-managed most of my life with manual therapy, exercise other self-care and over the counter NSAIDs. SAPHO syndrome affected T4 through T8 and intervening discs. Recovery of function has been slow, I was looking for more information, and found this site.

Comment from: Exception to the rul, 55-64 Male (Patient) Published: May 22

I have joint inflammation and swelling from SAPHO syndrome. I have fusion of vertebrae C-5/C-7, and also T-4 and T-5. I also have pustules from top of head to bottom of feet. I have deterioration of ribs on both sides of chest, and also of sternum; and some more symptoms that I am missing currently.

Comment from: Female , 35-44 Female (Patient) Published: May 02

I started getting symptoms of SAPHO syndrome in my early 40s. It took nearly 3 years to diagnose. I suffered with clavicle bone growth, joint pains all over and stiffness, until I was put on sulfasalazine and hydroxychloroquine. I don’t get any skin problems, only at the start a flare up of boils. I am still having problems to settle it, possibly will be having to go on methotrexate.

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!

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.

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.

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.

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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