Patient Comments: SAPHO Syndrome - Treatment

What types of treatment, including medication, did you receive for your SAPHO syndrome?

Comment from: Hlavelle, 35-44 Female (Patient) Published: December 31

I was diagnosed with SAPHO 17 years ago. I have taken sulfasalazine and Daypro. I have decreased my dosage for both the sulfasalazine and Daypro. I have not been able to discontinue the use of either medication. Some SAPHO patients are able to get off all medications.

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Comment from: red18red5, 35-44 Male (Patient) Published: January 23

I was diagnosed with SAPHO. I had pain for long periods of time. A pamidronate infusion worked for me, I have been pain free for over 3 months now. The doctor says if pain returns, to just book another infusion. I took a month after the infusion to notice the benefit, so be patient.

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

Over the years I have been prescribed many different pain killers and had acupuncture in my spine, none worked. After the diagnosis of SAPHO syndrome I was given hydroxychloroquine and doxycycline and both gave me a rash. A year ago was given intravenous pamidronate and had been pain free since, back pain just started to return so I have just had another pamidronate infusion.

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

i have tried Humira and methotrexate . I also have tried Celebrex and other nonsteroidal meds. The only relief I get is from prednisone (steroids). I am currently on a low dose of 7 mg. My doctor tried to take me off slowly by going to 5 mg and within a couple days the pain was very bad again. I am now back on the 7 mg (it has only been one week). My pain is still bad, but it's getting better. I always have pain, but without the steroids, the pain is unbearable. I do not like to take pain meds at all. Most make me sick or just feel drugged.

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SAPHO Syndrome - Symptoms and Diagnosis Question: What symptoms did you experience with SAPHO syndrome? How was it diagnosed?

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