SAPHO Syndrome - Treatment

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

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What is treatment for SAPHO syndrome?

Treatment of patients with SAPHO syndrome is directed toward the individual symptoms that are present. Generally, treatment involves medications that reduce inflammation in the particular tissues affected. Examples of medications that are used for inflammation include nonsteroidal anti-inflammatory drugs (NSAIDs, such as aspirin, ibuprofen [Advil, Motrin], and naproxen [Aleve]) and cortisone medications (either in the form of topical creams, tablets, or by injection into the involved area). Topical cold applications can also help reduce inflammation in some tissues. For patients with persisting joint symptoms, both sulfasalazine (Azulfidine) and methotrexate (Rheumatrex, Trexall) have been tried with varying degrees of success. Newer biologic medications, including infliximab (Remicade), have also been used successfully.

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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: 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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