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: Kirsty, 35-44 Female (Patient) Published: January 20

I was diagnosed with SAPHO syndrome 12 months ago after spending a year in unbelievable pain while different tests were run and treated for a variety of different diagnoses. When SAPHO was diagnosed I was put on methotrexate. This stopped the pain but made me really sick, no appetite, and massive weight loss. I stopped that in April, and now I take natural supplements that work as anti-inflammatory, I live on an anti-inflammatory diet, and I exercise daily. The natural inclination when you have chronic pain is to protect the area that is a problem. I did this for 18 months and by the end of it I could no longer move my arms, turn my body, lie down, and every single breath was agony. Now I train three times a week doing stretch and strength training, I walk every day and am just about to start Pilates which I believe will help further. I still get flare ups but they are now much less painful and last only a day or two instead of months on end, and usually just a basic pain killer will help instead of heavy duty pain killers and anti-inflammatory medicines.

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Comment from: alive again, 25-34 Male (Patient) Published: March 09

I was diagnosed with SAPHO syndrome when I was 19 years old. I had horrible pain in chest, back and leg joints, and was treated with methotrexate and a lot of stuff. The only medicine that made me walk again is an injection called Enbrel. It's very expensive but by all means possible if your suffering from SAPHO consult your doctor about this injection. I wish you all best of luck.

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