Patient Comments: SAPHO Syndrome - Treatment


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

Comment from: ACS, 35-44 Female (Patient) Published: February 13

I was diagnosed with SAPHO syndrome in fall 2016. Since then I have been on Humira, Cymbalta, Lialda and Uceris. I was pain free for 17 months, now I live in constant pain so severe I can't play with my kids. I need to find something else.

Comment from: Tuppertea, 55-64 Female (Patient) Published: July 12

I have been diagnosed with SAPHO syndrome since my 30s after a barrage of tests that found no reason for my symptoms. I was put on medication but did not like the risks so chose to stop and manage the outbreaks of pain in my neck, back sacroiliac joint, some chest joints (ribs), knee, etc., with Brufen but as I am ageing I feel this may no longer be enough. I have a finger on my right hand that will break out in a blister and when it goes it leaves a scar (gets bigger each time) that people mistake for a burn. I have psoriatic type lesions that occur around my nape, upper back, shoulder area, etc., and these are irritating. I have now developed diabetes type 2, hypothyroidism (had my thyroid removed a few weeks ago due to benign tumors), benign tumors in one kidney, my liver, and have had some lipomas removed, so it does affect multi systems in time. My daughter now shows early signs of it. No general physician I go to has heard of it so I cannot find anyone to treat it seriously as my original physician has long retired.

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.

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.

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.

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.

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.

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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