I know this is not a neurological illness but a dear sweet niece of mine has been told that she probably has this condition.

The specialist she saw said that Sapho Syndrome is very rare, but he couldn't give her much information about it at all.

She's having a bone scan next week which will hopefully confirm or not what's going on with her joints.

I was just wondering if anyone has heard of it, and if they have any information at all. She's done the usual web search and found a little about the condition, but she would also like to hear about personal experiences, if any.

Thank you... just in case.

I was diagnosed with sapho when I was 16 (am now in my 30's). It has mostly affected me in my collar bones and knees. It can be quite pain full in the collar bones. The bones aren't painful but all the muscles around there are affected and they are painful. I was told the only thing i could take was anti inflamatories but chose just to put up with it. The one thing that kept it away was acupuncture. Didn't help when I had it but kept it from coming back if I went regularly. panadol and ibaprofen help. Modern medicine can't really offer a cure. I'm on the natural health path now. I am looking into alkaline and acid balances in the body.

Nicc

Thank you so much for answering my post Nicc, and I'm so sorry to hear that you too suffer this painful condition. My neice who is in her early 30's, has it throughout both of her feet, so it makes walking extremely painful at times.

We're hoping and praying that if this does turn out to be Sapho Syndrome, that it doesn't spread to other areas.

I'll pass on the information that you gave me, so thank you again, and seeing this is your first post......... welcome to NeuroTalk.

Thanks for the welcome. My sapho moves slightly like sometimes it effects my ribs as well as the collar bones but thats not very often. From our research it is a common ailment in Japan and rare in the west. But I don't know how they treat it in Japan. I highly recommend acupuncture though. Good luck!

N

Just an update about my niece.....

The bone scan I thought was next week actually happened today, and here's what my niece wrote to me:

[The scan took over an hour and it gave me a nose bleed which I thought was a bit interesting.

The guy wasn’t allowed to tell me much only that "he could see the pain in my joints" and he was taking extra pics of my problem areas.

As he took extra pictures of my feet, knees, hips and arms I think it’s fair to say whatever it has invaded more of me than I was hoping. Although if it is Sapho Syndrome, it will most likely come and go from all of my bones and joints.

Thanks for posting the question on your site, with any luck some more info might come in.]

Thank you again Nicc, and if anyone else has any information about the condition, I'd be very grateful.

hi im 22 and was diagnosed with sapho syndrome at 14 i have the condition all over my body many people get the condition in there collar bone and knees but im quite a rare little thing and have it on 70% off my body. ive got it in my jaw bone also my jaw locks occasionally and i cant open my mouth very wide. also ive had to have teeth removed as they were inflamed and im positive its all to do with sapho syndrome. i have had all treatment available and it has yet to work on me. i just take strong painkillers every day including cocodamol 30/500 tramadol diazepam naproxen. in the winter the pain gets worse and i feel so miserable i cant get out of bed. im worried how this will affect me as i get older. if there is anyone who has this condition i would be interestead to no how it affects there life. i also have polycistic ovaries,hidradenitis suppurativa,irritable bowel syndrome,blepheritis,ive had 2 mini strokes in the past and have had depression. has anyone else got these things and sapho syndrome. id be greatfull for a reply thankyou kerry x

My niece got her bone scan results today, and the specialist was right with his diagnosis. She does have SAPHO Syndrome.

Her bone scan showed active spots in her feet, one toe, knees, elbows, shoulders, hips, pelvis and a small spot in her lower back, as well as a pretty impressive curvature of the spine..

She tells me that she's been been good up until the last few days when she ran out of her anti-inflammatory medications (Mobic), and now she's sore from the waist down and feeling very fatigued.

Neither of us know much about the condition, but she has to stay on anti-inflammatories for the next 7 weeks and then go off it the week before she goes back to the specialist for a re-assessment.

She also has a skin condition on her hands, which the doctor says is Pustulosis. This condition has only been recognised by skin specialists in the past 8 years or so, but considered to be part of the Sapho diagnosis. In her teens and twenties she also had rather nasty acne, which they now know to be part of this diagnosis. At least now the dermatologist will finally be treating it differently.

For anyone who doesn't know what Sapho Syndrome is, it's basically a chronic disorder that involves skin, bone and joints.

Included in the neme Sapho are the conditions synovitis, acne, pustulosis, and osteosis.

Treatment is usually with anti-infllammatory medicatons.

I am a 30 year old woman who was discovered to have sapho syndrome from the age of 8. It affected my right foot, distorting my toes and preventing a number of bones from developing properly, as a result i suffered with pain in this area at random or after excerise. It also affected my left left knee, which was often painfull to walk on. The worst part for me was that it was discovered in my left temple as as a result, it damaged the hearing in my left ear, leaving me with only 2% hearing ability here. It also caused issue's with my jaw and i have trouble opening it to full capacity. It was also affecting my left eye which would become very swollen and i suffered painfull headaches on the left hand side of my face. I was put on doxycycline from about 13 and although pain stayed with me till i was 20, i have been almost painfree for 10 years. My knee gets the odd pain but maybe only once a year, my foot has recently started to bother me in the cold, but my foot has much damage to it, after several ops and it appears to be as a result of the formation of my foot rather then sapho being present. I have been clear of sapho for some time, although i am to remain on doxycline (presently been on for 17 years)
as doctors fear the sapho will return without the medication. Doxycline has been a lifeline to me and has reduced so much pain and made life normal for 10 years.

Hi, my daugter has had this condition since she was 10 years old. She is sixteen now. She has it in her collar bone knees wrist and ankles. Sometimes it did not show up on the first scan but on the next one but she knows when it has gone to other parts of her body. She has had many drugs antiinflamtry, pamidronate, steroids. all worked for a short time but she was off school for 2 years. she is now on a drug called Inflixmab it is very expensive. But she has had nearly a year with hardly any symptons. Hope this helps.we live in the UK and is well known at her Hospital.

Hi has anyone tried Inflixamb My daughter who is 16 has been on it a year and had lots of pain free days. She was off school for 2 years before this as she was in to much pain. She has had many other drugs and nothink worked. until now . I know it is very expensive but we are in the UK. She also has methotrexate. She now has a better life. Hope this helps.
Louise