SAPHOS syndrome

[tunkkari]

Has anyone here with PPP been diagnosed with this syndrome? I have had shoulder/sternoclavical pain in various degrees of flare up now for 7 years now and I am sure it is this, no one up to now has been able to explain the pain or rectify it so this could be the answer, I am now getting pain in my lower back also. I have just eventually  had x rays done of my shoulder and clavical and hopefully it will show if it is this, I would rather it not be but at least I would have an answer. I am just wondering if anyone else has had this same pain or maybe had a diagnosis and if so how hard was it to diagnose?

[Sarahharris]

Hi, I suspect I may have the same thing.
I've got severe sternum pain which seemed to start as the same time as pustules/psoriasis on my hands and feet.
My Doctor diagnosed excema (sorry about the spelling) which I was not sure about so I booked in to see a Dermatologist.
8 minutes and £130 later he diagnosed Psoriasis.
Unfortunately he was not a talkative chap and I didn't get to mention my sternum pain.
However, I have been doing some research on the net and I almost definately have this condition to.
The pain is now radiating from sternum to shoulder blade and has started to travel down my left arm.  From what I can find out on the net an x ray does not always show the condition but an MRI certainly would as it would show up the inflammation around the joints.
There doesn't seem to be an awful lot of information regarding this and, what there is is mostly medical jargon.
I am really sorry to hear that you have had this for 7 years! Really hope that your Dr can get this sorted.
Out of interest, did your Dr say you may have it or did you look it up as well?
I am seriously considering going back to the Dr and telling him what I have found out about this.  I read that it's a rare condition but some clinical studies have been done with various drugs and they seem to have worked.
I hope they have found a solution for you and, as you say, knowing the diagnosis is half the battle really, at least then you can deal with it!
Could you let me know the outcome of your investigations, I would be most interested.
Good luck

[tunkkari]

sorry for such a late reply, havent checked in here for ages now! I found out about it by researching on the net, I couldnt help but think all the aches and pains I was having was something else and I was sure it was all connected, my mam had P with PA and PPP like me.  Drs dont really want to listen when you mention could it be connected, My Ultrasound showed I had an impingement on my shoulder but this wasnt present a few years back when I had a scan so It could be that it was through the swelling as my shoulder was bad but not as bad as it had been at the time of the scan. Now waiting for a hospital appointment to have surgery to it but before that I am going to mention to the consultant about sapho and try to get a MRI or bone density scan to see if it is that cos if it is surgery isnt going to help. Its now going into my other shoulder (no where near as bad) and my lower back is agony, hands and wrists also but thats probably  PA.

[tunkkari]

Also I found that there was an awful lot of people with ppp complaining of the same problem. Mine visibly swells when its in a flare up but by the time I get  an appt with the dr its not so bad, or they dont really want to look, next time Im taking a picture of it to show like some other sufferers advised.
 

[smose]

Hya tunkkari
You might find it useful to post on the clinic board - thats were most people who have PA hang out. I hadn't heard of Saphos but I would recomend you ask for a refferal to rheumatology.