I posted a question regarding my husband’s chest pain about a year ago. He had been diagnosed with PMR, then shortly after GCA 5years ago. Most of his pain had settled, apart from chest pain, and I asked if anyone else had this sort of pain.
Well, the chest pain continued, and finally, finally, my husband recently got a PET scan, as Tonylynn had suggested. That was quite an ordeal as he had to drop from 9mg to 3mg of Prednisolone for a week before (the Radiologist’s rules). The result of this PET scan is that he has just been diagnosed with SAPHO Syndrome. They are going to try him with a DMARD, but in the meantime carry on with 15mg of Prednisolone as every time he comes below this dose he has a flare.
Does anyone on here know anything about SAPHO, or been diagnosed with it?
Not much information on the internet!
Many thanks
Written by
Nidgey
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Hello Nidgey - l’m so sorry to hear about your husbands diagnosis - as you say there’s not much information on the internet - l found this link in genetic & rare diseases.
Thank you. By the way I am not convinced about the diagnosis. He does have a new slight rash on his cheeks which looks to me like rosacea, but no pustulosis. Now he is getting bad groin/ hip pain - I wonder if that is synovitis?
How strange - I was looking it up just recently because someone said they had it but I can't for the life of me remember which forum it was on. This link above mentions hip involvement - it seems to vary a lot and there are a lot of overlaps with the spondyloarthropathies - which may mean one of the anti-TNF biologics will work. It is a bit of a heavy read, especially the start, but the section on treatment seems not too bad to me (but I'm really not a good judge, it mostly makes sense to me ...)
It IS considered rare - but it is thought the incidence is very underestimated and within the regions where it is found the figures make it not so rare - it is mostly found in Japan, northern and western Europe and far fewer cases in the US and USA.
Thank you so much for taking the time to find these articles. The consultant did say early on in his diagnosis that he thought there was some sort of spondyloarthropy going on, but could never identify anything specific. There was no sacroiliitis at that time. The SAPHO has been diagnosed following the PET scan which showed ‘increased uptake around the manubrio external angle around his shoulder girdle’, the clinic letter said. But it seems to me, from the articles, it could be undifferentiated spondyloarthropathy rather than SAPHO syndrome, do you think? Not that I’m sure it makes any difference!
The consultant also said there was uptake somewhere around the hips so I must ask him exactly where. Thank you again
I would have thought there would be uptake in those places with PMR too but obviously it is slightly different. A SAPHO diagnosis requires other manifestations - does he have any of those listed? As I understand it - synovitis alone isn't enough and that would parallel PMR.But the uptodate articles says
"Anterior chest wall involvement is seen in 65 to 90 percent of patients and considered highly characteristic of SAPHO syndrome; areas typically affected include the sternocostal and sternoclavicular joints as well as the costoclavicular ligament [28-31]. Soft tissue surrounding these areas may develop erythema and swelling. The affected areas may be tender on examination."
so I assume that bit is of particular interest to them and relevant to the SAPHO diagnosis. And they haven't mentioned everything ...
Either way - if it is a spondyloarthropathy the chances are they will try an anti-TNF biologic. I had a PMR friend on the forums from Kent whose diagnosis intitially was PMR, then signs of GCA appeared and confused everyone including Prof Dasgupta - until she persuaded her doctor to refer her to Prof Mackie in Leeds who picked up on a comment about night back pain and sent her for an MRI - confirming ankylosing spondylitis! Its effect on her neck had led to the ?GCA symptoms - not that there is much difference in the cause, it is reduced blood supply either way, just different reasons for it. Naproxen helped temporarily until a referral was sorted out to a more local specialist to deal with the anti-TNF prescription. There are 5 of them, patients differ a bit in their response so they try them to find the best for the particular patient.
Hi so sorry to read your post and hope issues get resolved ASAP. Unfortunately I can not help as my tapering from 15 mg of P. has so far been very straight forward and now down to 6mg. Wishing your husband improved health soon.
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