Definitive diagnosis after three years - not PMR

I was diagnosed with 'atypical' PMR nearly three years ago. After two years I transferred to a different rheumatology department and was diagnosed with seronegative RA by the new hospital and put on methotrexate (now down to zero on prednisolone). At my last visit, however, the registrar thought my symptoms tallied more with spondylathropathy than RA (the mtx had no effect on buttock and back ache) and arranged a spinal MRI. Three days later he rang and told me there was inflammation in my spine/sacroilliac joints, confirming his suspicion.

Before I leave the group, I thought it might be useful for others with "atypical" PMR to see this post, given that it has been posited before that 1 in 6 in this group will turn out not to have PMR but some form of inflammatory arthritis.

My initial symptoms in the acute stage were easily confused with PMR - I woke up one day with the body of an 80 year old: extreme stiffness, inability to bend down and do up my shoes, painful buttocks particularly after getting up from chair or out of car. Night sweats, loss of weight, extreme fatigue. What I didn't really have was any shoulder involvement - though after about a year or so I had impingement in one shoulder which was agony. 

Apart from that, however, I never had any of the extreme, agonising pain that others seem to suffer. I would describe it more as debilitatiing stiffness. As my steroid dosage was reduced, I did have bad backache in my mid spine and at the sacroilliac level, and pain in my hips  most of which had bee masked by the steroids. 

When I was put on 15mg steroids I felt so much better - but it didn't feel 'miraculous' until a couple of days rather than a matter of hours as it was for some on this forum. But in retrospect I wish I had insisted on more tests before committing to long term steroid treatment as they might have picked up the spinal inflammation earlier. I realise now that my rheumatologist's impatience to get me off steroids was not just because the medical profession worry about the side effects but because it would enable an alternative diagnosis. 

Anyway it is in some ways a relief to have a definitive diagnosis - though to be honest I envy those of you with PMR: at least you have the hope of it eventually disappearing!

1 like, 7 replies