Definitive diagnosis after three years - not PMR

Posted , 8 users are following.

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

7 Replies

  • Posted

    Glad that you got a definate diagnosis.  There is nothing like uncertainty and the waiting game.  All the best.  Pat
  • Posted

    Hi Dinah,I have just been referred back to rheumatologist because I had to come off steroids because of side effects.Have just started on 15mg methotrexate/week.Find I am nauseous day after dose;is this normal?
    • Posted

      Hi Gillian,

      Yes I did get nausea (and foggy brain) for the first few weeks. In fact after the second or third dose I got quite extreme nausea and was violently sick. But I was advised to increase my folic acid dose - ie take 5mg on Friday and Saturday, then mtx on Monday. Since then - and it's been about 5 months now - I have had no nausea at all.

      Some people take 5 mg folic acid daily, other than on mtx day, but I found too much of it gave me diarrhoea....

      So hold out for another few weeks - it definitely gets better

    • Posted

      Hi Dinah,thanks for replying and mentioning foggy brain -I was just putting that down to my nightly amitryptiline. I am on daily folic acid (except for methotrexate day)as my folate level is low.Will persevere though as due a phone call from rheumatology nurse in 4weeks so if still struggling will mention it then as I have a phobia of vomiting Fingers crossed it does not get to that.
  • Posted

    Hello Dinah, at least now with a definitive diagnosis the appropriate medication can now be prescribed to its potential to lessen any symptoms. But don't be too hard on yourself, I'm sure the preds will have helped to some degree with the inflamation. I wish you all good luck for your future. Regards, tina
  • Posted

    I'm sorry for the diagnosis you got, but I imagine you're feeling such relief in finally knowing what's truly wrong with you. Good luck with your treatment!
  • Posted

    Both steroids and NSAIDs can be used to help the symptoms of spondyloarthropathy, so the pred probably helped anyway.

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.