It turns out I do have PMR after all!!

I posted back in November that, after a consultation with Prof. Dasgupta, he considered I did not have PMR and had not needed the pred. that i had been taking for a year. Luckily, he also ordered lots of further tests that I had not had before including a PET scan in case I had any other form of Vasculitis. Again luckily I had private medical insurance up to the end of the year and managed to get the PET scan done in December. I don't know if I would have been able to have it on the NHS as it is so expensive ( £1,250!!). The PET scan did show definite signs of active PMR, so I finally, after 2 years, have a definitive diagnosis, despite not having a typical presentation-e.g. no morning stiffness, and only 52 years old at onset. I would like to think that any of us could have a PET scan when diagnosis is so difficult.

Anyway, it means I am back here and trying to get better- I have managed to get down to 8.5 mgs pred.( the lowest I have been so far), helped a lot by the Amitriptyline that Prof. Dasgupta prescribed, but I have hit a wall now. The Amitriptyline has also helped my sleep no end. He is now going to put me on Leflunomide ( a DMARD) which, he says has better results with PMR than Methotrexate, which I took for over 6 months with no benefit at all, and should help me to taper the pred. I will have had the PMR for 2 years in March, and been treated for it for just over a year now. I am really hoping to see some progress soon !

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  • Sorry to hear you HAVE got PMR after all (as I wouldn't wish it on my worst enemy) but equally pleased that even the great are prepared to admit they got it wrong ;-) and acknowledge that there are atypical presentations! The literature does say that the younger patients often don't turn up with the same sort of presentation as older ones - and I am firmly convinced there are a lot of younger patients who are unidentified and given other diagnoses - including mental health problems.

    I was 51 when mine started and it did so with thigh claudication - the stiffness didn't appear until several months later and even then I wouldn't have described it as morning stiffness until much later. If I was stiff at the start it was all day and I couldn't lift my arms above my head for long either. Normal bloods - my ESR has never been above 7 even when I could hardly move - and CRP stubbornly normal too!

    I also got stuck at 8.5mg - with a few other side-events that necessitated a return to 15 and even above - but have steadily reduced to now 5mg since being put on Lodotra 16 months ago. I wonder if Dasgupta would consider that - it is commonly used in Germany for PMR and I know there is meant to be a trial of it for PMR in the UK. Not only have I got the dose down but since going on it have also steadily lost the weight I'd put on, first because I couldn't exercise pre-pred and then with Medrol, a total of about 30 lbs so far. You take it at 10pm, it releases early morning so you don't have to wait for it to kick in and they hope to see fewer side-effects with it. I think it is brilliant.

    £1,250 isn't that expensive for a scan of that sort really - there are lots worse (and they are done on the NHS when required)!

  • Suzy, welcome back! Although obviously I'd rather you didn't have PMR at all, you must be so relieved to finally have a definitive diagnosis, all thanks to the PET scan.

    Hopefully, you will fare better with your steroid reductions when on Leflunomide. I was at a meeting a couple of years ago at which Prof Dasgupta talked about the very good responses they were experiencing with this drug.

    Just so that you know what to expect, and in case you are not already aware, the literature produced by Arthritis Research states that Leflunomide doesn't work immediately. It may be 6 weeks or more before you notice any benefit and may even be as long as 6 months before you feel the full effect. If we learn anything from suffering with PMR/GCA, it is patience! All good wishes.

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