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 !