First diagnosed March 2016 started on 20mg. Reduced too quickly to 11/12mg by July - lack of advice and guidelines at the time. Thank goodness I found this site!
Having struggled for past few months with dreadful shoulder pains and immobility I realised that I had lost control and my PMR was flaring. I had been trying the 'dead slow' reduction method with some success (only got to 16mg) but everything seemed to flare before Christmas and by early January I was truly fed up. Upped my dose back up to 20mg - now in my third week - and big improvements but now back where I started when first diagnosed last March! Worrying about steroid affects and couldn't get a NHS rheumy appointment until September so went privately.
Agreed to try 1mg a month reduction and see how it goes. My issue is my liver function tests. They have been extremely elevated throughout and even the rheumy had not seen an Alk phos level of 772! I had a liver biopsy last March which proved my liver was healthy - thank god - but they still don't understand my levels. Rheumy thinking about trying me on Methotextrate or Azathioprine once he has done more bloods and spoken to the liver specialists. He appreciates I am struggling to reduce steroid dose and isn't happy with me remaining on 20mg for too much longer. I at least feel someone is trying to help me and seems interested in managing my condition.
Does anyone have any similar experience and what are thoughts and opinions on the alternative drugs? I have read a bit about methotextrate and its varying degrees of success but don't know about the other one.
comments and help much appreciated as ever!