No pain no gain!!!

[Griggser]

So I saw my rheumy today and we have agreed a plan! Basically I am not getting the relieve we both think I should from 18mg / 19mg of pred. I am still on half days at work and still really fatigued with quite a bit of hip pain, not sleeping well etc etc. I have been reducing from 20mg over the last 2 months on the dead slow method. Just to recall I had been down to 14 mg and went back up as pain had increased. Anyway I asked if he felt I had the right diagnosis of PMR and he agreed that it may be the case, although I did have a high CRP (64) result and responded well to 15mg of pred initially. latest blood are all normal. Now the plan is to reduce to 15mg tomorrow then in 2 weeks down to 12.5mg and in a further two weeks down to 10mg. This should confirm if the steroids are actually doing anything for me or not, i.e. more pain on reduced steroid should confirm if it's PMR or not. I am happy with this approach but not particularly looking forward to any levels of pain that I had before I started the steroid journey. In addition he is arranging an MRI scan of my hips.

[11caroline29]

Hi Griggser. Sorry you having such similar problems to me reducing steroids. I presume the Mycophenolate did not work for you either? I struggled for 6 weeks on reduction from 17.5 to 15. So have decided myself just reducing 1 mg per month. GP agreed. After starting on 40mg 13 mths ago I am now only reduced to 14mg. Been a long battle to get to this stage. I doubted my diagnosis of Pmr & GCA too but my Neurologist is very confident. I am disappointed too that I am still in a lot of pain but I have Fibromyalgia and steroid induced diabetes too. Chronic fatigue and insomnia too. I keep being told I will feel better when I reduce steroids further. Still waiting on that one so been pushed into ill health retirement at age 50. Best of luck with your steroid reductions . It is some comfort to me that we are not alone with this journey.

[Griggser in reply to 11caroline29]

Sorry to hear your still in pain and all the other associated ailments. Retiring at 50 is a blow I'm sure. My boss has asked me to speak with HR when I next visit him in Paris this September to talk about any plans they can put in place including retirement options, I'm 59 so not quite what I want but I'm also not sure if working actually makes things worse. It's just getting your head around giving up work which for me is a biggy!

Well I only took 15mg yesterday and already I can feel the pain in the hips increasing! Let's see how it goes with two at 15mg?

Hope you start to see some improvement soon.