Hi everyone. I've been reading replies for a few months now but have a few specific questions to ask. I'm an Australian.
Firstly my rheumatologist isn't 100% certain I have PMR as I'm apparently "too young" - I'm 47yo. It was my GP who first suggested that the pain I was in was PMR. That occurred about 8 months ago. My GP referred me to a rheumy but I had a long wait to see him so my GP started me on 10mg just to see what happened. My pain eased about 3 hours after taking my first dose, indact it was incredible. Previously I hadn't been able to move my legs out of bed without a lot of stiffness or support my upper body weight with my arms without weakness and a lot if pain, thus was especially bad after sitting still for lengthy periods. After I took my first tablet I played a computer game for over an hour then got up to go to the toilet. I was standing before I realised what I'd done! Just got out of bed, without pain! Incredible!
So I eventually saw the rhuemy and he seemed keen for it to be anything other than PMR. He looked very closely at all my joints etc but except for a torn meniscus in my knee (which coincided with the PMR onset) I was fine. My GP had asked if I had felt unwell just prior to the PMR pain setting in and I mentioned that one night I did feel a little fluey with a night sweat. But that passed.
Anyhow 8 months later I'm in Austria staying with my partner. I have tapered my dose down to 2mg a day... roughly dropping 1mg per month as instructed by my rheumatologist. All is going well. I'm getting lots of rest and having a 3 month break from the stressful job of relief teaching (high school).
Each morning it is only my shoulders that feel a bit stiff and sore but it's not terrible. The pain is only bad if I try to extend my arm and lift something at the same time. By about noon I almost feel normal. I haven't had pain around the tops of my legs in months, only my arms. When I was at my worst I could barely sit down... I had to kind of fall into chairs. Going to the toilet was very hard. But all that has totally stopped.
My main question is: is it ok to totally taper off Pred if I still have the current symptoms in my arms or should I just plateau at 2mg or 1mg until I'm totally pain free and back to my pre-illness state?
My medication supply will probably only just last long enough until I return to Australia. I have a script with me but I think it will be hard to fill in a foreign country.
I'm worried about needing to. Crease my dose while I'm here but so far so good.
Sadly my diet is hard to control as I'm on a tight budget and kind of have to eat what is cheap and what people offer me... which is too much bread! However I'm generally a healthy person and haven't gained much weight xceot for a bit around my tummy which used to be flat. Now it's kind of bloated all the time.
Thanks for reading this far.