Polymyalgia Rheumatica

Wendy - good news indeed, and a welcome boost for those still struggling to see that light at the end of the tunnel. Hope your journey to that end of that tunnel continues to be straightforward, without any bends! Well done!

thanks mrs O for your good wishes fingers crossed it stays the way it is, I feel wonderful Wendy

Just dropping back in to this thread again to say I'm finally off pred (e/o December 13). I was tapering it off by 0.5 mg every 2 months after I reached 5 mg/day. So far no real problem and the slow taper seems to have paid off, but I seem to get some slightish intermittent PMR-like shoulder and hip pain that responds well to ibuprofen 400 mg once every couple of days. So that can't be PMR, right? Definitly no gelling or having to plan for how to put on my shoes.

I stopped alendronate in the summer and will be asking for another DEXA at the end of 2014 to see what my lumbar spine BMD is doing; it was Z = -1.5 in June 13. But this low BMD is more likely to be down to the long standing T1 diabetes. Hoping the increased weight training and calcium/D3 supplements will help.

That's great Steve - long may it last!

Difficult to say if the hip and shoulder pain is PMR - there is some thought that NSAIDs can deal with mild PMR. They didn't for me but I imagine it depends how much pain it is. Have you tried a good massage from a good therapist? I find it always helps as does Bowen technique (don't ask me how, it just does and MrsK will vouch for it too). You end up walking all wrong with PMR - and the muscles adapt to a position that hurts least at the time. No PMR means you are going to be walking and moving differently - and the muscles will have to re-adapt.

Does the discomfort vary with the weather? That is also a consideration ;-)

Eileen

Hi Eileen. I'm not sure about the weather. I doubt I could correlate them as both the weather during the last few weeks and occurance of the discomfort has been quite erratic. I'm on the south coast, so you can guess how the storms have been. A friend of mine is taking a deep massage course this weekend and I'm the test subject, so I may be able to comment after that.

I was personally aware of my change in gait after the PMR started. But for me, starting pred got me back to normal (for me!). I could and still can run laden with a heavy bag up 5 flights of steps near my home with no more than having to regain my breath for a minute.

Steve

Hi Steve, and welcome to the club of zero Pred members! Just a thought re your shoulder pain: a lot of people coming off steroids complain of ongoing shoulder pain and for many it has been diagnosed as rotator cuff syndrome. It is generally described as a sharp stabbing or jagging pain and is caused by long term use of steroids which can soften and weaken the tendons and ligaments around the joints, particularly the shoulder. A possibility for you perhaps?

Hi MrsO. I'm not too sure my shoulder pain would correspond to the description of rotator cuff. It is only in some quite small parts of one or two muscle groups around the shoulders, and some tenderness when pressing on that part of the muscle with my fingers. It really feels the same as before I started on pred, but much less severe. There's no sharpness to it unless I raise my arms upwards and I would not describe it as jagging, more annoying. Whatever it is, it's not causing too much problem. I can shoulder press at least 70kg, at least after taking 400mg of ibuprofen It might be post-pred aches that will go eventually.

Happy to join the club. Fingers crossed it will continue.

Steve - what you have now describes sounds very like what I experienced in the latter stages of PMR where I could press certain little areas, mainly around my shoulder blade and feel tenderness. I found a physio who understood PMR and carried out just gentle massage of the area concerned, plus heat treatment and ultrasound. It worked a treat. "Shoulder press at least 70kg" - in my dreams...with or without Ibuprofen!!!