Unexplained pain in the mornings:

[Sally_Bones43]

I recently began tapering from 15mg after my PMR diagnosis down to 10mg over a couple of months, following the usual NHS protocol, but on 10mg I began to get pain in the upper back between the shoulder blades, and in my arms, upper and lower, and especially on the right, and sometimes behind the knees, again in the mornings. This is more of a burning sensation in the muscles than the stiffness that I had before treatment started. After several days of this, on advice from GP I increased back to 12mg/day, but that did not stop the pain, so contacted surgery again and was advised to go back to 15mg for 3 weeks and begin tapering once the pain was under control.

The first few days it seemed that this was controlling it, as I felt really well, and I was getting ready to start the tapering again, but the pain in the mornings has came back after about 5 days: It starts soon after I wake - I usually read in bed for a while before getting up to make coffee, and it begins then and increases through the breakfast period becoming quite uncomfortable, but not unbearable. It is much better if I am physically active, and worse when I am sitting around or at the computer.

Yesterday I took paracetamol and the pain dissipated during the afternoon. It is back today, and I plan to sit it out and see if it dissipates without paracetamol. I wondered if it might be postural. Alternatively may be from doing too much - but I rested yesterday, and the pain is quite bad this morning. Because I feel well and strong when the pain is controlled, and better when active, I may be overexerting myself. But I have only been doing a few stretches in the morning (balance, breathing and pelvic floor), walking and some gardening.

I am not sure how to proceed now. I will need to renew my prescription soon anyway, so will contact the GP surgery to do that, but getting an appointment is not easy. Any suggestions?

This forum is a godsend - Thank you! We get almost no information about our condition and the consequences of prolonged steroid treatment from the doctors. I have yet to be offered a bone density scan, though I have been prescribed Calci-D. It is quite frightening to realise that this may last for several years, and that it is likely to be a roller-coaster ride! I have until now been exceptionally well and active for my age, so I do feel a bit resentful!

[PMRpro Ambassador]

My personal suspicion is that the PMR was recognised fairly early and now the underlying autoimmune disorder is actually increasing plus your tapering has been a bit haphazard, and has allowed a flare to develop. Then it becomes more difficult to get things under control.

Bear in mind that the inflammatory substances that cause the symptoms in PMR are shed early every morning at about 4-4.30am and then set out to cause inflammation around the body because the antiinflammatory effect of the previous day's dose of pred has worn off for many people by then. Then you take your new dose of pred - and it takes about an hour to get into the system and start working. In the meantime, inflammation has been building up so the symptoms worsen. Eventually the pred gets to the coalface and can start to work. The more inflammation, the longer it takes and then it takes some time for the stiffness to wear off.

I think you probably need to start from the beginning - and if 15mg isn't quite enough, maybe with a bit more. And then after at least 4 weeks, possibly longer, you can start tapering slowly - not more than 2.5mg at a time and preferably at at least 3 to 4 week intervals. PMR can't be hurried!

And your light activities - gardening always rings alarm bells! It is far too easy to do more than you think and lots of people end up stiff the next day - and sometimes not until 2 or 3 days later when they develop DOMS, delayed onset muscle soreness. which will be more and worse than you expect as your PMR-ravaged muscles protest loudly,