When to blame PMR ?

Wow Heather, this could be me talking. I'm down to 5.5mg & also experiencing different pain but in the  front of my upper legs. I have no rheumatologist & my Drs pretty vague so like you bumble along on my own. I'm determined not to up my Preds again. I take Solpadeine at night so at least get a good night's sleep. Have you been doing anything different? I'm wondering if my pain is that I've stopped walking with a stick after nearly a year, so using different muscles. Hang in there, hopefully someone will have an answer.

I recognise what you mean and I sometimes have difficulty knowing what is aches and pains from what I have done and what is withdrawal. I have just reduced to 2mgs today but at 2.5 I was uncertain if I was having a flare, withdrawal or just general aches and pains. It's a fine line trying to decide. I stuck it out with the 2.5 reduction and eventually realised it wasn't a flare but probably as a result of overdoing it as my reduction coincided with a busy time. Are you perhaps doing too much or even something repetitive which can cause pain? It's difficult to know but perhaps you may be able to work out what is causing the pain. At this time of year we may be doing more gardening or looking after grandchildren. I am trying to pace myself again as I have had a busy spell and the fatigue sometimes catches up. I hope you manage to work out what is causing the pain and find that it may in fact be something other than a flare. I am almost 70 but still expect to feel like I did at 17!! 

I was so delighted to read yours and Marion's posts this morning, although I am absolutely not delighted that you are both experiencing these horrendous issues with PMR. It took over a year (the whole of 2016) of sheer agony before I was diagnosed with PMR in Jan 2017 and now I am, for about the third time this year, trying to reduce the Pred from 30 mg per day. I am now down to 22.5mg again,  which I shall reduce to 20mg in a couple of days, for four weeks before having more blood tests to ensure my bloods are still at the right count, the 'auto-immune markers' were originally at 42 as opposed to the normal healthy 5. To control the agonising pain, which is now mainly in my lower back, I take up to 8 Tramadol each day and having recently spoken to my a Brother in Law, who is a retired UK Pharmacist, I am now adding (when necessary) up to 8 Paracetamol every two hours. The side affects of the Pred are absolutely horrendous as you describe. It is very worrying and troubling to read that you have already been struggling with the PMR for over three years! I had read that it could take years to be 'well' again and I do know two older ladies who have each made an apparent complete recovery after 4+ years. I am (that should read Was) a fit and active 71 year old, who now feels as though I've lost my independence and can't raise the energy to do anything other than sit in a chair on many days of the week. It's so good to find this group and know I am not alone, that is thanks to my GP who introduced me to the www.patient.co.uk site on which I access this group. 

What you describe is typical of myofascial pain syndrome - it leads to the formation of pairs of trigger points on either side of the spine, in the shoulders, about waist level and in the lower back about where the baby's dimples are. They are concentrations of the same inflammatory substances that cause PMR when systemic (all through the body) but they are also to be found in the fascia - the transparent skin covering muscles you see in joints of meat or poultry, and then the fascia is inflamed and painful to touch. They can lead to muscle spasm. It is commonly found alongside PMR.

That is why it responds some to pred, especially at higher doses and then returns later as you reduce the dose. It is better dealt with directly - manual mobilisation by physiotherapists/massage therapy is one option. You often feel as if you having a flare after as the inflammatory substances are released but once they wash out of the body you improve. I found Bowen therapy helped and I have also had steroid or lignocaine injections which are also helpful. Once they are sorted Pilates or specific physio exercises often improve the tone of the back muscles and reduce the risk of it happening again.

And yes - PMR often gets the blame when it isn't directly the cause. But MPS is just a slightly different arrangement of the same sort of problems!