having a flare up

This is my first time on the forum but I have been following it since being dx with PMR October 2014. Starting at 15mg I followed the usual stony path down to 7mg whereupon it all flared up again so back to 13. I used the very very slow method to get down to 10mg But now I have had an almighty flare and Dr. put me back to 15mg. Even this is not holding the PMR back as pain and fatigue etc is almost back to pre-pred days. Now I don't know whether to grin and bear it or put myself up to 16mg or17mg to control symptoms, which I am reluctant to do as it is difficult to get down again. Any advice would be hugely welcome. I join in all the praise for this forum and am so thankful for it.

3 Replies

  • Are you SURE it is "just" the PMR? It could be, and if it is you will need enough pred to manage the inflammation to get it under control. And are you doing YOUR part for management - avoiding activities that make your worse, breaking activity up into small bites with rests between? Was there anything else going on - a cold while you try to reduce can be enough to throw it all haywire.

    However - a lot of people find that using Bowen therapy helps a lot - sometimes it isn't PMR itself that is causing the excessive pain but something called myofascial pain syndrome (MPS) happening alongside the PMR and it can cause very similar problems, especially in shoulders and arms, hips and thighs. Left long enough your entire back can be affected. It wasn't until I had my back problems sorted out that I was able to reduce below 10mg without it returning - MPS is due to concentrations of the same cytokines that cause PMR except in PMR they are systemic (all through the body in the blood stream) but in MPS they are concentrated in trigger points that can be felt as hard knots in the muscles affected. That means higher doses of pred often help but as you reduce it returns. You can treat it with cortisone injections into the trigger points or by manual mobilisation working on the hard knots with fingers - I've used both and now Bowen keeps me upright. For some people Bowen on its own will work - and at least relieves some of the pain.

  • I've posted about the new excruciating pain in shoulder. x-rayed ok. Do you think this shows MPS? Babs x

  • Don't know - could be all sorts of things since x-rays don't show soft tissue problems usually. Frozen shoulder is a dx usually made by examination and then x-rays etc are used to rule out other causes of the pain. Bowen is said to be very good for frozen shoulder so get on with finding that practitioner!

    There are a few sites, depending on which umbrella association people register with - and then there will be some who aren't registered at all but who are OK.




    One I found in the Manchester area charged £40 - so I think that £60 you mentioned might be on the high side. I suppose you have to balance the distance/convenience against price.

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