PMR flare, advice appreciated please!

[peace_lover]

Hi folks, I am after some advice on how to proceed. After 10 months on Pred I got down to 10mg, stayed there for 4 weeks as per Rheumy taper and it was all feeling good. Dropped to 9mg in September and niggles started to return but they weren’t too bad so I ignored them. (I’m dropping 0.5mg every two weeks or so, 1mg is too fast for me). Then I dropped to 8.5mg and a major flare occurred, shoulders , neck, hips - all much more than the usual withdrawal flare, so I presumed I should have listened to my body 🙁 Really fed up as I was doing quite well...

For the past 5 weeks I increased to 12.5mg and then been decreasing slowly 0.5 at a time, but 11 is too low and now 12 is not managing the pain. I have pain in my shoulders like someone is gripping them tightly and it radiates down the top of my arms. This is a sort of pain I’ve not encountered before, even pre PMR diagnosis, it seemed to have morphed although I’m pretty damn sure it is PMR symptoms. Just to be clear I haven’t done anything like gardening or lifting anything heavy that might have aggravated it. I’m loathe to go up to 15mg as this is where I was a year ago, but have a feeling it might have to.

Before I try to get a Dr phone appt, which will take a while, any advice please?

Susan

[PMRpro Ambassador]

I develop that sort of pain due to myofascial pain syndrome (MPS) - and had done so before PMR appeared too. It responds to higher doses of pred but returns at lower ones. It is caused by the same cytokines as PMR except in PMR they are systemic, in MPS they are located in trigger points in pairs on either side of the spine, in shoulders, about rib level and in the lower back where the baby's dimples are or in the fascia, the transparent skin you will be familiar with from joints of meat or poultry. They cause the muscle groups to be tender or even to spasm - which can be excruciating. It is more common in people with PMR.

I have had steroid injections and manual mobilisation which is painful but very effective. I have also had needling techniques that help but aren't always easy to access. A good physio can be helpful. And I and jinasc got excellent results with Bowen therapy - but you DO need the right therapist.

You know this now - but please don't ignore niggles that reappear after a reduction!!!! Make a strategic retreat for a month and then try again! And now you are below 10mg, every 2 weeks is too often, even if it is only 1/2mg.

[peace_lover in reply to PMRpro]

Thanks for replying. I don't usually ignore niggles, but things were going so well.... I do have a good physio and don't mind a bit of pain if it yields results. She kept me going before I had the PMR diagnosis. But the 12mg I'm taking at the moment isn't cutting it, and wonder if going up 2mg for a few days might help. My Rheumy won't like it, but as he postponed my 6 month appointment by another 2 months he can't be too worried about me......

[PMRpro Ambassador in reply to peace_lover]

The best laid plans of mice and men ...

Sounds like a plan to me - you can try a higher dose for up to a week and still drop back to where you were...

[peace_lover in reply to PMRpro]

Thanks, I might just do that.

[daworm in reply to PMRpro]

Good advise..I’m so happy to be below 10 but the going is slow...fine bye me....8 1/2....for awhile I think..🙂

[Lee1945]

I was asvised to drop by 1 mg per month. Dropped to 6mg ok but when I dropped to 5 mg I was miserable with pain so GP told me to go back up to 6 where I am reasonably comfortable. I will not be dropping again for some time

Rheumy appt for mid-September has never arrived!!???!