stiffness while reducing Prednisone

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I was diagnosed with PMR in July of 2017. I started on 15 mg of Pred and am now on 3. My reducing of Pred has gone very well, with very little pain. But now, at this low dosage, I am experiencing stiffness and pain in my upper back and neck, usually first thing in the morning. Is this because my pred at this point is too low, or is it that Pred has been masking other arthritic pains that I may have had, but higher doses covered it? I am 68. My arms hurt today as well, but then I was shoveling snow yesterday! I don't want to take any more pred than necessary. How it does one distinguish PMR pain from aging aches and pains?

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  • Posted

    I would be inclined to say this was a case of having overshot the right dose - I wouldn't think after barely 18 months that the underlying autoimmune cause of PMR has burned out and gone into remission. Less than one in five get rid of PMR in a year, a third take up to 2 years. 4mg is a very low dose - I would stick there for a while, 2 or 3 months, and then try 1/2mg again. It isn't a race and it is a shame to spoil what has been a really good reduction so far.

    Personally - if I managed to get to 4mg again I'd be happy to stick there!!

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    • Posted

      Thanks, Eileen. I have been reducing by .5 mg (being on each dose for about a month), and never had any pain at all. I've been on 3 mg for more than 2 weeks, and the pain is just manifesting itself now. And for the first time in months my CRP and SED are normal!

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    • Posted

      I agree w/ Eileen. My experience was virtually identical w/ yours and I Ignored the rumblings. I got to zero pred in under 2 years having started at 15 mg as well. Then the impact of a highly stressful contract pushed me into a full flare and it was time for take 2. Back to 15 and I've been tapering ever since. Now at 7.5 mg after another year and a bit.

      Slow and steady wins this race. Follow the DSNS and pay close attention to your body -- especially once you hit 8.0 mg. And pls oh pls, avoid refined sugar and wheat like its poison. That will make this passage much easier.

      Best to you, sweetie! You're far from alone!

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    • Posted

      Back up the 1/2mg and body-swerve a flare! The markers can lag behind - whatever doctors think. You have done so well - don't let anything spoil it.

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  • Posted

    I was diagnosed in the September 17 started on 20 mg down to 1 last month, but had a flare up which threw me as I hadnt heard of flare ups. I am up now to 6 pred which is managing pmr ok .My specialist said try not to confuse your pmr with ordinary age related aches and pains as pred will not help with them .I know its difficult and it is hard to sort out pain from pain but I think you can get to know eventually .

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    • Posted

      I disagree with your specialist re pred. and age related aches and pains. One of the few up sides to pred., I found, was that it enormously eased the pain of my long term arthritis which preceded PMR by several years.

      I'd be hard put to it to describe in words the difference between PMR and arthritis pain and would be interested to hear if your doctor offered any suggestions.

      Glad though I am to not have PMR symptoms any more, I think fondly of pred. when I wake up hurting from being still all night! Can't take paracetamol and codeine gives me constipation so I just keep moving. No meds. at all.

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  • Posted

    Upper neck and back pain along with sore upper arms which increases in severity over a few days are classic signs of a flare for me.

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  • Posted

    my bet would be this is the pmr, its very common for this to happen especially below 5mg

    getting down to 5mg is the easy part, getting from 5 to zero is the hard part and i know in my case it always went wrong at 3 or 2. 5.

    you need to ask your rheumy to let you go back up because if the meds dont stay just above the pain it never goes away

    consider giving up wheat also ...and caffeine, even just for a week to see

    good luck

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