Advice please?

Hi Folks

Have read your posts with great interest over past few months. I am a 65 year old man, diagnosed with PMR last August. Started with neck pain, then hips, shoulders, hamstrings till entually most of my body had joined the PMR party. GP and I were tending towards Fibromyalgia but fortunately Rheumatology suggested PMR and pred. Started on 15mg of pred and went from chronic pain and stiffness to fully functioning within 1 day - it seemed miraculous!

I followed the rheumatologist recommended taper with 4 weeks at 15, 12.5, 10, 9, 8 etc, until 5 mg. I was on my 6th week of 5mg pred thinking ahead to next reduction, when neck pain returned, then shoulders and arms. I increased to 6 mg, still pain, then 6.5 mg, still pain and currently at 7.5 mg but still not totally pain free. Should I bite the bullet and go back to say 10 mg? I am still active- walking and some kettlebells- determined not to let this condition define me or defeat me! I have noticed that I am a tad more fatigued recently though. Thoughts kind people?

8 Replies

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  • If it were me I'd go back to 10mg, get it all properly under control and then reduce again. Though having said that - how long have you been at 7.5mg? Maybe you would get away with just a few days at 10mg and straight back to 7.5mg. I'd also recommend a bit less kettlebells for a week or two until the pain is gone! Or at least, lighter...

  • Hi

    Thanks for such a prompt reply. 2 days at 7.5mg and as pain still there, I think I will take your advice and go back to 10 mg. Having read all the posts, I am well aware of the need to reduce slowly now. I was so pleased to be at 5 mg and apparently ready for next reduction, but clearly the PMR is still active. Kettle bells are on hold just now!! Have already dropped down from 10kg to 8kg. Cheers!

  • 8kg?????? Some of us struggle to lift a kettle never mind an 8kg kettlebell!!!!!

  • I am now able to lift the kettle, PMRPro - was about to celebrate - am now thinking I should go and weigh it..........

  • That made me laugh! I guess that I am on the "lighter" end of the PMR spectrum and was pretty fit before it struck. I feel lucky to be back to almost as active as before and seem to tolerate prednisolone quite well, apart from chunkier waist line!!

  • When I cut carbs it was the waistline that lost the padding first. I think that was the worst bit of the weight gain - I'd never not had a waist before! It seems to be the standard shape these days - if I get jeans to fit my hips they are about 2 inches too big on the waist!

  • I have to admit I am a bit jealous of you. I'm 10 years younger then you and was diagnosed one month after you and have been struggling to get below 11 mg for a while now. But I think you've got some good advice here. I particularly liked the idea of going up to 10 mg for a few days and then dropping back down to 7.5 mg. Good luck to you.

  • Thanks. Good luck to you too!!

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