Hi, it must have been a year or more since I wrote a post. I had reduced from 15mg to 10mg and was on track to reduce to zero by May this year. Had a few flares on the way but took my last 1mg on 12 May. Even before I came off the pred I was feeling some pain and stiffness in the right hip and thigh but my GP said it wasn't PMR because it didn't affect the right side. So I continued the reduction to zero. That's 2 years since I started on pred.
Two weeks later with no pred I'm limping on one side and it's affecting both shoulders. My GP has forever been pushing me to come off ASAP. Maybe I came off too soon. Should I start again? I'll get no support from my GP, but then I never have. Thank God for this site and the support you give.
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trebor65
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"my GP said it wasn't PMR because it didn't affect the right side"
While PMR is generally bilateral - when it starts up again there is likely to be one side that is worse than the other. And now you say both shoulders are affected.
It is all very well GPs going on about getting off pred asap - but the cause of the PMR isn't listening and it is the boss, however much any doctor may object.
You haven't posted in a while you say - do you still read? This work has been discussed a fair bit recently:
where evidence shows that the average duration of PMR is 5.9 years, something the charities have been saying for several years. Where on earth they get the idea of 2 years is beyond me - I have met a few people on the forums who got off pred in a couple of years, but that is from hundreds. And it has been said for some years that the people off pred in that time are at a higher risk of a recurrence, often needing to go back to the beginning.
I assume you have a left-over stock of tablets? Why not try 5mg for a few days? If it makes little difference maybe try a bit more - but if it does, reduce a bit and see how you get on. I don't know how slowly you were reducing at the end but the chances are that the dose before where the first niggle appeared was holding the inflammation. If that is below 5mg your GP is silly if he objects - and there is some evidence in that link to show him.
This is my reply to all of you who kindly replied to my post.
I saw my GP last friday, prepared for a battle but to my surprise he made out a prescription for pred with no bother at all. I started on 5mg and the stiffness has reduced, so I guess the PMR is still active.
Incidentally, I looked up various guidelines on the treatment of PMR and they all seem to say that the expected duration is 2 years. If I've read it right.
The BSR guidelines state 1 - 2 years as the treatment period,
The Arthritis Research leaflet says 2 years or more
and the Bristol paper states a treatment period of 2 years.
A bit different from the 5.9 year duration stated in the pain management paper you referred me to.
It's not surprising then that GP's are at variance with what's happening in practice. Do you think it possible for the BSR guidelines to be revised to take account of the latest findings. It might reduce the pressure on a lot of us to get down to zero too quickly.
They base their treatment aim on 2 years MINIMUM - but all of them say the treament/tapering pattern must be adjusted to suit the individual patient as all present so differently.
“I had reduced from 15mg to 10mg and was on track to reduce to zero by May this year. Had a few flares on the way but took my last 1mg on 12 May. Even before I came off the pred I was feeling some pain and stiffness in the right hip and thigh but my GP said it wasn't PMR because it didn't affect the right side. So I continued the reduction to zero. That's 2 years since I started on pred”
Oh dear another doctor who thinks PMR only lasts 2 years, it doesn’t..... most recent studies agree it lasts near 6!
Unfortunately your few flares on the way, and now your pain (albeit one sided) shouts to me “look at me, I’m still here”
Suggest you follow PMRpros advice and see what happens. And try and educate your doctor along the way. Good luck with that! 😉
Nothing to add to the Two Ladies advice except 'follow it'... all a little too hurried coming off pred so quickly and you are now suffering - no surprise really. ATB.
Best wishes
Morning
Has your GP been reading a text book & expecting you to follow the It Only Lasts Two Years Myth!
GP’s in the main don’t understand PMR & just how awful it is, then as they hand you the First Prescription for Pred they start warning you, you’d better get off it PDQ! Then the whole time you’re on it, blame anything else on The Steroids!
I am amazed at the GPS advice they can't feel the pain. My gp seemed to let me get on with it after a referral to a rheumatologist which has yet to happen after a year. I get more help from these forums than any medical help. Why do they think we are just complaining. I wish you well and hope you get the help you certainly need.
From my wife's experiences and from reading accounts on this site, it sure seems that there are a lot of misinformed professionals regarding PMR. I would recommend seeing a rheumatologist who puts a timetable on you for stopping prednisone. My wife's first rheumy tried to get my wife to taper down to zero after 8 months. Never had a chance!
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