Returning PMR symptoms
Posted , 10 users are following.
Posted on behalf of dorothy89764 • about 16 hours ago
Hi There
I was diagnosed with PMR 3 years and 3mths ago.started on 20mg and over the 3 years reduced pred down to 1mg. Took some juggling. I stayed on 1 mg for appox 1 mth without pain. 16 weeks ago I took my last tablet (maybe). All was good for a few weeks but the mild to not mild muscle soreness has returned. I take Ibuprofen in the mornings and at night so I can sleep. The ibuprofen manages the pain, but it is still there just under the surface. Can this still be withdrawal from the pred? The soreness I experience is not as bad as when I was first diagnosed.
1 like, 18 replies
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Handbrake dorothy89764 • about 15 hours ago
Hi Dorothy,
I had a similar experience the first time I got to zero so started prednisolone at 1mg until pain disappeared then dropped to 1mg alternate days, then every 3days and so on until back to zero. If it is some PMR lurking in the background it is better to address it and Ibuprofen will not
dorothy89764 Handbrake • about 14 hours ago
Thank you very much for confirming what I thought I might need to do. I will follow your instructions and hopefully next time I may be able to stay off them. Did it work for you the second time around? I'm An Australian on assignment in Tonga and there is not a specialist here that I could have spoken to. Malo
Handbrake dorothy89764 • about 13 hours ago
Hi Dorothy, it's still early days but been off again for 12weeks. I am very mindful that the PMR can return at anytime so keeping a hold of some prednisolone is reassuring, I'm also introducing more alkaline foods in my diet and reducing acid drinks and foodstuffs. I Definately feel better for
dorothy89764 Handbrake
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Well I strated back on the presidone 1mg and it didn't touch the pain - I persisted for over a week and then uped the dosage. I'm now taking 5 - 6 mg a day and it is just dealing with the PMR systoms. I'm think I shouldn't have waited so long to start taking the predidone again. Buggar, back to where I was a year ago. I will wait until all the pain nicks off before I start a tapering process again. Round two - Lesson learnt, don't ignore PMR or it will come back with a vengence...
EileenH dorothy89764
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Handbrake dorothy89764
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judy50581 Handbrake
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Handbrake judy50581
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yes it's a tricky one getting things right between prednisolone withdrawal and PMR symptoms 🙈 If you are still having pain then perhaps the 1mg drop is to much for you...you could try just dropping to 1.5 instead of one. Also I found after going to see a Physio I had unknowingly changed my posture ...holding shoulders tense etc and balance wasn't the best it could be so I'm working on that! Got one of those wobble discs for balance and strengthening that core! It's brought me a long way 😀
EileenH judy50581
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Many doctors will try to tell you that 1 or 2 mg isn't doing anything - they are wrong. There are more than a few patients who were doing well on even as little as 1mg but within a few months of stopping altogether it was back and needed a return to higher doses to get it under control. The side effects associated with 1mg are near enough zero so there is no hurry.
judy50581 EileenH
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EileenH judy50581
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The sed rate remains low as long as there is no longterm inflammation present in the body (unless you are one of the 20% who don't show this response at all). Every morning the autoimmune disorder that causes the symptoms we call PMR causes inflammatory substances to be shed in the body - that is why we need a daily dose of pred, enough to combat the amount of them being made. As long as you have found the lowest dose that does that then the sed rate should remain low - the pred sorts out the inflammation quickly and little damage is done so the sed rate doesn't rise. At some point of a reduction you drop below that dose - if it is just a small amount it may take some weeks for the inflammation to build up to the level you notice again. That is why we say go slowly - reduce fast and you shoot past that end point, whether it is going in big steps or reducing every week or so. Then you have no idea where exactly the right dose is, have to go back and try again. To add to the confusion, the sed rate isn't reliable in all patients: sometimes it doesn't rise again after being on pred - noone knows why, it is just so.
So if you are lucky, yes it has gone. But the doctor can't tell by looking at your sed rate - if you are on pred it SHOULD be low and if it is rising you are possibly developing a flare although it is very non-specific and will rise with a cold or an injury so isn't very accurate.
iellen32 Handbrake
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EillenH. 😊😊😊🌸🌸🌸
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dorothy89764 Handbrake
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Handbrake dorothy89764
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Kindest regards
Patty
paula63201 Handbrake
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Am doing slower than dead slow as I wind down toward 1 mg. For a couple of weeks have been at 6 days of 2 and 1 day of 1. Have had a cold for 2 weeks, so have not continued the taper until I feel OK and not as fatigued, due to lack of sleep.
Handbrake paula63201
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