Are we ever pain free when we have PMR
Posted , 14 users are following.
i am reducing by using the DSNS method I have got down to 7mg. When I was first diagnosed and was put on 20mg for three weeks that was the only time I can honestly say I was completely pain free.
Since then I have had niggly pain on and off all the time. I do think I have quite a high pain threshold, so I just get on with it. But what I can’t deal with is the stiffness in both shoulders, I can’t blow dry my
hair find it difficult to lift both arms. I did go back up to 15mg for two
weeks with no relief. I wonder if it is a rotator cuff problem, although my scan did not show anything up. I have heard you can have your shoulders stretched under a local. Can anyone please let me know what your thoughts are. I know I have had PMR for only 13mths a lot less than a lot on this forum who have had it for many years. I can deal with the pelvic pain and down my legs, by resting, but my shoulders is getting me down.😢
0 likes, 14 replies
Michdonn margaret89358
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margaret89358 Michdonn
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BettyE margaret89358
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I was pain free four hours after taking my first 30 mg. dose and, following the reduction schedule that my GP suggested, until got to 10. Went back to 12.5, no joy. Increased to 13 and pain went. Stayed there for 4 weeks and then was able to reduce steadily, pain free, until I got to 4.5.
I finally took my last dose after three years experiencing several glitches along the way. Was clear for five years and then PMR symptoms returned. Second round was more difficult.
Happy to PM you my full record if it would help but the conclusion I drew was that there are no rules and you have to be prepared to continually adjust the dose and listen to your body which is unique.
Michdonn BettyE
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margaret89358 BettyE
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rachel24455 margaret89358
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Thank you for this - I just can't find the right dose so am heartened by this??
Michdonn rachel24455
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margaret89358 rachel24455
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Elijo margaret89358
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My thoughts are to go back to the amount that stops the pain, stay on it for a while, and don't be in a hurry to reduce too quickly; give it time for the inflamation to subside. Don't worry about it being a larger dose, you will eventually be able to reduce once the inflamation begins to subside. Good luck! Elinor
Twopies margaret89358
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After 1 1/2 years of pmr, I am currently at 5 mg. Tuesday was my mother-in-laws funeral where I stood in the receiving line for 2 1/2 hours and then all the ceremonies afterwards. Wednesday I had my first physical therapy session for what has turned out to be tendonitis. Yesterday I walked 5000 steps (my limit) and did my isometric pt exercises. Today I can't move. Stiff and sore all over, mostly in my legs and upper arms--haven't had that for a very long time. No idea why all this stiffness and soreness didn't appear Wednesday after the funeral on Tuesday...anyway, I'm gonna give it another day; if it isn't better tomorrow, I will go up 1/2 mg.
wanted to add that with my pmr, I've never been totally pain free. I have stiffness and soreness in my hips and groin especially in the mornings and my physical limits are very small indeed. fatigue is an ongoing issue. However, I'm using the dsns method; my gp (who is wonderful) just told me that there is no hurry to get off pred when you get to 5. So I have lots of hope that I will get there eventually; right now, though, I think it's safe to say my pmr ain't gone by any means. Best wishes to you; hang in there!
margaret89358 Twopies
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EileenH margaret89358
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It does sound as if your shoulders might be due to something else on top of the PMR - but if there is deep-seated bursitis it might take some time to go away and so appear as the dose goes down. But if your shoulders are stopping you raising your arms - it needs investigating. However - even using the DSNS approach you are not reducing relentlessly to zero. You are looking for the lowest dose that gives as a good as result as the starting dose did or near enough. You sound as if you have overshot - and to be honest to be at 7mg after 13 months is pretty good. Your aim is that you don't feel worse at the end of a taper step than at the beginning.
margaret89358 EileenH
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rusty49 margaret89358
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