Are we ever pain free when we have PMR

Margaret, I am tapering down from 30 mg currently on 7.5 mg. I have been basically PMR pain free since June of last year. I do not reduce doses if I have any PMR pain. I am taking my time, not rushing after a bad flare. I think positive and try to smile, I think it helps. ☺️

You reached a point ( around the 7-10mgs. level ) at which many of us have experienced the return of pain. 

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.

 

Thank you for this - I just can't find the right dose so am heartened by this??

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

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!

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 - sorry to heard about your lasting pain.  I was diagnosed with PMR in mid-2016.  At times it seems things will never get better. My symptoms often rotated throughout my body from head to toe.  But with proper treatment, things can and do get better.  Like other autoimmune diseases, your body is fighting itself.  While steroids help symptoms, it does not address the cause(s) of ones inflammation.  While there were some genetic and environmental factors, my primary triggers were reversed with proper diet, exercise and rest.  I have been pain free for months and without daily meds for over a year.  Its not a cure but daily relief is achievable.  Good luck!