Has anyone just tried to bear the Polymyalgia pain?

Hi Debbie.  The problem with just popping an extra few grams of pred when we are in pain is self destructive.  The yo-yoing (!) doesn’t help us to improve our muscle strength naturally - take a pill - less pain, that way we’ll never reduce the pred.  The only way is the DSNS method.

It’s hard, I know, but most of us find our own way of coping with the pain (with the help of people on this site).  The experts will no doubt be along with more helpful suggestions.

Hang in there, you’ll make it!  💐💐

I agree with Constance, Debbie. I'm not sure how long you have been on Pred but I have been fortunate and only had one flare..... at the beginning. I dropped from 12.5 to 10 as advised. I quickly upped to 12.5 for a short time and then reduced  to 11. I am now reducing from 3        to 2.5 and did have some                     withdrawal pain similar to the        PMR but recognised it as                  withdrawal. Someone more            knowledgeable than me will be   along soon. 

Hi Debbie, I really do feel for you!

I did try to bear the pain, in the beginning before going on to prednisone, I was working and after taking so very long to get ready for work and then arriving at work, finally getting out of the car and standing there, unable to walk into work, then forcing myself to walk.

That wasn't good so yes I had to take steroids.

I do hope you will find some relief!

Debbie, how long have you been on prednisone?  I started at 20and stayed there for six weeks.  Long enough, my doc thought, to being tapering.  If you can’t go from 20 to 19, I suspect your body is not ready to taper.  

One thing we we have all learned is that you can’t push it.  Your body tells you; you do not tell it.  I tried to push it once...from 6mg to 5mg, and that was a disaster.  I was angry.  Angry at my body for treason.  For failing me.  For failing to listen to me.  My body responded with these simple words: I and not you am in control of this one.

DebbieHurts, we are all different, but from my experience; I would find the level of Pred on which I was pain free. I had to take 30 mg. If you are pain free on 20 mg great. Stay at that dosage till you really feel good, minus the Pred side effects. Then start to taper very slowly never more than 10% decrease, I used a modified DSNS method at first. And have been PMR pain free since last June. I have been very active, last May I was in a wheelchair, it can be done! Think positive with a smile on your face. ☺️

I have PMR and did elect not to go on Prednisone after the  Pred trial to determine if that was what it was coupled with positive lab results. I've tried every supplement etc. just like everyone else on this thread and when it gets so bad or as you say I'm just beaten down I will take a Tylenol #3. I try to limit it to 1 or 2 a day or night if I can't sleep for the misery. 

It's not easy and has taken quite the toll on my daily life activities and just like everyone else here deal with people who just can't understand why I can't do what I used to due to "not feeling good".

I am hopeful though, I honestly am. My life could be so much worse and I do see that everyday in others less fortunate and I am grateful I am no worse.

This forum is helpful though....so keep the faith

Thank you all for the helpful comments.  I come to this forum often, though I am usually quiet except when I am suffering.  Then I want to complain to someone who understands!  I feel for all of us!  I am still better today and went back to my DS schedule.  I've been on 20 for a year at least, and before that I was down to 13mg, but had a big set back and haven't succeeded so far in reducing much.  My dr is getting strict about it.

I was diagnosed with PMR in the Fall of 2014 and put on 20 mg. of predisone, and 20 mg of methotrexate once a week.In Spring of 2015 the rheumatologist said she felt I also had many of the symptoms of RA as well and it was showing up in the blood work as well.

Now I'm down to 5.5 mg daily on the predisone. Long struggle of up and downs to get here using the Dead Slow method, and having to drop only "0.25 mg" at a time to get here other wise lots of pain.  "Fun" cutting a 1 mg. tiny predisone pill into four pieces, but has worked for me.  1 mg drops put me in awful prednisone withdrawal pain, so the reason for the 0.25 drops.  I'm also down to 7.5 mg of methotrexate once a week, and on 200 mg. of plaquenil twice a day.  I've only been at the 5.5 mg daily of predisone for two weeks, and I do have more discomfort, especially in my shoulders and arms, in the mornings which I think is the PMR, and pain in my hands, especially my left thumb, which I think is the RA.  Usually after several weeks of the lower dosage things seem to settle down so I believe most of this is the predisone withdrawal pain.

I do Tai Chi on Mondays, Yoga for seniors and arthritis on Wednesdays, and Sit and Stand Arthritis on Tuesdays and Thursdays. This really help and keep me moving.  I also ride a recumbent trike two miles several times a week.  Some days the exercise really bothers me to do, but then later in the day I'm so much better. 

Hang in there!  This is a long journey.  Yes, the extra predisone makes you feel great, but it also does BAD things to your body.  So go very slow with the reductions and know you aren't the only one struggling with this disease.

No - if you have something else they need to identify what because most things respond better to other drugs that have fewer side effects than higher doses of pred and in the case of late onset RA for example other drugs will also prevent the joint damage that is possible there are other disorders that can appear very like PMR that do far better with other drugs. Low doses of pred as used in PMR don't come with too many side effects but that means getting to those lower doses. If the patient has real problems reducing from 20mg in supposed PMR it really is a sign that it may well not be PMR at all.