How to address PMR pain while decreasing prednisone

Hi @jules11 I live in Wellington New Zealand and have joined this wonderful group to try to understand this condition, I have found it very helpful and it has given me emotional assurance as I got very depressed with this. I was diagnosed back in July last year and are now on 1mg. I was instructed by my Doctor to reduce 1mg per month once I got to 10mg. I did okay, like you just had a bit of stiffness in my shoulders and hips, when I got around 4mg I had to listen to my body as the stiffness was still there and I waited until I felt almost pain free before I reduced, it was normally around 6 weeks rather than 4. I am reluctant to go off the 1mg as I had a bit of a flare up when my doctor changed my blood pressure pills, Im slowly feeling better but still have days where the stiffness and pain in my shoulders is quite bad. I feel that as long as you have symptoms you have to listen to how your body is and respond when your feeling okay. I know we all want to get off this drug and go back to normal but feel is it worth the risk of a flare up and then have to go back on a higher dose. I think patience is the name of the game, good luck.

Hello Everyone. I live in Perth, Western Australia. I have posted on here before but not for a while. I was diagnosed with PMR in December last year, and put on 20mg of prednisone. I have been tapering ever since, ran into a bit of a flare when I hit 4mg. I have been on 4mg for 3 months, so feel a bit stuck. My CPR got down to 1 on 15mg, but has slowly risen to 26 while on 4mg. My doc wants me to stay on 4 for another 6 weeks, but I have decided to try 3mg then 4mg then 4mg. Just a cheeky little reduction. I just need to keep moving forward, and I feel fine, just stiffness in thighs and shoulders. Thoughts?

Another site I follow, it comes from the UK is called Health Unblocked. There are lots of postings concerning PMR from people all over the world. I have found it a mine of information and that it has many helpful suggestions and guidance

I too, was diagnosed with PMR in December. I am down to 5mg, for 2 weeks, and hope to go down to 4.5 soon. I am a little apprehensive, still a lot of stiffness in legs, although twice this week I have improved walking distance. This may not be a good time to expect too much as this is the hottest month of the year, and hotter than usual, about 100 degrees F. One whole mg. seems a drastic drop for you to do at that low stage. Lots of Luck from an Aussi in the Texas hill country.

Hi @jules11 -- I've had 2 occurrences of PMR. The first time it took me a little over 3 years to taper off of prednisone. The second occurence 6 years later, it took me 1-1/2 years to taper off of prednisone. I lived with a minor amount of aches and pains at each taper point but kept going unless the pain was really bad. It might help to keep a tapering off log and write down the dosage and the pain level so that you have something to compare with each time you drop the dosage. I started tapering by 1/2 mg when it got difficult and that seemed to help me.

Good luck!

Hi @jules11 I live in Wellington New Zealand and have joined this wonderful group to try to understand this condition, I have found it very helpful and it has given me emotional assurance as I got very depressed with this. I was diagnosed back in July last year and are now on 1mg. I was instructed by my Doctor to reduce 1mg per month once I got to 10mg. I did okay, like you just had a bit of stiffness in my shoulders and hips, when I got around 4mg I had to listen to my body as the stiffness was still there and I waited until I felt almost pain free before I reduced, it was normally around 6 weeks rather than 4. I am reluctant to go off the 1mg as I had a bit of a flare up when my doctor changed my blood pressure pills, Im slowly feeling better but still have days where the stiffness and pain in my shoulders is quite bad. I feel that as long as you have symptoms you have to listen to how your body is and respond when your feeling okay. I know we all want to get off this drug and go back to normal but feel is it worth the risk of a flare up and then have to go back on a higher dose. I think patience is the name of the game, good luck.

Another site I follow, it comes from the UK is called Health Unblocked. There are lots of postings concerning PMR from people all over the world. I have found it a mine of information and that it has many helpful suggestions and guidance

I think this is the site @noosat1 is referring to: https://healthunlocked.com/polymyalgia-rheumatica

This is Beryl .....I honk what John says is a more sensible move as you do not what a flair up....

I myself have been having trouble and am on 7.5mg with methotrexate 20mg once a week folic acid also .....I am improving but as usual very slowly .....pain level is never the same as it seems it goes with how much I have done that day ......but the good thing is where I had pain up to my waist it is now from thighs and down ......th stiff back was very difficult to deal with .....

I think I would say to you don't be in too much of a hurry this thing has a mind of its own .....but we are all different .....Beryl

Thanks so much lindapc, I am in awe of you getting down to 1 mg!! I understand your reluctance to reduce further. Has your doctor done a CPR blood test? Mine does them regularly and seems to base all decisions on this, regardless of my ability to continue to taper. Oh well ... onwards!