How to address PMR pain while decreasing prednisone

amom7, thanks for your info as it reassures me that I do have this weird condition, or that normal CPR might not mean that I don't. I think I need another opinion based on the PubMed studies and now your history. Does anyone know why taking Prednisone for an extended time causes PMR to eventually go away? I did know of one lady who was never able to completely stop Prednisone, however at a very low dose. I'm really frightened at following this NP's directions to continue weaning off at this rate. Anyway, thanks for replies.

My understanding is that prednisone only deals with the inflammation and the pmr goes away when it’s ready. My rheumatologist said I may be on pred for the rest of my life, but I am 80 yrs old. 😀

@sharync, I think it has to do with controlling the inflammation and each of us are different in how long it takes and the dosage needed to reduce or eliminate the symptoms. I have had two occurrences of PMR and the first time it took 3+ years to taper off of prednisone. The PMR went into remission for 6 years and then came back. The second time it took me 1-1/2 years to taper off of prednisone. I think diet and exercise can help control the symptoms and keep the PMR in remission but then that's just my non medical opinion. Here's some information that may give you some insight on how the drug works.

Polymyalgia Rheumatica: A Severe, Self-Limiting Disease
-- https://www.uspharmacist.com/article/polymyalgia-rheumatica-a-severe-self-limiting-disease

The correct prednisone starting dose in polymyalgia rheumatica is related to body weight but not to disease severity
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3114801/

I'm not sure I would be frightened to start tapering off of prednisone but I would have a discussion with my rheumatologist for any concerns I had on a tapering or weaning off schedule. I think most members will tell you that you have to listen to your body. It will tell you if you are tapering off too fast....the pain level starts getting worse. I would suggest that you keep a log of the dosage and a pain scale for how you feel each day. This will give you something to share with your rheumatologist and they may be able to share some suggestions.

I had the same experience with the test results and with my doctor's response to them. To make a long story short, I finally went to the Mayo Clinic in Jacksonville, FL. You are correct some PMR patients do NOT have normal tests. I was one of them. My dosage of prednisone was increased, and the pain went away.

Be your own advocate.

Keep researching and studying the disease.

I was told at the Mayo Clinic in Jacksonville, FL, that about 40% of PMR patients never go into remission. Unfortunately, at present I am one of them. Further, I learned that about 10% of PMR patients will not have elevated lab results for inflammation. Unfortunately, I am in that category as well. Currently, I am on 12 mg of prednisone. The pain came back (difficulty in standing especially) when the dosage was dropped to 11 mg. I went back to the 12 mg, and I will next try dropping to 11.5 mg for a month and see if I can then drop to 11 mg. At this point, a dosage of 5 mg is looking good! Hope springs eternal . . .

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?

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!

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

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.