PMR Taper and pain

Hi, I wish I could answer your question, but tapering seems to be such an individual situation with so many variables. You may be tapering too quickly or the prednisone increments may need to be adjusted. Also, have you had lab work done recently to check inflammation markers? I was diagnosed in May and just started at 4mg (two days). So far I have had no PMR symptoms returning. I workout (2x/week) and do yoga(2x/week) so every ache and pain gives me dread. I have an appointment with my rheumatologist on Monday and I will ask her if I shouldn’t be tapering 1/2 mg per month (as opposed to 1 mg) at this stage. Needless to say I can see the light at the end of the tunnel (as you probably can too) but I have read too many accounts of people not being able to reduce past 3/4 mg of prednisone without a major flare. Good luck, be patient and keep the faith. Liz Ward

I think that evidently the dose you are currently taking isn't quite enough to control the PMR and its inflammation. You'll likely need to increase your dose up to whatever the previous prednisone dose was that was effective and kept you with minimal or no pain.

Early in 2023 I had finally reduced down to a 1 mg dose but after about 1 week the old familiar pains showed up and gradually began increasing. From all the reading on this forum and another one I realized that I had dropped below the lowest effective dose that would control the PMR pain. I had to move back up to 4 mg before the pain melted away. I sat at 4 mg for 2 months before tapering again - at an even slower rate than before. I've made it down to 1 mg dose again and will try to get to zero but after 7 years I have realized that what matters is the lowest EFFECTIVE dose - not getting to zero. We don't get any prizes for living in pain.

I have to get off of the prednisone due to the worsening of my osteoporosis so in my mind, no going back to any previous dose......I just live with the pain. My rheumy suggested hydroxychloquine to help with inflammation but I got a scary rash head to toe. I'm surviving on tylenol a couple times per day. The PMR arrived shortly after I had a senior flu shot and two weeks later the covid booster....but doctors won't connect it since they say no scientific proof. I was in great shape before this and after two years, at 75, I'm not sure how much longer I have to deal with this, however there are so many worse things. My CRP is at 24 so the PMR appears still active. I've recently read that low dose naltrexone can help but again, numerous side effects. Also I'm very hesitant to take osteoporosis drugs due to ugly side effects. Has anyone ahd a good experience with these drugs? Thanks for your input.

After I was diagnosed with PMR (May 2023), I had a dexa scan which indicated that my osteopenia was getting worse. Because I was taking prednisone (along with mega calcium, vit D and vit K), doc wanted me to begin taking fozamax as a preventative measure. I am on a low dose (35 mg) once a week. The hope is that my osteopenia can be stabilized. So far I have had no side effects. I will have another bone scan in 6 months to determine how to proceed. Right now I am tapering off prednisone (4 mg at present), but I don’t know if my body will tolerate a complete cessation of prednisone. I am 77, in good health otherwise, and don’t want to live with pain or possibility of stress fractures. I am trying to take this condition one day at a time. Every morning when I get out of bed without pain, I am happy. Liz Ward

Fosamax....well that is hopeful. I'm hopeful that my body can get down to zero prednisone....I'm about to go to 2.5 mg...I wish I never took it but I had complete relief the same day I took it almost 2 years ago. The highest dose I was ever on was 20mg and only for 2 weeks and had no problems until I went below 7 mg, and then not too bad. I have pain in shoulders and biceps and upper thighs and knees which makes it hard to do some things but I force myself to walk and exercise when I can. I guess you are going to get something when you reach our age..I just want it to go away faster! Thanks for your info! Hope you can get off of it soon. Riji

How often do you take the 4 mg?

I have recently had the same thing occur. I have been reducing by 1/2 mg rather 1 mg monthly. However, I received the latest flu and covid vaccines and that caused an exacerbation. I bumped my prednisone up a milligram and that helped alleviate the pain. I also added 1 tbsp of flax oil daily and ensured I am walking (shooting for 10,000 steps) daily. I am seeing good results with pain relief.

I certainly understand your concern with the osteoporosis but remember that once a person gets down to a very low dosage of prednisone, the side effects are also very minimal if any. When I first got down to a 3 mg prednisone dose, my rheumy commented that now I was down to the range where the prednisone was enough to keep the PMR and inflammation "asleep" but the 3 mg wasn't enough to truly cause or impact any side effects. He said if I had to take 3 mg daily or less for the rest of my life to keep the PMR under control he was fine with it because now I was at the level where the only effect from 3 mg was with the PMR - really nothing else. If you can be at a low level of prednisone I wouldn't worry that it's going to make the Osteoporosis worse. If you do decide to start taking Fosamax or similar drugs for Osteo, consider if you may have any heavy dental work in the future. That's the one risk but you'll want to read up on it.
Going back to your original comments, I do understand what you're saying as I am classified with Osteopenia but what matters to me most is keeping the pain and inflammation under control so I can have a reasonably good quality of life. If I'm hurting constantly, there is no quality of life.

When I was at the 4 mg level I was taking it once a day before bedtime. The same applies now that I have been solidly at 1 mg and am very slowly moving towards a 1/2 mg dose. Actually, ever since I got below the 10 mg level I have taken my dose in the evening around 11:00 when I'm heading to bed. I do that because I learned years ago that inflammation peaks in the middle of the night around 3-4:00. Taking it before bed for me is most effective. although at times it really messed me up for sleeping. Now that I'm at such a low dose it isn't an issue any longer. When I was at higher doses I had to split my dose, 1/2 in the morning and 1/2 at night, because it seemed like my metabolism was burning up the dose too fast for it to last 24 hours.

Thank you for the info!

My early mornings are miserable too - doc has me taking my dose later in the AM because of my circadian rhythms. I'll ask about taking before bedtime.