Length of PMR condition

I’m sure it’s all very individualized but I think we can help the healing along through healthy eating, exercise, and R&R habits. At least I feel better when I do this. I’ve said this before so forgive if you’ve heard it: my naturopath took me off Turmeric-curcumin supplements and boswelia as they are contra-indicated with prednisone (they make prednisone less effective). Same with ibuprofen. Only acetaminophen is okay as a pain reliever supplement. I think this probably makes a big difference.

I have reduced sugars and refined carbs, increased fruits/vegetables and whole grains—you probably know the score. Even when in the throes of my flare I went to the pool for water walking (moving all joints that “ask” for release). It is the best therapy I have found. —Good habits anyway, PMR or not.

Resting does not come naturally to me. I got an ōura ring that reads my biometrics and gives me feedback. It has been a great way to learn to read my body and to teach myself to rest and rejuvenate throughout the day. As to prednisone dosage, my doctor prescribed 5mg and 1mg tablets which I can slice, thereby reducing my dosage as my body dictates. I can reduce week by week or longer, I can waffle back and forth on the descent (going back and forth between halves) if I feel that 0.5 mg. is too big a jump all at once. I am trying to think of PMR as a reset. I am learning to take a lot of little rest breaks throughout the day, learning how to slow down or say “No, can’t do that today.” All of which, in the end, make me healthier and happier.

Yes indeed concerning food! Cut out sugar & the white stuff (rice bread etc). I’m trying to incorporate more salads & fruits too. Drink more water. I’m a vegan, tho lazy, so I can do better!! & moving is so important to me. So I still go to Y for stretch class & walk about, bird in the woods. Good for my mental health.

I was diagnosed at 54 and needed 50mg per day to relieve symptoms. Eventually switched to methyl prednisone and got much better results. Took 13 months to taper off. Now 3 months later still having the pain in shoulders and general stiffness despite no inflammation markers. Also having pain and swelling wherever i have old injuries or arthritis and occasionally my knee swells up so bad it needs drained. Ibuprofen and Tylenol barely help. Very frustrating to always be in pain

Welcome @gmanrock, It definitely can be frustrating to always be in pain and not getting much relief. There have been a lot of other members who also have pain despite having no inflammation markers using the ESR and CRP tests. Here's a search of Connect listing the many discussions and member comments on PMR with normal labs if you want to learn what has been shared by others - https://connect.mayoclinic.org/search/.

I also had one of my knees drained when I was initially diagnosed with PMR at age 63. I was started on 20 mg prednisone and it took me 3 and half years to taper off. The PMR came back six years later but I was able to taper off in 1 and half years and it have been in remission since 2018. I still have a lot of off and on pain but mostly it's from degenerative arthritis, carpal tunnel and a few other conditions. I know we all want to get off of prednisone as quick as possible but it does sound like 13 months is a very short time for tapering off. Have you had any tests done to determine if your pain/swelling is caused by your old injuries or arthritis?

I had an appointment with my rheumatologist last week. To my surprise she said I didn't have PMR anymore. I asked why and she said I had was diagnosed 2 years ago and that it only lasts 2 years. (she is wrong it has been 1 year) She it is also because I could raise my hands above my head and get out of a chair. (I always have been able to but am in pain) I still have pain so what is that due to----reply, just arthritis. I started on 30mg and have tapered to 2mg prednisone. Ready to taper to 1 and off. I am still processing doctors assessment--she gave no explanation for suggestion.

@csimmonds
Your doctor is wrong.
First, the bad news: the majority medical opinion is that PMR is not curable and can relapse at any time. The cause is unknown.
The good news is that it can go into remission for years at a time, and the medications work for the majority of patients.
Over the last few decades there has been a significant increase in all autoimmune diseases. Again, the reasons are not known.

@johnbishop I definitely have injuries and arthritis but what are the odds everything hurts at the same time suddenly when i get diagnosed with pmr? My doc wanted to switch me to methotrexate or kevzara but i’m doing everything i can to avoid that. The steroids already caused bone density issues

Just my two cents but IMHO you should consider a biologic like Kevzara. Unlike steroids it does not cause loss of bone density, and in my case (and many others on this Forum) it has dramatically increased the success of titrating steroid use.

@gmanrock I too resisted Kevzara…..did not want another drug etc,
I was wrong…..Kevzara was my angel…..I was able to get off Pred in 3.5 months.

@tweetypie13 Just curious if you had any side effects from Kevzara? I will be starting soon after a year of prednisone did not put me in remission