Polymyalgia Rheumatica treatment options

hi, my name is Joni and I have had polymyalgia rheumatica for over 6 years. I am on a low dose (5 mg) of prednisone, but even with slow tapering, I cannot be painfree without it. I have failed tapering for several years. I refuse to take any other medication, as I have developed osteoarthritis and thin skin (resulting in
sever bruising very easily. All from the prednisone. It is very disturbing that most people get well after 2-3 years, but I have not. I will be 70 years old, and otherwise am well. We travel frequently and I still work
perdiem in nursing at a nearby hospital. Would like to hear from you.

I am 57 years old and have had PMR for 2 years now. Started on 20 mg. of prednisone initially and tapered down to over the 2 years to 1 mg. but the symptoms are back and my blood work and inflammatory markers are all elevated to the same level as when I was first diagnosed. I refuse to back up on prednisone dosage so I supplement with Aleve but I am always in pain, 24/7. It seems like whenever I drop the dosage the symptoms flare up. I am beginning to think prednisone is addictive as the tapering off is as bad as the disease itself.
Not sure what to do next and my Dr. doesn't seem to know either. I am going to try to take a yoga class to see if I can get some relief.

Nancy here. I am 51 and have had PMR for 3 years and did the prednisone thing for two of them. As I tapered off the prednisone the symptoms returned. I am now on methotrexate but it does not seem to help. I have begun acupuncture treatments (not cheap!) and have gone 6 times. Sometimes I feel better after a treatment. Sometimes not. I am desperate for relief from the aches and pains, often accompanied by migraines. I would LOVE to hear from someone who has beat this thing!

I'm new at this, aND JUST NOTICED THE DATE OF YOUR POST. (oops, sorry). I expect by now you have your answer. Anyone else in myt position? I'd very much appreciate hearing from you.
LEARNER

The sucess is with the reducing of the prednisone and even then it is difficult and impossible without methotrexate and neproxen or such... Check out Polymyalgia on facebook. I have a site and it has information on reducing.

I don't have the answers to these questions but I'd like to know if anyone has found relief from the aches and pains of this disease? I'm decreasing the Prednisone and have a lot of pain. My doctor hasn't prescribed any other medication for me. Please reply

Hello @apr39, Welcome to Connect. I also have PMR but it is currently in remission so not having any of the associated pain. You mentioned that you are decreasing the prednisone dosage and having a lot of pain. A couple of questions - did your initial dosage (20 mg?) give you relief from the pain and what kind of a tapering schedule are you using to get off of the prednisone?

For my first occurrence of PMR it took me 3 years to get off of prednisone and the last six months to a year I was going back and forth between 1 mg and 1/2 mg dosage until I was finally able to stop taking prednisone and the pain was nearly gone. I still had a liitle pain and stiffness but nothing that was unbearable like it can normally be.

Hello! Thank you for giving me this information. Yes, the initial dosage did give me relief. I've been reducing the dose 1mg. each month for the last year but like you I've been going back and forth. I'm down to 2mg. but my doctor told me to take 5mg. since I'm having so much pain now. I'm glad you're in remission and I hope I will be too. I hope you'll keep in touch since I don't know anyone else with this disease. Vivian

@apr39 you have lots of PMR friends here ☺. Just take it one day at a time, one step at a time and keep moving. Hopefully the PMR will go into remission soon. The tapering can be difficult and you just need to find a schedule that works for you. I would talk to your doctor to see if they have a suggestion. If you are going down 1mg at a time and are at 2mg and you are in pain, I would try just bumping it up 1mg to see if the pain goes away. I would run it by your doctor just in case but that's what I did when I was going back and forth and the pain increased - I would just go back to the previous dosage to see if the pain went away. If it did, I would stay with it for 2 to 3 days and try reducing again going down by 1/2mg if necessary.

Good luck!

I started taking 15 mg of predisone and within a week I was 80 percent better. I could not get out of bed so it was like magic in 7 days. I have always exercised and was down for 2 days and made myself get moving again (cycling) and it helps enormously with pain. I am a little stiff in AM but after a 2 hour ride on a road bike at night I am almost back to the old me except the creepy prednisone feel. Everyone is different but ---- moving is crucial.