Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Are you able to get the 1 mg prednisone tablets and then go down by 1 mg or split the tablets and go down by 1/2 mg? Slow and easy, listening to your body is the way to taper off.

I am on one now and hoping it will hold . Didn t know about the half . My dr didn't mention it. Go back in three months if all holds .

Hi I was diagnosed in April of this year! I was like you, going to the gym, walking 3 miles a day and taking care of an active day 4 year old. Then one day, it hurt me to even stand up! Talk about surprise! I started out at 15 mg of prednisone a day, and have cut back to 9. Having trouble sleeping, and hungry most of the time. But I can walk and use my arms again and the pain is gone. Don’t know how long this will last, or if it will ever go away. I want my life back! This site does answer a lot of questions.

A shocker. It’s great you don’t have pain. I only have it when I exert myself . I’m noticing I’m quite different to the rest. Not on prednisone …afraid of side effects . I think I’m going to make through the storm!!! Instead of saying I can’t …I say I can do this! A mental game.

Hi, I just came across this forum. I've had PMR for 2-1/2 years now, and like so many others who's stories I've read, I just woke up one day unable to move without a ton of pain and stiffness. I needed help getting up and down until I was put on Prednisone. I was never able to taper off it, so I was put on metho injections. I felt much better, but then had to discontinue during a surgical recovery. When I stopped the injections I thought maybe I was in remission, but it was right back within a month. I then transitioned to Meloxicam, which didn't seem as effective as the Metho, but I was more comfortable not having to take the Metho. Recently I had to go off the Meloxicam for 3 months following spine surgery, so I'm miserable again. One more month and I'll go back on the Meloxicam. In the meantime I've been trying a diet of non-inflammatory foods (no wheat or anything with lectins). Now I don't know what is worst the diet or the pain. My digestive system is happy with the diet, and I lost 10 lbs (I didn't need to lose), but unfortunately it hasn't had any effect on my PMR symptoms. I'm just praying year 3 is the end!

I have had PMR for over 29 years. This is the 4th re occurrence that I have had. I tried taking 20 mil of prednisone for 2 days because symptoms went away . the 3rd day they returned and now I am again back on the pred. What is the amt per day and for how long should I take this drug. thanks fillis

Hello @roboedit, I see your question may have slipped through the cracks and no one gave you an answer. The good news is that it doesn't normally lead to a decreased lifespan but can impair the quality of your life unless you get treatment and also make some lifestyle changes to help. My first bout of PMR took 3-1/2 years to taper off of prednisone and the second time it popped it's ugly head was 6 years after it went into remission. It took me 1-1/2 years to taper off of prednisone the second time and what helped is I made a few changes in my lifestyle - eating healthier and exercising more.

Here is some information you might find helpful -- Diet and Lifestyle Changes That Can Aid in the Treatment of Polymyalgia Rheumatica: https://arthritissj.com/diet-and-lifestyle-changes-that-can-aid-in-the-treatment-of-polymyalgia-rheumatica/

How are you doing with your PMR now?

Hello @dalet72, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. It sounds like your PMR journey has been difficult. It's good that you are focusing on diet which can really help but I don't think it's the total answer. Here's some diet related information that you have seen and I pulled out a small section here to mention

"No diet is proven to make PMR significantly better or worse for most people, and everyone reacts differently to foods. Pay attention to what foods seem to help you feel your best and keep track of them. It’s also important to have a well-balanced diet and to eat from all major food groups. Following are some foods that may be beneficial to people with PMR." -- Can Diet Affect Symptoms of Polymyalgia Rheumatica?: https://www.healthline.com/health/polymyalgia-rheumatica-diet

My first occurrence of PMR took 3-1/2 years to taper off of prednisone. The last six months of that was going back and forth weekly between 1 mg and 1/2 mg until I was finally able to stop taking prednisone with a minimum amount of aches which went away after I got up in the morning and started moving.

Do you like to exercise as part of a daily or weekly routine?

Thanks @johnbishop. I’ve exercised all my life, but now I find that anything beyond simple aerobic exercise just causes more inflammation pain the next day or two.

Hi @fillis, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I've had 2 occurrences of PMR since I was first diagnosed with the disease back in 2007 at age 64. Mine is currently under remission. I don't think PMR will go into remission if you take 20 mg of prednisone for 2 days and cold turkey stop taking it. Prednisone has to be tapered off of slowly normally on a 1 week at a dose or 2 weeks at a dose, then go to a lower dose. All the while listening to your body and how you feel when you get up in the morning. I worked with my rheumatologist on a tapering schedule that worked for me but he always told me that it's best to adjust the tapering anytime the pain is too much. That was why he had me keep a daily log of my prednisone dosage and how I felt that morning on a scale of 1 to 10. If I only had a few aches that to me would be a 1 or 2 or possibly 3 and it was my day to taper to the next lower dose, I would try it for a couple of days at the new dose to see how I felt. If I felt OK, then I would stay at the lower dose on my way to the next lower dose.

My first occurrence with PMR took 3-1/2 years to taper off. The last six months was going back and forth between 1 mg and 1/2 mg until I was able to stop taking it and not have much aching on a scale of 1 to 10 say a 2. My rheumatologist gave me a prescription for 5 mg, 2.5 mg and 1 mg prednisone tablets which helped with the tapering immensely. You may find the following discussion helpful.

– Tapering off of Prednisone https://connect.mayoclinic.org/discussion/prednisone/

Have you discussed a tapering plan with your rheumatologist?