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

I am85 and have had PMR for over 30 years and have been taking prednisone for all that time. I had tapered to 1m for over 10 years. Recently I had cancer surgery and the surgeon wanted me to go off prednisone before the surgery. The PMR has come roaring back and I am in a lot of pain. I have always been confused about what the effects of prednisone have had on me. Why is it so dangerous? I hate to have to begin again on prednisone as it took me so long to get to 1m. Would love to hear from someone regarding this. Thanks so much.

I agree that having PMR has made me more compassionate and less judgmental of others. I appear to be doing great to others even on days when I am not doing so well. It's a good reminder that we never know what another person is dealing with.
So grateful for this site and for all of you who are willing to share your stories.

@marybarbara Well you win the contest no one wants to win in terms of the length of time you've had PMR. You sound like one of those who successfully keeps PMR symptoms at bay with a low dose of prednisone. I'm so sorry that your symptoms have returned. What dosage of prednisone are you on at the moment? I'm wondering if the flare protocol (up your dosage by 5 mgs.) might work for you. If so, you may be able to reduce from 5 mgs or 6 mgs. fairly quickly once you've stabilized.
Prednisone can cause bone loss and stomach issues. At your last low dose of 1 mg. the effects should be minimal.

Thanks for your reply. Currently I am off prednisone altogether due to cancer surgery. I wonde4 if I took Advil or Tylenol each day would be a solution. It does take the edge off.

Sending you support for your journey...you've been through a great deal. I can read between the lines. i survived pancreatic cancer and am clear now 6 years. I was given 2 months. It was metastatic and now there is nothing there. LOTS of treatment for sure and other outside the box remedies. The PMR is a pain, but I am getting through it and feel better after a really rough year and a half. May healing arrive and relief from pain also arrive.

Many thanks for your kind message.

I have been on 2.5 mg of prednisone for about 10 years. There are at least 2 published medical studies on long-term use of prednisone that I have posted on this PMR site. Search for my name.

Thank you

Hi everyone, I was diagnosed with PMR 2 years ago. My CR-P and sed rate were never that high but I had all the symptoms. Have spent the last 2 years tapering from 40 mg daily. I've had several flares and have had to increase dose. I know this is a marathon and not a sprint but wow it's tough! After much work, I recently reached 5 mg but had a relapse when I got to 4.5. I returned to 5 but recently ended up in the ER with severe lower back pain radiating into hips, pain wakes me at night and stiff/painful all day. ER doctor prescribed 40 mg pred for 5 days and then back to 5 but now my rheumatologist concerned that jump will be too tough and she wants me to go to 20 for 2 weeks then see her. Here I go again trying to taper. By the way, I've also been diagnosed with small fiber neuropathy. The pain in my back is so new I've been doing my own research and wondering if it's myofascial pain. Stretching helps a lot. Don't mean to complain, I have a good life, 71, retired, married 46 years, grandchildren to make us laugh and lots of hobbies. I'm so happy to have found this forum. Thanks for proving this wonderful opportunity to educate myself on PMR!!

Regarding pain in the hands, I have had burning, swelling and pain in the hands since my diagnosis of PMR in April 2022. I was on 40 mg of prednisone in the hospital and came home with 30 mg. I am now down to 10 mg, and as I have tapered, the symptoms in my hands have gotten worse. I saw my rheumatologist last week, and he said (and I am paraphrasing) the hand involvement is not PMR, but is rheumatoid arthritis, and that PMR can lead to RA, though not common. The higher doses of prednisone masks the RA, but as one tapers, it becomes more evident. He indicated that there are better meds than prednisone to manage the RA.
This was not the news I wanted to hear, and I went through denial, frustration, anger, and finally acceptance and motivation to keep moving forward. This process all happened in the doctor's office and on the trip home with my husband. I feel fortunate that my husband let me vent without giving me advice, and by the time we got home we were able to find a little humor in our situation. I have been prescribed hydroxychloroquine for the arthritis and will keep you updated on its impact.
Thank you all for your posts. This site has been incredibly helpful.