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

Yes, thank you and that’s exactly what I did. I went to the ER and I was so fortunate enough to get a very informed who Dr. admitted me and scheduled a temporal arteritis biopsy for me, which I am having tomorrow at 3 o’clock.
At the same time, they increase my prednisone from 10 mg to 40 mg to protect my vision. I was at the ophthalmologist three days ago. All vision is perfect. So grateful that I decided to come here.
They will keep me on the 40 mg of prednisone no matter what the results of the biopsy are and I have my first appointment with my rheumatologist March 3.
I was just diagnosed with PMR on February 3.
One of the reasons I came it was it would take at weeks to see a doctor, so I figured this was my best shot.
Thank you for reaching out to me as I lay here in this hospital bed it is very very comforting to hear from my PMR family.
I will keep you posted
🙏❤️

I'm so glad to hear that you are getting the proper care. Good luck with your biopsy. I found it a great relief to get a diagnosis and then appropriate treatment. I was also put on 40 mg of prednisone.

Thank you! My new prescription has larger 1 mg. prednisone tablets, and I have a good pill cutter.
My Rheumatologist had suggested taking 2 mg. , then 1 mg. every-other-day.
I was doing so well on 2 mg…..I thought I was in remission. Wrong!

Hi Everyone!
Newly admitted to the club, have all kinds of questions my docs (GP & brand new rheumatologist) can’t answer. Such as does humidity/damp/big barometric pressure swings affect this? Will flying be exhausting/uncomfortable? Are there good days and bad days? I was started on 20mg of prednisone on January 4th and for the most part it helped a lot. It’s now 7 weeks later with a major diet change (avoid sodium, sugar, added oils; salmon, skyr and fruit/veg/grains/legumes) and I’m getting mildly sore again. And weirdly, aching triceps, ribcage/chest, and neck. Initially the pain was across the pelvis/SI joints and it was awful trying to roll over or get out of bed. Any of this sound familiar? Thanks all!

Oh wonderful!!! I’m so glad I’m on the exact same track as you !!!
Thank you … you are helping me get through the night
🙏🙏❤️❤️

I had general anesthetic for the biopsy and it wasn't difficult, virtually no pain afterward, and I have difficulty now finding the scar.

Oh you are the BEST ever !!
What a timely message !!
I’m smiling 🙂 now
G-D bless you !!

I was diagnosed with Pmr in July 2019, per high crp and sed rates. It took the Dr 5 months to come to that conclusion. My extreme pain began almost suddenly the prior January. I struggled getting out of bed and movement was very painful. My sister had warned me of our family history of PMR, when she was diagnosed a few years before me and our father also struggled with it late in life. We're both in our 60's. I was treated with prednisone for 2 years but I also have GCA. So I got off prednisone in 2021 after starting Actemra treatments 6 months before tapering off prednisone. I'm in my 4th year of Actemra infusions, tapering down to an infusion every 3 months. I still have shoulder, neck and hip pain, soreness, but I take Tylenol to get through the days. I feel best when I walk or ride bike, just keep moving. The couch is not your friend. Thank you for your help and for listening. Good luck to us all.

How fast did you reduce Actemra. Did you go down a few days at a time or weekly. Did you have any side effects such as high cholesterol or any liver issues. I am debating on getting the Omicron vaccine because I hear it triggers Pmr. Thank you for sharing as you are the only person that has been on Actemra longer than I have.

What a range of experiences we have all had with PMR, and it is distressing to hear that some folks have difficulty getting timely and helpful care. My experience has been very different and I think I should give a shoutout to Family Medicine/UIHealth in Chicago. My symptoms appeared just as the pandemic was shutting everything down early 2020. I was concerned that my body was taking so long to recover from exercise, that I was increasingly achy and stiff in the morning, and then all day, and my go-to yoga for lower back did not relieve pain. I had a telehealth appointment with my regular doctor and described my symptoms and experience over the phone. I thought I had Lyme disease. My doctor said, “you have PMR, I’ve never seen it before but your symptoms and profile are clear indicators.” She prescribed prednisone and two days later I walked a 5K for a virtual fundraiser.

After several months it was time to taper from a high of 15 mg daily. All was fine until I hit a wall at 7.5 mg, when my doctor referred me to specialist rheumatologist. She prescribed methotrexate, which gave me a lot of anxiety to take such a serious drug, and we continued the taper. My regular doctor and the specialists have all be extremely knowledgeable and helpful. I am so sorry that all in this community have not had such a good experience. There is already such variation in our symptoms, interaction with other illnesses, and reaction to treatment. Sending warm thoughts to all.