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

I am Molly, at 56 years young developed PMR, prednisone was the drug of choice from my PCP. It worked well & within a year of tapering, I went into semi-remission for 6 months only taking 1mg of prednisone daily. We had family issues that lead to a complicated move. The PMR raised its ugly head with vengeance. It’s still with me so 6 years has robbed me of my great health & the disease caused grinding in most of my joints seriously affecting my head, shoulders, spine, pelvis with excruciating pain. Ive seen 70 + doctors, therapists, herbal and holistic specialists, hypnotism, and a doctor for each of the affected joints. I’m exhausted & broke. Anyone have any miracles.?

I’ve taken 3 shots for Covid with out any reaction at all. None.
My biggest problem is stress! Flares happen
when my life gets crazy & Ill have to add to the 10 -15 mg of prednisone. I’ve tried 3 biologics - none worked.

Molly,

I am sorry to hear you’ve been so tortured by PMR. Obviously, anyway you can reduce stress should help. I suggest you look into deep breathing exercises which are easy and calming especially when you hit a stressful situation. Also, you might try myofacial release which I have found makes me at least some short term relief. You can use a foam roller on the floor and for arms on a wall. There are lots of YouTube videos on it. If you’re not up to the effort that requires a massage gun works well too for some relief. I hope you find some.

I'm very sorry you have suffered the pain of PMR and all the attendant problems for so many years. Like you, my first bout of PMR began during a period of anxiety and stress. The second time started immediately after I received the Covid vaccine. I feel your heartache and frustration and I hope you can find a way to reduce the stress in your life.

Molly thank you for sharing 💞. I am 78 years young and Stress has also been my trigger. I was a holistic massage therapist and was so “anti “ pharmaceuticals… then PMR entered my life and challenged everything I believed in to stay healthy. I went down the same path with all of the more natural therapies but in this case nothing seem to really work. In saying that I still believe that there are many natural and holistic therapies but sometimes we have to integrate both into our lives. For me I had to leave my ego at the door and go down the road less travelled for me. Prednisone is the drug we love to hate but for many of us it’s the drug that saves our lives both physically and mentally. Once I accepted that reality for myself I needed to deal with the stress and my doctor prescribed sertraline for the anxiety and obsessive thoughts I kept having. My world changed and the sun started to come out. This works for me and I’m certainly not encouraging anyone else to try more medication. Molly hang in there you’re in the right place here on the forum 💞🇨🇦💞

I had a flare up in December when I went to 8 mg I had to go back up to 15 to stop the pain and stiffness tapered down 1 mg every to to 3 weeks to 10.5 during this time stiffness and pain was zero or 1 - 2 on pain scale. Yesterday reduced to 9.5 after 3 weeks now stiff and sore all over 3 - 4 level don’t want to flare again. Plan was to reduce 1/2 mg from here on each month. Should I stay here at 9.5 for awhile to see if settles down or go back up again till stiffness is gone and start taper again

Thank you for this connection. I'm in my first year of PMR and learning about the art of tapering prednisone. This blog has been a great help and my daily readings have kept me from talking so much about things to friends and family. I know they love me, but enough already 😉

Hi, I'm Helen and I was a very active 57 yr. old when PMR became a part of my life. I ran every morning for 1 1/2 hrs, went to Zumba class, hiked and enjoyed playing with grandchildren. February 2021 I had my second Covid shot and woke up the next day with the most intense pain in my hips and shoulders I've had (I have run marathons) so I was pretty frightened. My doctor assumed it was an allergic reaction to the shot but after blood tests and a visit to a rheumatologist it was confirmed that it was PMR. I have learned a lot of coping methods but unfortunately for me the prednisone has never completely taken away the pain and they are talking about alternative treatment. Has anyone else had this same experience? If so, what medication worked for you?

I never receive any of the discussions or take part after I submit a question or answer, evidently something is wrong or missing from my end!

@13201, I just checked your settings and they seem to be set correctly. You should receive a daily digest that summarizes the activity in the groups you follow, like the PMR group. Furthermore you should receive an email notification when someone replies to you or @mentions your username, like I did here. If you are not getting these emails, please check your spam folder.

If you're still having issues, please send me a message using this form https://connect.mayoclinic.org/contact-a-community-moderator/

Don't taper until you're feeling reasonably well. If you do, the inflammation will slowly accumulate and you'll have a flare. We all have a plan, but unfortunately we have to let the disease dictate when and how much we taper. Remember the average duration of PMR is 5.9 years (according to Mayo) and your objective is not a relentless drive to 0 prednisone. What we're trying to do is find the lowest amount of prednisone to keep the pain at bay. Once you get to 10 mgs., you might try reducing by half a mg. If I were you, I'd go back to 10.5 until all is well. Then try 10 and if that works, wait a month and try 9.5 again. I hope that gets you back on track.