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

I've been on between 1 and 2 mg/day of prednisone for the last few years but recently I have been getting pain in the shoulders and upper back and I'm afraid the PMR is returning. Perhaps the stress from everything going on these days. I have a bunch of 5 mg pills left over and am considering trying to up the dose and see what happens. Any suggestions on how high I should go? 10 mg/day?

Hi there. I'm no expert...diagnosed a year ago, but I'd try 5 mg. first. Stay under the 7 mg. where the adrenals can become involved. If 5 mgs. work, then very slowly taper down to the point where you had no symptoms. Don't wait too long to address this. Best to you.

Thank you for your response and, yes, we do seem to have similar experiences! How long were you on Anestrozole before you were asked to discontinue it? If there was a cause for my PMR I am thoroughly convinced that it was the Anestrozole and I wonder if it was Anastrozole and not Cipro that caused you to have the hit by truck symptoms. I will be interested in learning how you do now that you are taking it again. (It was 2 months before my problems developed.)
What angers me so is that the Anestrozole was prescribed in error - I never should have been taking it in the first place !

I was only on the Anestrozole a short time, maybe a few weeks, when PMR symptoms started. One of the doctors I asked about it was the radiologist who suggested that Anestrozole was probably the reason. I then contacted my oncologist who said to stop Anestrozole for two weeks. However, after the two weeks I still had the symptoms but no diagnosis. Oncologist sent me to my regular GP who took blood work and said I was just anemic, but he sent me to a neurologist suggesting that it might be something to do with the neuropathy I have from the chemo. It was the neurologist that diagnosed PMR so he sent me to the rheumatologist who immediately put me on Prednisone.I am now back on Anesterozole and have no symptoms so if the Anestrozole was the kick off it is not affecting me now. I am wondering if it is not just the total shock to my body from all the health issues I had, i.e. chemo, surgery, radiation, neuropathy, colonoscopy and all the different drugs I had to take. As they say, no one knows the cause of PMR. Maybe it is stress on the body as my husband was also going through some difficult health issues too. As far as you not having any breast tissue I remember asking my surgeon if it was best for me to have either a full mastectomy or just a lumpectomy. He told me that if I have a full mastectomy it is possible to get the cancer back along the scar tissue. That is the reason I only went for a lumpectomy. However, check with your own doctor about that.

Hi, My name is Janet and my partner has suffered with PMR since December 2018 and I'm really looking for advice for him, I feel so sorry for him living with his pain

Hello Janet @janethenry, Welcome to Mayo Clinic Connect. Thank you for advocating for your partner. PMR can be quite painful and a lot of people who haven't dealt with PMR pain can find it hard to understand. Most of us have started on prednisone. I have had two occurrences of PMR and both times was started at 20 mg dosage of prednisone.

What has helped me once I was able to taper off of prednisone and no longer have the extreme pain was to focus on staying active and eating a little more healthy. Here are a few articles that may be helpful for other suggestions.

What to eat if you have polymyalgia rheumatica: https://www.medicalnewstoday.com/articles/321683
3 Strategies for Coping with Polymyalgia Rheumatica (PMR): https://www.arthritis-health.com/blog/3-strategies-coping-polymyalgia-rheumatica-pmr

Is your partner currently taking any medication for the PMR?

Good morning. PMR is anew diagnosis for me. I have had low back issues for a long time...not unexpected after years of working as an RN and tending to livestock on our farm. But things got dramatically worse about a year ago. I went to an orthopedic clinic and after a 7 day course of prednisone and 4 weeks of physical therapy things were worse. MRI showed spinal stenosis and degeneration of facet joints. I was referred for spinal injections. The first experience with this was awful..I won't go into details, but decided to end my relationship with that physician and clinic. Things were getting worse...pain in hips and thighs was breath taking and somedays I could not walk through the house without holding on to furniture. I tried acupuncture fo 3 months and it lowered the pain level a bit. Then the pandemic came and because of our age and other health issues our family has been staying home unless a trip to a doctor or pharmacy was needed. About 3 months ago the pain intensified so I went back to the orthopedic clinic. I was referred to a different pain management clinic. This time I had confidence in the provider and was glad something would be done to help. I finished a course of 3 subforaminal injections on July 28. Sadly, the impact was minimal. When I had my routine appt with my internist I asked the doctor to rule out other things that might be going on in addition to the mess in my back..I felt generally sick. Labs came back with slight elevation in sed rate but a CRP of 32. All other labs were WNL. I have started a trial of prednisone..31 days beginning with 40mg per day for 10 days and tapering to 10mg. Doc will evaluate when this is done. I am on my 3rd day at 40mg. The first day I felt some relief, but yesterday no further improvement. I was hopeful. but now feel discouraged. I know I haven't given this enough time and I will stick with it. It is just that I am so overwhelmed and exhausted. Any advice or encouragement is appreciated.

Hello @desertsooner, Welcome to Mayo Clinic Connect. You will notice we merged your post to an existing discussion. If you click the VIEW & REPLY button it will take you to the Polymyalgia Rheumatica (PMR): Meet others & Share Your Story discussion where you can scroll through and read what other members have shared.

You mentioned you started taking 40 mg prednisone 3 days ago to treat the PMR symptoms but you haven't received much relief from the symptoms. It's been my experience with 2 occurrences of PMR and starting each with a 20 mg dosage or prednisone that it was like a light switch turning off the pain after a few hours of taking the prednisone. I'm wondering if there might be something else underlying that might be causing the pain. Were you diagnosed by a rheumatologist?

Thank you for the reply. My internist is working on this. There is a 6 to 8 month wait for an appt with a rheumatologist in our region. I do have very real and significant damage in my lower back and I am having MRI of cervical spine and a total body CT this week to make sure nothing is wrong there. None of the other labs ( and the blood work was extensive) signaled anything of concern. The doc started high dose prednisone because my CRP had risen 22 points in 5 weeks...he wanted to lower the inflammation. I did tell a difference by the end of the first day, but had hoped things would be basically gone by last night. This morning I am feeling better..subtle but real.

@desertsooner I can only have empathy because we have some similarities. I retired from nursing at age 62 and I'm currently 66. I also have a mess for a spine which is being called "mostly degenerative" which I find hard to believe because I have never injured my spine. I do have a long hx of inflammatory arthritis which always attacked my spine. The inflammatory arthritis was diagnosed at age 33 and PMR was tacked on at age 53.

Prednisone has been both a blessing and a curse. I took it intermittently at high doses for relatively short periods of time of 1-3 months for each flare of inflammatory arthritis. PMR, on the other hand, was treated differently and the "usual" starting dose is 20-30 mg tapering to 10 mg over a couple of months and then 1 mg per month thereafter. It never seems to work that way in reality.

Prednisone is a tough medication to take and your starting dose of 40 mg for "just" PMR would be considered high. People with "just" PMR usually obtain almost complete relief with a starting dose of 20-30 mg.

I'm already aware of awful stories about being diagnosed with PMR. I understand not wanting to go into details but details are important. You never know who might come along and who is able to offer good advice and be helpful. Feel free to share your details. Welcome to the forum.