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

@caroljeand agreed weight loss and dehydration definitely blood sugar related. As we know prednisone causes high blood sugars also. I am a type 1 diabetic. Having PMR causes me to really have to give myself more insulin to control.

@texastechguy Mmmm, this was my experience. We had 6 doctors state they have seen increased cases of PMR after booster. I had covid booster and flu shot 17 November 2025 and yes, I am a strong vaccine believer. Early December started symptoms and wrote them off to workouts. By early January could not dress/get out of bed without help. As a US resident I had no accessible local doc care. I emailed/zoom contacted both my doctor in Europe and a fasting clinic in California. BOTH said they had seen cases of PMR after booster shots. Then I did go see a doc in Canada (reasonable $$ when paying out of pocket) and she told she had seen several cases of PMR within 2 weeks of booster shots, including her own sister. Then my husband (ALL of this 3rd and 4th hand info) went to see his own GP (USA) and she also said she has seen an increase in PMR cases after booster shots. Mind you, we had ALL vaccines in the 1960s and 1970s both childhood vaccines as well as all required to travel to tropical lands, then a different technology. Covid vaccines in 2020/2021 forward were based on the mRNA, which technology was about 10 years old when they used it to bring the COVID vaccines. Frankly I have no idea and do not understand enough of it. I do know that in January PMR had changed my life so drastically that I did not want to live with this. That said, my Canadian doc March 19 told me to start Prednisone at 30MG and taper 5MG each week. Within a month I was at 10MG, now 1.25MG. Seems that since the Pred duration was shorter both the side effects and the tapering have been pretty easy. PMR is really quite challenging for so many and I am sorry to see anyone go through this. And not knowing when it might be over.

Hi everyone. I thought I was a pretty healthy and active person. Hospital nurse for 25 years and single Mom since my daughter was 2. I am 74 and the only medication I have had to take is for the chronic discomfort from hauling on people for those 25 years. I have well compensated cirrhosis. I had rotator cuff surgery in August of 24. The orthopedics told me I would need joint replacements some day. After my physical therapy was completed, I joined the senior center and signed up for some activity classes. The second day I went, I started to feel 'droopy' is my description of my arm and leg muscles. I thought it was just from starting the classes. Then I went to the next class "cardio drumming' and didn't think my legs were gonna hold me up. I had never felt like that before. It wasn't tiredness, it was like the muscles were so done in they were giving up. It took me a few days to get over it. From my doctor to the Rheumatologist. Who I wanted to talk to about my hands because they were hurting so much. I have been diagnosed with osteoarthritis and osteoporosis. During his evaluation I told him about the experience with the work out. So I had bloodwork for PMR but my markers were all negative. Because of the MRI findings of bursitis, fluid etc he diagnosed me with PMR and I started on Prednisone. Not a high dose, I think 20 mg but it helped tremendously with the discomfort and I was on it with tapering for a year. Some shoulder discomfort came back right away and I was relating it more to the arthritis because it occurred mostly with activity and was gone the next day. But now I don't know what to think. My shoulders and neck are so painful by the end of the day and I am waking at night from the pain. And I take MSContin 15mg at night to cover my other issues. It brings tears to my eyes it hurts so much. I have to come out on the sofa where I can sleep in a more elevated position without the pressure on my left shoulder (the worst one). By the time I was done with the prednisone my hair was falling out terribly, a side effect. I hated being on prednisone. It changed my personality I was so hyper on even lower doses. I won't take it again. The other meds are tough on the liver and I won't take them. I was in liver failure once and I won't risk it. I have a follow up with the Rheumatologist but right now I'm pretty miserable by the end of the day. It's such a weird pain because it starts in my shoulders and goes down into my biceps. The sharp pain in the middle of the night is directly on the shoulder because I can't sleep on my back so it's sides only. Some days I feel like I'm just a big whiny whimp. I don't think my family really understands how PMR makes you feel. Feels pretty lonely many days.

We all look for reasons that kicked in our PMR. In my case it was an accident with my storm door that caused a traumatic wound on my heal that required 7 stitches. The disease lay latent until it found a reason to kick in. When the symptoms appeared I knew exactly what I had.
I thought I had escaped its wrath at the age of 77 since my mother had it at about the same age. She remained on prednisone until her death at the age of 90. There were no alternatives at the time.
From reading responses on here there are cases where people are testing negative but still have the disease. You may be one of those people. It’s a strange illness!
If you hated prednisone side effects as I did check into the use of kevzara. Best wishes to you!

I liked what you said about us all looking for reasons why we have PMR. I blamed a new instructor at my senior’s exercise group, Covid and Flu shot ( although never reacted before), long term bursitis. But I was diagnosed at age 77 and there is a family history( brother and likely mother). Plus I had fibromyalgia in my 40’s and a maternal grandmother with rheumatoid arthritis. So likes my genes and my age.

I had never heard of PMR until I was diagnosed with it back in January. I thought it was just a stiff neck, so my primary doctor prescribed a muscle relaxer - which did absolutely nothing. I soon was in excruciating pain lifting my head off the pillow in the mornings, so was basically taking NSAIDs every 4 hours which helped but not by much. Two weeks later, I could barely walk - it had moved into my upper thighs. That's when the doctor knew what it was. She started me on 20 mg of prednisone which was wonderful then down to 10mg which was still wonderful. Then she me taper down to 9 mg and then 8mg. The 8mg was not doing it for me, so she put me back up to 9mg which is where I am now. I feel like at this point, some days are worse than others. I now have an appointment with a rheumatologist in late June. Hoping for a replacement drug for the prednisone. I just joined this group today - is anyone taking a different medication besides prednisone that is working?

@rebeccaheard
I am on Kevzara… so much better than the standard prednisone treatment!

@caroljeand - Thank you! I'll definitely mention that one to the rheumatologist.

@dd74
It will be okay dd...This is a good board to express on, and we know how you feel. Small things sometimes help accumulatively. I drink tumeric tea at night. I do movement exercises every day. Not strenuous, but aimed at being able to on and off the commode and get dressed. They helped me to finally be able to take a bath again, and that has helped the shoulder and arm pain. I looked on Facebook for PMR groups that used anti-inflammatory recipes. That helped so much. I said No a litte more. And this group has been so good for me. Everyone is rooting for you.

@tyl411
Thanks for the encouragement. I'm studying herbal/plant medicine and have been using Turmeric for about a year. I am not any good at FB, Instagram or any social platform. I would like to know what and how people are using alternative therapies for PMR or RA. I'll keep searching. Since I am one of those sero -negative types my science based brain wonders if this is EORA vs. PMR. Whatever, it's not fun and I'll keep searching for answers.
dd