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

Hi John, I am still waiting to get my results from my family doctor. She suggested that this sounds like PMR, however it has not been confirmed yet. I won't even get my blood work results or lumbar sacral spine xray results until April 7. In the meantime, she suggested that I do some reading and research on PMR.

The pre-diagnosis seems to fit, but who knows. So often these types of conditions mimic each other. It would sure be nice to get an answer. I have been tested for lupus, MS, and rheumatoid arthritis, both of which are negative. I have days of being so fatigued it is all I can do to get through the day to bedtime. I have days of feeling like I'm getting something (flu-ish or a cold, headache, sore eyes, feeling mildly ill, but it doesn't amount to anything). All of my first-degree family members had autoimmune diseases, and my naturopath has said that my body behaves as though I have an autoimmune disease, but it's just not been named yet. This most recent episode came on strongly in about October and I've been like a 900 year old person since. As mentioned in my original post, I am only 53 and typically very active and lithe, but lately I need help getting off the toilet. I don't want to have a disease or syndrome, but I sure would like an answer so that I can just deal with it already!

Hello @laurafin sorry to hear you are joining us (in a nice way 😉) and you are in the right place to get information. Sometimes the bloodwork may not really indicate PMR, as in my case and when it did the counts were only slightly elevated. Like you, I went from fully active to struggling to take toddler steps with virtually no indication in bloods that were barely elevated. As I have posted previously within 5 hours of going onto Prednisone I was back to walking and almost pain free. Good luck with your treatment and while prednisone has its side effects I believe the end result will be worth it. I am back to doing pretty much everything I was doing pre diagnosis.

Laura, so sorry to hear of your recent symptoms m. As John said, it sounds like more than PMR, but we’re not doctors/ clinicians. I too had my symptoms for months and based on some of my MRI’s a neurosurgeon was reaching out to suggest surgery on my lumbar spine. I have known of my bad back for years but knew instinctively that this was not due to my spine. My bloodwork was not a decisive factor, as I did not have the classic markers ( as John experienced too). Did your doc suggest trying Prednisone? Mine did to see if it worked, and as in John’s experience, I was symptom free within a day. I had never heard of PMR, was tested for cancer, lupus, MS, RA, and who knows what else, all came back negative.

? For you, is your stiffness bilateral? Is it better as the day progresses, only to return in full form in the morning? I hope you get the help you need and welcome to the club, though we all wish we weren’t afflicted, this is such a great support.

I am sorry you are having to wait so long for a doctors appointment. I am on my 3rd bout of PMR and my first was in my 50’s. For me, prednisone has always cleared my symptoms. I was amazed the first time I took it. However, I have a friend who has PMR and now also has rheumatoid arthritis. For her, starting on prednisone helped her physician see what symptoms were from PMR and which were still there and due to something else. I hope you have good docs, as it seems like you have a constellation of symptoms that will need sorting out. And, as we all have discovered, you will need to become your own advocate. This group is really helpful.

Hi Laura! I'm wondering if you have had Covid or the vaccine. My reason for asking is that some on your symptoms are similiar to my PMR but some remind me of the symptoms I had from mild Covid and the Monoclonal antibody infusion I had to keep the Covid symptoms from getting worse. I am on prednisone (down to 6mg now) but still have pain in my forearms and upper legs below my bottom. I have blood blisters below my skin on my arms and my hair is either breaking off or falling out. I can't tell which. My husband was in the hospital with Covid and has been experiencing diarrhea and stomach pain. Both of us had Covid in late December. Maybe your symptoms are not just PMR. The waiting for test results is hard, especially if you are in pain. Hold on, your Dr. will figure it out. Good luck!

Hi,
I’m Steve, 67, still working. I was diagnosed with PMR almost 6 years ago. I’ve had been on 2 mg of Preds for a while it seems to be my threshold. I just recently went up another half to 2.5 after some shoulder pains. What brought me to this site was I took the 1st dose of the Moderna vaccine for protection against COVID 19. I was good for about 4 days after the shot then came what seems to be a relapse of PMR. I thought that any side effects would be the next day after the vaccine. Just wondering if anyone has had PMR related side effects from the Moderna vaccine. I’m thankful the this site is available, it kinda lessens the effect of being stranded on the PMR island. Thanks in advance for any input.

Hi Steve @josteman, Welcome to Mayo Clinic Connect. My PMR is currently in remission and I've had both Pfizer vaccines and the first Shingrix vaccine with minor side effects. The worst for me was day 2 after the 2nd Pfizer vaccine. I had extreme fatigue but it got better the next day. There is another discussion where members with PMR are discussing COVID vaccines and PMR.

PMR and Corona Virus (COVID-19) vaccine: https://connect.mayoclinic.org/discussion/pmr-and-corona-virus-vaccine/

Sorry to hear you haven't been able to taper off of prednisone for 6 years. My first occurrence lasted 3-1/2 years before I could taper off and then 6 years later it came out of remission and I was back on prednisone for another 1-1/2 years. Have you had a chance to discuss the PMR flare after the vaccine with your doctor or rheumatologist?

e a isort of unrelated question..i keep reading peoples bio's and the one thing in common is that they go into remission..nobody says they are cured!! my rhematologist speaks about the disease lasting a year or two and then resolving..who is correct?

Latest Mayo research states that average duration of PMR is 5.9 years. I have no idea why the 1-2 year story persists!