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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Polymyalgia Rheumatica (PMR) | Last Active: Sep 10 12:05pm | Replies (1906)Comment receiving replies
Hello all. My name is Jeff from Australia and I have recently been diagnosed with PMR. It likely started around December 2020 although may have been lurking around earlier. From Christmas, my joints started to become painful and stiffen, particularly in the hips, knees and shoulders. It eventually progressed to elbows and even my bicep muscles. I saw my GP on Jan 21st as the stiffness and pain were starting to impact my routines/life. Due to the difficulty of getting into my regular GP again I went to a “walk in” GP to have blood tests done. These came back with a slightly high CRP (55) and as we were waiting on other tests it was another five days before I was called back in for them. That GP said he didn’t know what it was so I said well are you saying I have to live with it and he shrugged his shoulders. Needless to say I won’t be seeing them again. In the meantime I tried two acupuncture sessions to no avail. This eventually led to finding (thanks to my wife) information about PMR and pretty much self diagnosed myself. At this point I could barely walk and couldn’t dress myself. I printed a Mayo document on PMR to take into my GP on the 8th February appointment in case she didn’t come up with the possibility of PMR. Fortunately she did and put me on Prednisolone, 50mg. Within five hours I was close to walking semi normally. As I had been on Prednisolone many years ago for an unrelated issue I was aware of its hazards. Although the GP said to take 50mg for three days I decided to drop the second days dose to 25mg and phone the doctor. I already had the dosage and weaning schedule so I suggested to her to start the following day on 15mg for three weeks then 12.5mg and so on. Into my second week on 15mg now and I am getting up with only slight discomfort in hips and shoulders for the first hour or so. I am increasing my vitamin D3 and still taking Caltrate bone and muscle daily with vitamin B12 twice a week. See a rheumatologist in June as that is the earliest I can get into one. I will also talk with the GP regarding taking Fosamax. Thanks for bearing with me with the long post.
Replies to "Hello all. My name is Jeff from Australia and I have recently been diagnosed with PMR...."
Hello Jeff @legendts, Welcome to Mayo Clinic Connect. Thank you for sharing your story with PMR. I have PMR but it is currently in remission. Your story sounds much like mine except I was not as proactive and advocating for myself. I didn't bother to see a doctor about it until like you I could barely walk and couldn't drive myself to the doctor. I was fortunate that my primary care sent me directly to a Mayo rheumatologist who diagnosed me right away and started my on 20 mg prednisone. Like you, within 4 or 5 hours of my first dose of prednisone I could walk again. It did take me 3-1/2 years to taper off of prednisone though. It is great that you are learning as much as you can about the condition.
I started looking at diet and lifestyle changes for helping with my autoimmune diseases after reading Dr. Terry Wahls book – The Wahls Protocol. She has an amazing story about how diet helped her MS symptoms – https://terrywahls.com/about/about-terry-wahls/
Here is a good article on Medical News Today that offers some suggestions.
What to eat if you have polymyalgia rheumatica: https://www.medicalnewstoday.com/articles/321683
Can you let us know how your appointment goes with your rheumatologist in June?
Hi @legendts . If you find that the prednisone is not enough, I am also on a medication called methotrexate (not sure if it is the same name in Australia) to try to help with symptoms. Honestly though, this climate (I'm from Canada) is killer on me!!
Hi Jeff,
Welcome. You will be grateful for finding this blog and hearing the stories and wisdom along your journey. You were wise to print off a Mayo document and take it in. I was diagnosed with PMR, August of 2020 after retiring from the CDC. I was quite sure that I had PMR, although I did question at first whether the pain was a result of my osteoarthritis. I went to 2 different GP's, one that wasn't even sure what PMR was and the other one that said I couldn't possibly have it because my ESR and CRP were in the normal range. I too, had to take information showing that around 20% of people have normal values and that the diagnosis of PMR should not rest on these inflammatory markers. I was able to find a rheumatologist that concurred with me. She put me on prednisone and I have been tapering down, now at 3 mg. I don't ache like I did, although a bit stiff. I try to do yoga 3 or 4 times a week, exercise everyday and eat for the most part an anti-inflammatory diet. Hoping all that helps. Just a word of caution - be careful about tapering too quick. My dexa scan did show that i have osteopenia so I take bone strength and walk with a weighted vest. Trying desperately not to take fosamax, but may have to one day! I wish you well.
BTW - I have had both of my moderna shots and so far so good for those wondering about the covid vaccine!
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Hi Jeff, glad you found this forum and most importantly you are getting relief from your PMR. I too had a long road to discovery as have many others who post on this forum.
I’d like to warn you of too swiftly tapering off the p. As I and many others have experienced, a rebound of the PMR or even worse ( in my case) GCA, which has really serious consequences if not treated. So, take it slowly is my suggestion as you go down. I’m tapering at .5 mg every three weeks and just hit 9 mg last week. We all desperately want to off the P, that’s no lie . But going too fast can come to bite you. Glad your feeling better. Keep reading on these forums, lots to learn! Karen