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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Welcome to the Polymyalgia Rheumatica (PMR) group on Mayo Clinic Connect.
Meet other members who are dealing with PMR. Let’s learn from each other and share stories about living well with PMR, coping with the challenges and offering tips.We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Grab a cup of coffee or beverage of choice and let’s chat. Why not start by introducing yourself? What's your experience with PMR? How are you doing today?
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That's the frustrating part, trying to determine the cause. I will talk to my Dr about trying a short course of prednisone. I appreciate your comments.
Yes, I agree with scpartain. Part of the diagnosing PMR (as there are no definitive tests to do that) is whether or not nsaids and pain killers help your pain. And also whether or not prednisone helps your pain. Try the Tylenol and Advil first. If they help your pain, it is most likely NOT PMR. If they do not help, that points to PMR. If the prednisone gives you almost instant relief (assuming the doctor gives you an adequate dose (most of us get 15 to 20 mg in the beginning) then it's a pretty good chance it IS PMR. Some of the common symptoms of PMR is pain in the shoulders and upper arms, thighs, buttocks, and all of us are a little bit different in other areas. Further, many of us feel weakness in our legs or a heavy (like lead) feeling in our legs at times. Many of us have stiffness first thing in the morning, some to the point they cannot get out of bed immediately without working out the stiffness. Again - we are all different. Thus, some of us when first diagnosed have very elevated bloodwork indicating inflamation. ESR and CRP are the two most common indicators for this. There are others. I hope this information is helpful to you. Good luck to you.
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3 ReactionsAbout a month after coming off of my prednisone taper for PMR, I started to have some jaw discomfort and occasional mild headaches. I did a bit of research and discovered those could be symptoms of GCA. I quickly requested an appointment with a rheumatologist and he immediately scheduled me for a temporal biopsy. The biopsy confirmed the diagnosis of GCA. I then started another 10 month prednisone taper (beginning at 60mg daily) and had my first Actemra infusion. I have had 12 infusions and will continue those for at least another year before reassessing.
Regarding diagnosing GCA, read page 4 of this document:
https://www.vasculitisfoundation.org/wp-content/uploads/2021/07/2021-ACR-VF-Guideline-for-Management-of-Giant-Cell-Arteritis-and-Takayasu-Artheritis.pdf
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2 ReactionsWhen my headaches first started in 2019, I had a temporal artery biopsy on both sides of my head and the results were negative. Since then my headaches have become more frequent and painful. My rheumatologist advises against a 2nd biopsy and believes it's not GCA based on my blood work etc. Thank you for your comments and the article.
Tylenol and ibuprofen used to help but lately they don't relieve the pain. I'll talk to my Dr about a trial of prednisone. Thanks much.
I have a question for anyone and everyone. Have you had ANAs done and were any high? My single strand DNA has consistantly high (1100 to 600- cut off 99) with the double strand (the one they use to follow Lupus) either a high normal or just above the cut off. Everything else test normal. My sed rate has been normal for several years and my CPR just a little high. No one seems to be able to attach the high SSDNA to anything. I had one PA say "We should stop doing those!" (She was one of the reasons I left that Rhuemy.) Really wondering what it all means.
I am curious to learn how long it may take to taper off. My husband is currently on 24mg of methylprednisolone (which I understand as stronger than prednisone, so his dosage is equivalent to ~30mg prednisone). I understand that every patient is different, but I am hoping that he doesn't have to take it for more than a year.
Thank you for the support group. I have had pmr for six or seven years, having reduced my prednisone to 3 mg a day. In recent months muscle and joint aches have increased and I am up to 5 mg a day. My biggest problem is pain in my lower right hand, especially from wrist to fingers, which is worst in the morning, remains constant throughout the day and decreases significantly by bedtime. With sleep and stiffness, the pain returns and disturbs sleep. Any advice about over the counter drugs or creams to treat the pain would be greatly appreciated. Thank you. Theodore.
My doctor suggested Tylenol for pain and stiffness as it doesn’t interact with prednisone
Since it is just your hand, (I wouldn't reccomend it for a larger part of your body) you might try the OTC diclofenic cream. It might help the pain at night.