1. < Polymyalgia Rheumatica (PMR)

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

Posted by Ethan McConkey, Moderator @ethanmcconkey, Dec 18, 2019

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?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

jfannarbor | @jfannarbor | Jun 17, 2022
In reply to @jfannarbor "I looked in PubMed and looked at all articles (63) that addressed prednisone AND low dose..." + (show)
@jfannarbor

I looked in PubMed and looked at all articles (63) that addressed prednisone AND low dose AND longterm and arthritis I didn't find the article I remember but I think he was the first author of the following article that addressed the subject we are looking at. The problem with finding the one I remember is many of the articles include other drugs to treat arthritis and the definition of "low dose" prednisone had changed over the years from < 15 to < 10 mg to now <5 mg. As I noted in my first post on this subject, I am on 2.5 mg of prednisone a day for over 5 years and it has helpe d me reduce the occurance of PMR. Below is the abstract of the article that I found and basically the authors noted in the last sentense of the abstract that low doeses OK but with brusing and thin skin as adverse effects. I have experienced this, but it is a minor problem. I should note that I am not your average patient since I am addicted to extensive exercise. Another interesting piece of information is the journal issue that the following abstract comes from had many articles on low dose prednisone to treat arthritis

CER5095
2011 Vol.29, N°5 ,Suppl.68
PI 0130, PF 0138
Paediatric Rheumatology

Free to view
(click on article PDF icon to read the article)

PMID: 22018199 [PubMed]

Received: 15/09/2011
Accepted : 15/09/2011
In Press: 22/10/2011
Published: 22/10/2011
Abstract

This article summarises the experience of one academic rheumatologist in treatment of patients with rheumatoid arthritis (RA) over 25 years from 1980-2004 with low-dose prednisone, most with <5 mg/day over long periods. A database was available which included medications and multidimensional health assessment questionnaire (MDHAQ) scores for physical function, pain, and routine assessment of patient index data (RAPID3), completed by all patients at all visits in the infrastructure of care. Most patients were treated with long-term low-dose prednisone, often from the initial visit and indefinitely, and with methotrexate after 1990. The mean initial prednisone dose declined from 10.3 mg/day in 1980-1984 to 3.6 mg/day in 2000–2004. Although no formal criteria were used to determine the initial dose, prednisone doses were higher in patients who had more severe MDHAQ/RAPID3 scores, as expected, reflecting confounding by indication. Similar improvements were seen in clinical status over 12 months in patients treated with <5 vs. ≥5 mg/day prednisone, and maintained for >8 years. Adverse effects were primarily bruising and skin-thinning, with low levels of hypertension, diabetes, and cataracts, although this information was based only on self-report rather than systematic assessment by a health professional. These data reflect limitations of observational data. However, a consecutive patient database may provide long-term information not available from clinical trials. The data document that prednisone at doses <5 mg/day over long periods appears acceptable and effective for many patients with RA at this time. Further clinical trials and long-term observational studies are needed to develop optimal treatment strategies for patients with RA with low-dose prednisone.

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I just ran across another a randomized controlled clinical trial on low-dose prednisone. In this case, it was 10 mg for two years. The problems seen by the prednisone group do not seem bad at all. It noted that prednisone helps osteoarthritis, especially in the first 6 months. The reference is: Low-Dose Prednisone Therapy for patients with Early Active Rheumatoid arthritis: Clinical Efficacy, Disease-Modifying Properties, and side effects Ann Intern Med 2002; 136:1-12

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patzmar | @patzmar | Jun 18, 2022

I was diagnosed with PMR a year ago. Had been doing ok on a fairly low dose of prednisone. Had a flare up and increased dosage to 10 mgs for a few weeks. Began to have symptoms of GCA. So dosage was increased to 60 in preparation for GCA test. Wow, I felt great. Nothing hurt. My test was negative. I wondered if anyone has had these symptoms and tested negative. It can be such a scary thing. I still have the strange head pain and tingly scalp. My vision is a little off as well. Have begun to taper back down. Am at 40mgs a day now. Dread having pain return eventually as I feel so good now.

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3 replies
aspine | @aspine | Jun 18, 2022
In reply to @patzmar "I was diagnosed with PMR a year ago. Had been doing ok on a fairly low..." + (show)
@patzmar

I was diagnosed with PMR a year ago. Had been doing ok on a fairly low dose of prednisone. Had a flare up and increased dosage to 10 mgs for a few weeks. Began to have symptoms of GCA. So dosage was increased to 60 in preparation for GCA test. Wow, I felt great. Nothing hurt. My test was negative. I wondered if anyone has had these symptoms and tested negative. It can be such a scary thing. I still have the strange head pain and tingly scalp. My vision is a little off as well. Have begun to taper back down. Am at 40mgs a day now. Dread having pain return eventually as I feel so good now.

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Typically, if you are on the right dose of prednisone, for your PMR, you should not be in pain. You don't say what your dose was before the suspected GCA. But for PMR, you shouldn't need the same high dose that you would get for GCA. Also, I read in Kate Gilbert's book recently, that a study done in 2012 found that 28% of people whose biopsies were negative, still met the criteria of the American College ofRheumatology for the classification of GCA. You might want to discuss this with your doctor. Did they do an ultrasound before they did the biopsy? I'm just wondering if that would have shown anything. I'm not a medical expert btw, so I don't want to upset you. It's just the questions I would be asking if it were myself going through this. I wish you all the best.

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aynos | @aynos | Jun 18, 2022

Greetings All,
My name is Sonya. I am a 57 y.o. Black female. My doctor recently requested labs for PMR. I am still awaiting my results. However, I am so ANGRY that a colleague of my doctor’s had to bring this possibility to her attention..😡

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1 reply
aynos | @aynos | Jun 18, 2022
In reply to @patzmar "I was diagnosed with PMR a year ago. Had been doing ok on a fairly low..." + (show)
@patzmar

I was diagnosed with PMR a year ago. Had been doing ok on a fairly low dose of prednisone. Had a flare up and increased dosage to 10 mgs for a few weeks. Began to have symptoms of GCA. So dosage was increased to 60 in preparation for GCA test. Wow, I felt great. Nothing hurt. My test was negative. I wondered if anyone has had these symptoms and tested negative. It can be such a scary thing. I still have the strange head pain and tingly scalp. My vision is a little off as well. Have begun to taper back down. Am at 40mgs a day now. Dread having pain return eventually as I feel so good now.

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Good for you @patzmar !! I am so happy you received the medical care you needed. I thought I was the only person on the planet dealing with, what I call the Mystery Disease. No one knows much about it…

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deniseinca | @deniseinca | Jun 19, 2022

Finally after three long years and many medications I am drug free! PMR and GCA are tough i thought i would never be free of prednisone, 7 days prednisone free today. My hips are a little sore and this morning my jaw was very painful but i am going to give it a month for my body to settle from 3 yrs of meds before I consider any of my pain.
My rheumatologist is not going to prescribe prednisone again if it does return she has another biological to try!
Wish me good luck for the next 3 weeks that i stay PMR and GCA free,

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suetex | @suetex | Jun 19, 2022

To @aynos: I was at a well respected rheumatologist for 4 yrs (!) with no diagnosis, got fed up and switched docs and the new one took 15 mins to diagnose PMR. 20 mg of pred brought relief in 2 days. So there is no accounting for knowledge and expertise.

To Denisinca: Best of luck and I know we are all pulling for you. Sounds like you have a good doc.

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kmeikle1 | @kmeikle1 | Jun 19, 2022
In reply to @patzmar "I was diagnosed with PMR a year ago. Had been doing ok on a fairly low..." + (show)
@patzmar

I was diagnosed with PMR a year ago. Had been doing ok on a fairly low dose of prednisone. Had a flare up and increased dosage to 10 mgs for a few weeks. Began to have symptoms of GCA. So dosage was increased to 60 in preparation for GCA test. Wow, I felt great. Nothing hurt. My test was negative. I wondered if anyone has had these symptoms and tested negative. It can be such a scary thing. I still have the strange head pain and tingly scalp. My vision is a little off as well. Have begun to taper back down. Am at 40mgs a day now. Dread having pain return eventually as I feel so good now.

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What kind of test did you take? Based on your continuing symptoms I'd still be suspicious. It can be hard to diagnose GCA.

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kmeikle1 | @kmeikle1 | Jun 19, 2022
In reply to @aynos "Greetings All, My name is Sonya. I am a 57 y.o. Black female. My doctor recently..." + (show)
@aynos

Greetings All,
My name is Sonya. I am a 57 y.o. Black female. My doctor recently requested labs for PMR. I am still awaiting my results. However, I am so ANGRY that a colleague of my doctor’s had to bring this possibility to her attention..😡

Jump to this post

First I'd say that many doctors don't understand PMR and falsely believe it only lasts two years. Unless they work with you on tapering, they're likely to have you taper too quickly. But, in your case, your doctor may have been thrown off by your age. The average age of onset is 72 and I think it's more common in causcasians so you don't fit the profile. All of us need to do our own research so that we can advocate for ourselves. So sorry that you are dealing with this.

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majryan61 | @majryan61 | Jun 27, 2022

Hello- I was recently diagnosed with PMR Dec 2021. This was after 4-5 mins of working up my symptoms as if carpel tunnel, shoulder inquiry etc. i finally convinced my FP to run the inflammation markers ( ESR/CRP) and low and behold they were extremely high. I started on 15 mg of Prednisone a day and my early May this year I was down to 9mg with no early morning symptoms. Then, my brother died tragically and it trigger the PMR. 3 wks post event I began with 3 trigger fingers( right index, left thumb and right pinky). I went to a ortho urgent care and got Kenalog for the index and thumb. The pinky finger was tolerable.

So, my question yo you is this

1) has anyone developed triggers from PMR?
2) I awake sore in the morning in my upper arms muscles and I take 14 mg of Prednisone daily since the flare up. Should I break it up?
3) Does any raise the Prednisone does be a couple of mg’s when they have flare up without connecting with their provider?

4) how do you folks deal with those days when your PMR wants to plan mean on a given day? It is so depressing and I don’t want to be that whiner to those that don’t understand the disease but sometimes it feels better to just stay in place for a bit. Thoughts?

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