1. < Polymyalgia Rheumatica (PMR)

PMR Anyone?

Posted by olegraymare @olegraymare, Jan 4, 2018

I was diagnosed with polymyalgia rheumatica about a year ago. I WAS a very active 69 year old female all of a sudden, not being able to get out of bed on her own and having severe hip flexor pain. As is customary, after waiting 3 months to see a rheumatoid arthritis doctor, she administered the C-reactive protein test and I was VERY high. So, she diagnosed me with PMR and prescribed 15 mg of prednisone. I don't like taking meds (as most of us don't), but I was in pain and had no quality of life. I'm a swimmer and could hardly dog paddle ! One year later, I have been weaning off the 15 mg down to 1 mg. My RA said that now it's a matter of determining if I have PMR or arthritis ... so, she prescribed 7.5 mg of meloxicam for a month. I will say my shoulder pain seems better, but my hip flexors are awful !! I don't want to go back on steroids - the devil drug. I would like to get to the "crux" of what is CAUSING my inflammation??? No doctors seem to address that? What would be my next step? A nutritionist? I am leary of taking supplements, as well. Thank you for any help or sharing your experience. Weird disease ... I just want my old life back - being able to move without pain, etc. Too much to ask?

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

opus640 | @opus640 | Oct 16, 2021
In reply to @johnbishop "Hi @opus640, Welcome to Connect. My PMR is currently in remission. I've had 2 occurrences of..." + (show)
@johnbishop

Hi @opus640, Welcome to Connect. My PMR is currently in remission. I've had 2 occurrences of PMR and both times was started at 20 mg prednisone and within a short period of time the pain was pretty much zero for me. We each know our own pain scale and have to trust our body when it's too much. I kept a daily pain and prednisone dosage log which I used when tapering. I only tapered when my morning pain was a 0 or 1 sometimes a 2 if I was anxious to lower my dosage. I think it's normal to have some mild aches and pains when you first get up and they normally go away when you start moving some...at least for me they did.

You mentioned you haven't seen a rheumatologist yet and were diagnosed by your PCP and put on steroids for five days. Are you taking prednisone? How much if you don't mind my asking?

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Yes, my Primary care physician put me on prednisone and referred me to the rheumatologist. I could not get an appointment with them for another two weeks so she put me on prednisone to see if I could get some relief from this pain. I just increased my prednisone from 15 to 20 mg today. Is it normal to have that much pain before treatment with this disease?

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Oct 16, 2021
In reply to @opus640 "Yes, my Primary care physician put me on prednisone and referred me to the rheumatologist. I..." + (show)
@opus640

Yes, my Primary care physician put me on prednisone and referred me to the rheumatologist. I could not get an appointment with them for another two weeks so she put me on prednisone to see if I could get some relief from this pain. I just increased my prednisone from 15 to 20 mg today. Is it normal to have that much pain before treatment with this disease?

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It's kind of hard to say since each person feels pain a little differently. For me it gradually got worse over a period of a few months until I couldn't stand it anymore and went to my PCP who setup an appointment with a Mayo rheumatologist. My wife pushed me to the appointment in a wheel chair because I was unable to walk due to the pain. After seeing the rheumatologist in the morning he prescribed the 20 mg prednisone which we picked up at the Mayo pharmacy and then we went to lunch and I took my first prednisone tablet. My appointment was at 2:30 in the afternoon and I was able to walk to the appointment and I felt great. I really couldn't believe how fast it worked to make the pain go away. The one thing my PCP and the rheumatologist asked was if I had any pain or tenderness in the scalp or temple areas because they were concerned I might also have Giant Cell Arteritis (GCA). Fortunately for me, I didn't have GCA.

Here are a couple of articles I thought you might find helpful.
-- Diet and Lifestyle Changes That Can Aid in the Treatment of Polymyalgia Rheumatica: https://arthritissj.com/diet-and-lifestyle-changes-that-can-aid-in-the-treatment-of-polymyalgia-rheumatica/
-- Patients' views on the causes of their polymyalgia rheumatica: a content analysis of data from the PMR Cohort Study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5278275/

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opus640 | @opus640 | Oct 16, 2021

Thank you for your responses. I have been having the severe early morning pain for about 6 weeks now. It came on suddenly. The pain has always gotten more tolerable as the day goes on, from an 9 to a 3 or 4. I can function by about 1 or 2 pm, but the mornings are just impossible. I have read up on the GCA symptoms. So far, I have not experienced anything pointing to that, but I know it is something to be on the lookout for. Glad you are in remission from this wretched stuff, and thank you for the articles. I know diet has a huge impact on inflammation for me. I have been gluten free for about 22 years now. It really made a difference in my arthritis pain. I need to start weeding other things out now too I guess. I am hoping to retire in a little over a year and I really hope to be in the position to enjoy myself and be active. Hopefully I will get this under control by then!

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Oct 16, 2021
In reply to @opus640 "Thank you for your responses. I have been having the severe early morning pain for about..." + (show)
@opus640

Thank you for your responses. I have been having the severe early morning pain for about 6 weeks now. It came on suddenly. The pain has always gotten more tolerable as the day goes on, from an 9 to a 3 or 4. I can function by about 1 or 2 pm, but the mornings are just impossible. I have read up on the GCA symptoms. So far, I have not experienced anything pointing to that, but I know it is something to be on the lookout for. Glad you are in remission from this wretched stuff, and thank you for the articles. I know diet has a huge impact on inflammation for me. I have been gluten free for about 22 years now. It really made a difference in my arthritis pain. I need to start weeding other things out now too I guess. I am hoping to retire in a little over a year and I really hope to be in the position to enjoy myself and be active. Hopefully I will get this under control by then!

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Good luck with your appointment and treatment! Hope you will let us know what you find out after your appointment.

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scpartain | @scpartain | Oct 17, 2021
In reply to @opus640 "I have recently been diagnosed with PMR by my primary care physician. I have an appointment..." + (show)
@opus640

I have recently been diagnosed with PMR by my primary care physician. I have an appointment with a rheumatologist in two weeks, and have been on steroids for five days. They have not shown any improvement in my morning pain as of yet. I am wondering about the level of pain I am experiencing in the morning. I work in healthcare and we use the 1-10 scale of pain. My pain level is almost always an 8 or 9 in the morning when I get up. I literally cannot get out of bed and to the bathroom without crying and cannot get dressed without help. Is this normal or am I just being a big baby about all of this? I am no stranger to pain ( bilateral knee replacements) and have always thought of myself as pretty tolerant to it, but I am beginning to wonder if I am just getting overly dramatic in my old age ( I'm 63). It's just so strange to be so crippled in the mornings, yet be able to function fairly well by the afternoon. I feel like I'm stuck in an excruciating 'Groundhog Day' movie!

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Your struggle with PMR completely mirrors my own experience. I had my first bout thirteen years ago in 2008. It recurred in January of this year after I received the Pfizer vaccine for Covid. Like you, I could hardly get out of bed and it was difficult even to use the bathroom, dress myself, or comb my hair. I felt like crying every morning. However, by afternoon of each day, things improved and I was able to function. With the help of a skilled rheumatologist, I managed to get the symptoms under control with prednisone. I hope you find relief soon. Best of luck in your journey.

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1 reply
norieaugustine | @norieaugustine | Oct 17, 2021
In reply to @opus640 "I have recently been diagnosed with PMR by my primary care physician. I have an appointment..." + (show)
@opus640

I have recently been diagnosed with PMR by my primary care physician. I have an appointment with a rheumatologist in two weeks, and have been on steroids for five days. They have not shown any improvement in my morning pain as of yet. I am wondering about the level of pain I am experiencing in the morning. I work in healthcare and we use the 1-10 scale of pain. My pain level is almost always an 8 or 9 in the morning when I get up. I literally cannot get out of bed and to the bathroom without crying and cannot get dressed without help. Is this normal or am I just being a big baby about all of this? I am no stranger to pain ( bilateral knee replacements) and have always thought of myself as pretty tolerant to it, but I am beginning to wonder if I am just getting overly dramatic in my old age ( I'm 63). It's just so strange to be so crippled in the mornings, yet be able to function fairly well by the afternoon. I feel like I'm stuck in an excruciating 'Groundhog Day' movie!

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Prednisone doesn't stay in your system overnight so you can have all that pain in the morning.
I find if I take half my dose in the morning and other half in the evening I feel better. Usually between 7 and 8 in the morning, then between 7 and 8 in the evening.

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opus640 | @opus640 | Oct 17, 2021
In reply to @norieaugustine "Prednisone doesn't stay in your system overnight so you can have all that pain in the..." + (show)
@norieaugustine

Prednisone doesn't stay in your system overnight so you can have all that pain in the morning.
I find if I take half my dose in the morning and other half in the evening I feel better. Usually between 7 and 8 in the morning, then between 7 and 8 in the evening.

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Thank you, I will try that.

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kmeikle1 | @kmeikle1 | Oct 18, 2021
In reply to @opus640 "Thank you, I will try that." + (show)
@opus640

Thank you, I will try that.

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Most recommend 1/3 dose at night and 2/3's in the morning if you're doing a split dose

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norieaugustine | @norieaugustine | Oct 18, 2021
In reply to @kmeikle1 "Most recommend 1/3 dose at night and 2/3's in the morning if you're doing a split..." + (show)
@kmeikle1

Most recommend 1/3 dose at night and 2/3's in the morning if you're doing a split dose

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Thanks, I'll try that.

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Deb | @dluckey1 | Oct 18, 2021

Sorry you're having morning pain. You don't mention how much prednisone you're on? Typical starting dose is at least 15 to 20 mg. I know not every rheumatologist start at that level, but I did not find any relief at 10mg which I was started on or 15mg, but did find relief at 20 mg - which is a common starting dose to begin with. Let your doctor know that you're not having relief and see if you can increase it.

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