Polymyalgia rheumatica

Posted by barbararene @barbararene, Feb 13, 2017

I have been diagnosed w poly myalgia rheumatica (pmr). Am taking 5 mg of predisone, was taking 10mg.
Every time I go on a low dose, symptoms come back. I can’t take pain meds, but do drink wine to ease pain, although I’m told no alcohol w prednisone. Anything you can share as far as info

Hello, I was diagnosed with PMR nearly a year ago.I woke one morning not being able to move very well in my shoulders and neck, by the next day I could hardly move, turning in bed was a mission as my hips and thighs felt like a dead weight and it was difficult to get comfortable. After trips to have xrays and scans I then had blood test to show the inflammation was very high and then was diagnosed with PMR. I was started on 20mg of Prednisone which gave me almost immediate relief. My symptoms have never completely gone away even on the higher dose, I still have different levels of pain in my shoulders, neck and collarbone. My mood has changed to being very reactive and easily upset and I have also put on around 6 kilos with the addition of the moon face. I also have bouts of intensive sweating, to begin with this was just at night but now happens at random times. I have reduced my dose to 4mg and my symptoms have become worse, I do not want to increase my dosage as I really want to get off this horrible drug. It is nice to be able to read your comments and have someone to feel normal with. Any suggestions would be very much appreciated.

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Hi @anniegal, thank you for the private messaages. I would like to welcome you to Mayo Clinic Connect. You mentioned you figured out how to subscribe to the discussion but now you would like to know how to post a question or observation. There is a link in the left column at the bottom of every page on Connect – Get Started on Connect. This guide has step by step instructions for how to get the most out of Connect. Here is a link to the How to Take Part in a Discussion topic with step by step instructions:
https://connect.mayoclinic.org/get-started-on-connect/#take-part-in-a-discussion
Are you able to share what brings you to Connect? Do you have any questions or observations about polymyalgia rheumatica (PMR)?

John

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I am by nature rather an impatient person, however, I have had to force myself to acquire the attribute of patience with this ailment. If I feel cranky, I try to be by myself as much as possible. I am now down to 5mg of prednisone and would like to gat off completely but know that I cannot. I am very slowly tapering. I try to keep my mind engaged in activities, so that I can forget PMR for a while, or at least push it into the background. I am working on a talk to a group of people (not PMR) on the 17th. I read varied materials, fiction as well as non-fiction. I volunteer at the library and at the local Nature Center, and am somewhat involved in local political issues. I have a dog to take care of and be a companion. I try to think of ways that I might increase my activity and strength. Do you have a healthy diet e,g, no sugar. Sugar is sure to bring on flare ups. Look for anti-inflammatory foods and spices. Do get some exercise, even if it just alking around the house. I have found that in a day, I can take 8,000 steps while housebound. That is, if I consciously try to do it.

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@lindapc

Hello, I was diagnosed with PMR nearly a year ago.I woke one morning not being able to move very well in my shoulders and neck, by the next day I could hardly move, turning in bed was a mission as my hips and thighs felt like a dead weight and it was difficult to get comfortable. After trips to have xrays and scans I then had blood test to show the inflammation was very high and then was diagnosed with PMR. I was started on 20mg of Prednisone which gave me almost immediate relief. My symptoms have never completely gone away even on the higher dose, I still have different levels of pain in my shoulders, neck and collarbone. My mood has changed to being very reactive and easily upset and I have also put on around 6 kilos with the addition of the moon face. I also have bouts of intensive sweating, to begin with this was just at night but now happens at random times. I have reduced my dose to 4mg and my symptoms have become worse, I do not want to increase my dosage as I really want to get off this horrible drug. It is nice to be able to read your comments and have someone to feel normal with. Any suggestions would be very much appreciated.

Jump to this post

Hello @lindapc, welcome to Mayo Clinic Connect. Thank you for sharing your story. My first occurrence of PMR lasted 3 years. I was able to gradually taper my dosage down but the last 6 months I was going between 1 mg and 1/2 mg dosage of prednisone. I did have some pain when lowering the dosages but if it was tolerable I tried to stay on the lower dose. One of the things that helped me was to maintain some sort of mild exercise to keep the stiffness away or at least at a minimum. I too had a lot of weight gain with my first occurrence of PMR – about 50 to 60 pounds. It does require some lifestyle changes to keep from gaining extra weight.

Have you discussed the new sweating symptoms with your doctor? I did not have the sweating with my occurrences of PMR but it is one of the known symptoms.
https://www.nhsinform.scot/illnesses-and-conditions/muscle-bone-and-joints/conditions/polymyalgia-rheumatica

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I am surprised that you can drink wine for relief. I do have an occasional glass, small, with dinner, however, If I have more than that, I either have trouble sleeping a get a leg cramp during night.

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Glad to find somebody to compare different problems with Polymialgia.I was diagnosed over four Years ago,it started as an uncomforable pain i tought came for the Fact i was on Vacation.Not my Mattress etc. I started on a high dose of predison and now i am at 2.5 twice a day. My Dr. tells me i will never get of Predison.Intersting reading different Symptoms.My Pain is somewhat under Controll but i have severe pain in my right Arm.This is the same Problem i had in the beginning but my Dr. tells me it is Carpel Tunnel Sindrom,I had a Cortison Shot by a different Dr but the Pain returned.
Also i also have a recuring Bladder Infection that nobody can explaine.I wonder also if anybody has thinning of the Skin,mostly the Arms.The slightes bump gives me a nasty bruise.Going near a Rosebush is out of the Question.As for the Question about Alcohol,i drink very little,seem to have lost my tast.Hope to hear more of your Ideas,always glad for the Information.Judy

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@peanuts1

Glad to find somebody to compare different problems with Polymialgia.I was diagnosed over four Years ago,it started as an uncomforable pain i tought came for the Fact i was on Vacation.Not my Mattress etc. I started on a high dose of predison and now i am at 2.5 twice a day. My Dr. tells me i will never get of Predison.Intersting reading different Symptoms.My Pain is somewhat under Controll but i have severe pain in my right Arm.This is the same Problem i had in the beginning but my Dr. tells me it is Carpel Tunnel Sindrom,I had a Cortison Shot by a different Dr but the Pain returned.
Also i also have a recuring Bladder Infection that nobody can explaine.I wonder also if anybody has thinning of the Skin,mostly the Arms.The slightes bump gives me a nasty bruise.Going near a Rosebush is out of the Question.As for the Question about Alcohol,i drink very little,seem to have lost my tast.Hope to hear more of your Ideas,always glad for the Information.Judy

Jump to this post

Hi Judy @peanuts1, I see you have been a member for awhile but this is your first post. I would like to welcome you to Mayo Clinic Connect and thank you for sharing your symptoms and treatments. Interesting that your doctor would tell you that you will never get off of prednisone. Is your doctor a rheumatologist? I was first diagnosed with polymyalgia rheumatica (PMR) in 2007 and placed on 20 mg prednisone dosage. It took me 3 years before I was able to taper off of prednisone with minimal pain. My PMR stayed in remission for 6 years before coming back in 2016. Again I started on 20 mg prednisone but was able to taper off in about a year and a half when my PMR went into remission again. I also have carpal tunnel syndrome in my hands but It doesn't cause me much pain so far.

I also have thin skin and bruise easily which I mostly attribute to my old age (75). I do have thin bones (osteoperosis) which I think is a side effect of the prednisone. Mayo Clinic has some information on thin skin here:
https://www.mayoclinic.org/healthy-lifestyle/healthy-aging/expert-answers/thin-skin/faq-20057753
You mentioned that your pain is mostly under control except you have some pain in your right arm and the doctor thought it was carpal tunnel syndrome. This site might help explain it and offer some possible insight.
https://orthoinfo.aaos.org/en/diseases–conditions/carpal-tunnel-syndrome/
Have you discussed trying to taper off prednisone with your doctor? That was the number one goal given to me by my rheumatologist even though he mentioned some people may never be able to completely taper off of prednisone.

John

Liked by lioness

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@johnbishop

Hi Judy @peanuts1, I see you have been a member for awhile but this is your first post. I would like to welcome you to Mayo Clinic Connect and thank you for sharing your symptoms and treatments. Interesting that your doctor would tell you that you will never get off of prednisone. Is your doctor a rheumatologist? I was first diagnosed with polymyalgia rheumatica (PMR) in 2007 and placed on 20 mg prednisone dosage. It took me 3 years before I was able to taper off of prednisone with minimal pain. My PMR stayed in remission for 6 years before coming back in 2016. Again I started on 20 mg prednisone but was able to taper off in about a year and a half when my PMR went into remission again. I also have carpal tunnel syndrome in my hands but It doesn't cause me much pain so far.

I also have thin skin and bruise easily which I mostly attribute to my old age (75). I do have thin bones (osteoperosis) which I think is a side effect of the prednisone. Mayo Clinic has some information on thin skin here:
https://www.mayoclinic.org/healthy-lifestyle/healthy-aging/expert-answers/thin-skin/faq-20057753
You mentioned that your pain is mostly under control except you have some pain in your right arm and the doctor thought it was carpal tunnel syndrome. This site might help explain it and offer some possible insight.
https://orthoinfo.aaos.org/en/diseases–conditions/carpal-tunnel-syndrome/
Have you discussed trying to taper off prednisone with your doctor? That was the number one goal given to me by my rheumatologist even though he mentioned some people may never be able to completely taper off of prednisone.

John

Jump to this post

Good post, John. I do believe exercise helps a lot. For the last 2 days I took over 8,500 steps per day. I was thrilled ! However, to-day will be less, as I worked at Nature Center for 4 hours and was sitting for most of the time. To-morrow I plan to drop from 5mg to 4mg daily. Wish me luck. 🙂

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@peanuts1

Glad to find somebody to compare different problems with Polymialgia.I was diagnosed over four Years ago,it started as an uncomforable pain i tought came for the Fact i was on Vacation.Not my Mattress etc. I started on a high dose of predison and now i am at 2.5 twice a day. My Dr. tells me i will never get of Predison.Intersting reading different Symptoms.My Pain is somewhat under Controll but i have severe pain in my right Arm.This is the same Problem i had in the beginning but my Dr. tells me it is Carpel Tunnel Sindrom,I had a Cortison Shot by a different Dr but the Pain returned.
Also i also have a recuring Bladder Infection that nobody can explaine.I wonder also if anybody has thinning of the Skin,mostly the Arms.The slightes bump gives me a nasty bruise.Going near a Rosebush is out of the Question.As for the Question about Alcohol,i drink very little,seem to have lost my tast.Hope to hear more of your Ideas,always glad for the Information.Judy

Jump to this post

I have the same skin problem, and at first seemed to be bumping into everything I passed, which made it worse. Now I am more careful and balance is better, except when I become very tired. Sorry about the bladder infection. I just need to go more often than I used to. I've got in the habit of not ever passing up a bathroom, when I am out. Even if I din't particularly feel the urge.

REPLY
@peanuts1

Glad to find somebody to compare different problems with Polymialgia.I was diagnosed over four Years ago,it started as an uncomforable pain i tought came for the Fact i was on Vacation.Not my Mattress etc. I started on a high dose of predison and now i am at 2.5 twice a day. My Dr. tells me i will never get of Predison.Intersting reading different Symptoms.My Pain is somewhat under Controll but i have severe pain in my right Arm.This is the same Problem i had in the beginning but my Dr. tells me it is Carpel Tunnel Sindrom,I had a Cortison Shot by a different Dr but the Pain returned.
Also i also have a recuring Bladder Infection that nobody can explaine.I wonder also if anybody has thinning of the Skin,mostly the Arms.The slightes bump gives me a nasty bruise.Going near a Rosebush is out of the Question.As for the Question about Alcohol,i drink very little,seem to have lost my tast.Hope to hear more of your Ideas,always glad for the Information.Judy

Jump to this post

Thanks for sharing your story, Peanuts. My Doctor, like yours, told me that I would be on Prednisone the rest of my life. That was in 1999 and perhaps that was the prevailing theory then. I started tapering off Prednisone last summer and by early Feb, this year, was off it completely. Slowly and steadily though, my PMR symptoms returned… the stiffness in the AM, the inability to get into a crouch position, the impossibility to sit down without reaching for things to grab onto… many symptoms, as everyone here knows. So, last week I started on 5 mgs again. Most of my pain has diminished. Like you I also had pain in my right arm (not one of my usual symptoms of PMR) and believe that it could be Carpel Tunnel Syndrome. In the AM I cannot make a fist with my right hand either; is that the same for you? I also had very painful calves which I now believe is a separate issue… poor circulation. Thanks to @johnbishop who suggested I use Compression Stockings; that has been a huge help. It is such a great feeling to see progress. Carina

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@johnbishop

Hello @lindapc, welcome to Mayo Clinic Connect. Thank you for sharing your story. My first occurrence of PMR lasted 3 years. I was able to gradually taper my dosage down but the last 6 months I was going between 1 mg and 1/2 mg dosage of prednisone. I did have some pain when lowering the dosages but if it was tolerable I tried to stay on the lower dose. One of the things that helped me was to maintain some sort of mild exercise to keep the stiffness away or at least at a minimum. I too had a lot of weight gain with my first occurrence of PMR – about 50 to 60 pounds. It does require some lifestyle changes to keep from gaining extra weight.

Have you discussed the new sweating symptoms with your doctor? I did not have the sweating with my occurrences of PMR but it is one of the known symptoms.
https://www.nhsinform.scot/illnesses-and-conditions/muscle-bone-and-joints/conditions/polymyalgia-rheumatica

Jump to this post

Hello John, thank you for your reply and suggestions. I will be going to see my GP soon and will mention as you suggested. What I would also like to know is, how often should you have blood tests to see how the inflammation in your body is?

The Doctor warned me about the Giant Cell association with this condition and although I do not have eye problems or pain in my temple, I have had a very sore scalp since dropping my meds. Does anyone know if this is a symptom?

I also tried treatment with acupuncture and herbal tea which did help but ended up not able to carry on with this due to the costs, this may be something that works with others as well so just thought I would mention this. I try not to drink coffee with sugar but hot water with fresh ginger sliced into it (Ginger root promotes healthy digestion, helps boosts immunity (antioxidants that boosts immunity and helps fight off infections), aids in cardiovascular health and relieves pain (preventing prostaglandins from setting off an inflammatory response in the body.) Cinnamon also can assist with this.

Myself I dislike taking medication and try my best to heal with what nature has provided, although in this case I understand that there is a place for some medication. I also have hypothyroid which makes me quite tired and a fatty liver, so am concerned with taking the Prednisone as I would suspect that this would give your liver a bit of a trouble.

Although I know that exercise is important I find it very difficult to motivate myself at the moment to get out there and get walking. I work at a desk 2 days a week and have very little movement during that time, the rest of the week I have the good intentions but have got to the point where I do not want to go out as I feel so yuk about myself with the bloated face and the extra pounds…I dont want to have this poor me feeling but find it hard to pull myself out of the dark sometimes with this. Is depression part of the condition or a side effect of the Prednisone, I am normally a very positive person with a can do attitude but am floundering with this.

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I have only recently been diagnosed with PMR in December of 2018. I was diagnosed in 2011 at the age of 43 with RA. My bloodwork has always been normal. My initial symptoms in 2011 were intense soreness, stiffness and swelling in my hands, feet and fingers. I was placed on plaquenil and later methotrexate with good results. Of course there are good and bad days but I’m able to push through.
Fast forward to the fall of 2018. I walked like a 99 year old lady. So much shoulder pain, hip and low back pain. And forget trying to get out of the car after 15 minutes or more. So my Doc mentions PMR and prescribes pred. Within 48 hours I felt like a new person! The most frustrating part of all of this for me is the fatigue. But with the prednisone, for the first time in years I felt like myself. Unfortunately as the taper continues that changes also. I get a little stiffer and have a little more soreness with each decrease of Med, and increase in fatigue.
I have a pretty high pain tolerance and lead a fairly active life but I just wish I felt
better. Hopefully it will all come together and we can get all the cats herding in the same direction.

REPLY
@lindapc

Hello John, thank you for your reply and suggestions. I will be going to see my GP soon and will mention as you suggested. What I would also like to know is, how often should you have blood tests to see how the inflammation in your body is?

The Doctor warned me about the Giant Cell association with this condition and although I do not have eye problems or pain in my temple, I have had a very sore scalp since dropping my meds. Does anyone know if this is a symptom?

I also tried treatment with acupuncture and herbal tea which did help but ended up not able to carry on with this due to the costs, this may be something that works with others as well so just thought I would mention this. I try not to drink coffee with sugar but hot water with fresh ginger sliced into it (Ginger root promotes healthy digestion, helps boosts immunity (antioxidants that boosts immunity and helps fight off infections), aids in cardiovascular health and relieves pain (preventing prostaglandins from setting off an inflammatory response in the body.) Cinnamon also can assist with this.

Myself I dislike taking medication and try my best to heal with what nature has provided, although in this case I understand that there is a place for some medication. I also have hypothyroid which makes me quite tired and a fatty liver, so am concerned with taking the Prednisone as I would suspect that this would give your liver a bit of a trouble.

Although I know that exercise is important I find it very difficult to motivate myself at the moment to get out there and get walking. I work at a desk 2 days a week and have very little movement during that time, the rest of the week I have the good intentions but have got to the point where I do not want to go out as I feel so yuk about myself with the bloated face and the extra pounds…I dont want to have this poor me feeling but find it hard to pull myself out of the dark sometimes with this. Is depression part of the condition or a side effect of the Prednisone, I am normally a very positive person with a can do attitude but am floundering with this.

Jump to this post

Hi @lindapc, you ask a good question which I would probably ask your GP when you see them. Mayo Clinic has some information on the Sed rate (erythrocyte sedimentation rate) test here: https://www.mayoclinic.org/tests-procedures/sed-rate/about/pac-20384797. My primary care doctor normally schedules the test for me if he suspects my PMR might be coming back or to check to see where my treatment is at (I think).

I have been taking liquid turmeric (orange flavored ☺) to hopefully help reduce inflammation and I think it's helping. It's much better than the way I used to take it – organic turmeric powder mixed in a smoothie which made me not look forward to a breakfast smoothie. I recently started drinking ginger-turmeric tea recommended by another member @lioness which I get from Trader Joe's Market. It's not too bad and fairly inexpensive.

If you ever need some positive pick-me-up feelings, check out the videos on https://www.resilientoption.com/. The VLOG page has some great short videos.

REPLY
@dsteede

I have only recently been diagnosed with PMR in December of 2018. I was diagnosed in 2011 at the age of 43 with RA. My bloodwork has always been normal. My initial symptoms in 2011 were intense soreness, stiffness and swelling in my hands, feet and fingers. I was placed on plaquenil and later methotrexate with good results. Of course there are good and bad days but I’m able to push through.
Fast forward to the fall of 2018. I walked like a 99 year old lady. So much shoulder pain, hip and low back pain. And forget trying to get out of the car after 15 minutes or more. So my Doc mentions PMR and prescribes pred. Within 48 hours I felt like a new person! The most frustrating part of all of this for me is the fatigue. But with the prednisone, for the first time in years I felt like myself. Unfortunately as the taper continues that changes also. I get a little stiffer and have a little more soreness with each decrease of Med, and increase in fatigue.
I have a pretty high pain tolerance and lead a fairly active life but I just wish I felt
better. Hopefully it will all come together and we can get all the cats herding in the same direction.

Jump to this post

Hello @dsteede, welcome to Mayo Clinic Connect. Thank you for sharing your struggle with what I call the big hurt – polymyalgia rheumatica (PMR). You are so right about prednisone being the magic bullet for most of us. My PMR is currently in remission so I am happy for that. I think you may already being doing some of the things that really help with PMR – daily exercise and just plan movement and eating healthy. I've had 2 occurrences of PMR. The first was much like you described and the pain was gone within a few hours of taking prednisone. I also gained a ton of weight the first time around which took a long time to get off. I was more careful and changed my eating habits the second time around with PMR.

Slow and easy is the trick to tapering off of prednisone. My rheumatologist had me going back and forth between 1 mg and 1/2 mg the last six months of my first bout with PMR.

You have a lot of members here with experience on tapering off of prednisone. So we all welcome your questions.

REPLY
@johnbishop

Hi @lindapc, you ask a good question which I would probably ask your GP when you see them. Mayo Clinic has some information on the Sed rate (erythrocyte sedimentation rate) test here: https://www.mayoclinic.org/tests-procedures/sed-rate/about/pac-20384797. My primary care doctor normally schedules the test for me if he suspects my PMR might be coming back or to check to see where my treatment is at (I think).

I have been taking liquid turmeric (orange flavored ☺) to hopefully help reduce inflammation and I think it's helping. It's much better than the way I used to take it – organic turmeric powder mixed in a smoothie which made me not look forward to a breakfast smoothie. I recently started drinking ginger-turmeric tea recommended by another member @lioness which I get from Trader Joe's Market. It's not too bad and fairly inexpensive.

If you ever need some positive pick-me-up feelings, check out the videos on https://www.resilientoption.com/. The VLOG page has some great short videos.

Jump to this post

I think I have posted before, I take turmeric, ginger and other spices in my almond "milk" drink, with a little organic stevia to cut any bitter taste. I had one blood test to determine PMR and then another about 4 weeks later to see SED rate. My next one will not be until June, when I have my usual 4 months check up..

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