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.

I’m Ethan, and I’m the moderator of this group. You’ll most likely be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Volunteer Mentors on Connect.

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?

@lisalucier

@steelbh – I have moved your post here to this discussion @johnbishop recommended so that you can also get to know other members who have talked about polymyalgia rheumatica, like @rolandhp @gregp1 @jules11 @lumberjill @calicojoy.

I have been on prednisone before for stretches for my asthma, and I don't care for being on it. It's hard to sleep, and my husband does not prefer my personality on that med. 🙂 Others here may have some thoughts from their previous tapers off of prednisone. I always just followed a taper plan written on my pill bottle.

Is your doctor aware that you don't want to be taking the prednisone anymore? If so, has your doctor suggested a schedule for the taper?

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Having been on Prednisone for a year now, I too am trying to get off of it. I’m down from 80 mg. to 12.5 mg. per day. Got a laugh out of your husbands not caring for your personality while on it. My wife feels the same about me some days. On the steroid insomnia, I used to struggle with getting up in the middle of the night looking for things to do. Since I started taking melatonin 3 mg. a night, I have no problems sleeping. Being diabetic (brought on by the steroid), I have to get up several times at night, but I always go right back to sleep. I haven’t experienced any after effects of the melatonin, as with prescription sleep aids. No sluggishness the next day. Just a good nights sleep every night. Hope this helps some.

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@ltta

Hello steelbh… I am so sorry that you have PMR…. I believe most people with PMR symptoms do go away in just a few years. There is lots of helpful information on this site about tapering very, very slowly. Read everything you can! Be your own advocate!

I was first diagnosed at age 44 with PMR… I've been dealing with it for 18 years. So yes, some people it lasts a good portion of their lifetime. The last flu vaccine I received in 2014 set it off again and I have felt it in my body ever since then.

I usually taper to 1 to 2 mg and stay there… which is fine with me to be able to live a full life with just a little pain. I'm very active ride Mountain Bikes, hike, chase grand kids!

Last September I got a virus in my chest, terrible cough that lasted almost 2 months. It set off the PMR again. Doc put me on a very quick prednisone taper 7mg to 0 in 6 weeks! I don't think he believed me when I said PMR had returned.

Once I came off the drug the pain came right back. I went in for labs last Thursday… blood works show inflammation on the rise, but SED rate is not over the "high" line. CRP is high, but not extremely yet. I know my body and if left unchecked without prednisone the inflammation will keep going up. So I am now waiting to see if the Rheumatologist will agree and prescribe Prednisone again, or if I have to suffer for a few more weeks to get higher inflammation markers. What a racket! So depressing… Quality of life is awful when dealing with this condition and having to prove you are in pain. 🙁

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Wow! that is a long time to have this beast of a disease. I’m trying to taper off of 20mg, tried to go to 17.5 and pain was awful. So went back to 20 and now trying 19 mg. Seems like a long haul. How will i ever get below 10 mg??? My strength is so low… can’t hardly lift 20 lbs dumbbells when use to do 50-55…😐

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@johnbishop

Thanks for starting a PMR Group Ethan @ethanmcconkey! I hope other members with PMR will share their experience and share any tips they have.

I've had 2 occurrences of PMR. The first time it took me a little over 3 years to taper off of prednisone. The second occurence 6 years later, it took me 1-1/2 years to taper off of prednisone. I lived with a minor amount of aches and pains at each taper point but kept going unless the pain was really bad. It might help to keep a tapering off log and write down the dosage and the pain level so that you have something to compare with each time you drop the dosage. I started tapering by 1/2 mg when it got difficult and that seemed to help me.

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John i believe u had posted that u used liquid turmeric? I can't find that post you had… how many mg/day of turmeric. I have really tried to change my diet towards a keto sort, to alleviate inflammatory foods such as sugars, carbs.. i'm not following a keto to the T, but I would say 90%… When I try and work out it hurts to lift any weights whatsoever, should I not lift if it hurts? or do you work through the pain, or will it damage where the inflammation is even worse? I also try and do some stretching and yoga and bike riding but not working out affects me mentally as it always has… sorry for all the questions but I would love to hear your wisdom and knowledge and appreciate this group.

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@steelbh

John i believe u had posted that u used liquid turmeric? I can't find that post you had… how many mg/day of turmeric. I have really tried to change my diet towards a keto sort, to alleviate inflammatory foods such as sugars, carbs.. i'm not following a keto to the T, but I would say 90%… When I try and work out it hurts to lift any weights whatsoever, should I not lift if it hurts? or do you work through the pain, or will it damage where the inflammation is even worse? I also try and do some stretching and yoga and bike riding but not working out affects me mentally as it always has… sorry for all the questions but I would love to hear your wisdom and knowledge and appreciate this group.

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@steelbh I take 1 tbsp daily of Qunol Liquid Turmeric – https://www.amazon.com/Turmeric-Curcumin-Qunol-Bioperine-Supplement/dp/B079T64N8K/ref=sr_1_1_sspa – the serving size is 15 ML (1 tbsp) and contains 1000 mg of Curcumin Turmeric and also contains Black Pepper Extract and a few other things. Sometimes I mix it with a glass of water to take with my other supplements. It mixes well with water, juice, coffee or most things and doesn't taste bad. Before I used the liquid turmeric I was using Qunol's Turmeric instant drink mix which also contains ginger — https://www.amazon.com/Qunol-Turmeric-Absorption-Anti-Inflammatory-Supplement/dp/B07QF8RGXH/ref=sr_1_1_sspa

I do use 10 lb hand weights to help with my arms and shoulders but not as much as I should. Most of my exercise is using my elliptical which also helps with my arms and shoulders but is more weight bearing and like walking which is what I personally need. I'm no expert and have no medical training but I try and take a queue from my body. If I'm doing something and it starts hurting, I stop doing it. It might be something to discuss with your doctor. Last April I had a knee replacement and there were days I didn't want to do the rehab exercises but I did push myself some because the therapist showed me what I needed to do as part of the recovery and I tried to keep on schedule with it. I think the key is not to over do it but I think that is really dependent on the individual. You are definitely ahead of me if you are doing yoga and stretching exercises. I know that would help me but I just haven't made the time to do it….yet 🙂

I just started using intermittent fasting a few weeks ago and so far I am amazed at how much it's helping me with my weight struggle. Since you are following the keto diet somewhat, you may be interested in following a health journey blog by @LeeAasehttps://social-media-university-global.org/my-health-journey/
Lot's of good information on diet and exercise.

Keep up the good work with the diet and the exercise, and just take it one day at time!

Liked by Lee Aase, steelbh

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@steelbh

John i believe u had posted that u used liquid turmeric? I can't find that post you had… how many mg/day of turmeric. I have really tried to change my diet towards a keto sort, to alleviate inflammatory foods such as sugars, carbs.. i'm not following a keto to the T, but I would say 90%… When I try and work out it hurts to lift any weights whatsoever, should I not lift if it hurts? or do you work through the pain, or will it damage where the inflammation is even worse? I also try and do some stretching and yoga and bike riding but not working out affects me mentally as it always has… sorry for all the questions but I would love to hear your wisdom and knowledge and appreciate this group.

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When I first had this 16 years ago, my rheumatologist told me to avoid heavy weights, but to do a lot of range of motion exercise. Now on my 2nd or 3rd bout, I continue to follow that advice, He felt there was a risk of tendinitis with heavy weights. (I did get tendinitis from carrying heavy things!). My current rheumatologist also encourages range of motion exercises and also encourages daily exercise rather than a lot at one time. I always feel better on days that I exercise. Now that Sidewalks are clear of ice, I will try to walk daily.

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@steelbh

I appreciate the encouragement, i will look into the turmeric liquid. I tried the pill for for 2 mo and didn’t feel a difference. Did u take methotrexate also? R u still on it? Any certain foods u stay away from? When u work out do you do it even when there is pain in those certain muscles? I’m afraid when i feel the pain when even lifting light weights I’m just inflaming the area that has inflammation. Or do u just keep working out thru the pain? Sorry for all the questions, but like to here some wisdom and experience. Thanks again.

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Sorry it took so long for me to answer your post worked all day yesterday. To answer your question no I do not have any special diet but I am gluten sensitive so I do try to stay away from foods or beverage that contain gluten. I do not take methotrexate. Now along with exercise I found that if you stay busy during the day it keeps your mind off of your pain or discomfort try it & in the evening you will wonder you got through the day without the discomfort. I also never experienced any muscles pain. Now as I had said it is now mostly in my finger & wrist joints. At the gym it is hard to do any bench presses as it is compressing the wrist joint so I do pull downs & no pain associated with that work. Try it.

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@steelbh

Wow! that is a long time to have this beast of a disease. I’m trying to taper off of 20mg, tried to go to 17.5 and pain was awful. So went back to 20 and now trying 19 mg. Seems like a long haul. How will i ever get below 10 mg??? My strength is so low… can’t hardly lift 20 lbs dumbbells when use to do 50-55…😐

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That is typical with PMR yes you loose your strength I use to bench press 120 lbs & when I came down with PMP it was hard to do 40 lbs now I am back up to 80 lbs don't despair it will get better. Like I had said in my previous post try pull downs.

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@johnbishop

@steelbh I take 1 tbsp daily of Qunol Liquid Turmeric – https://www.amazon.com/Turmeric-Curcumin-Qunol-Bioperine-Supplement/dp/B079T64N8K/ref=sr_1_1_sspa – the serving size is 15 ML (1 tbsp) and contains 1000 mg of Curcumin Turmeric and also contains Black Pepper Extract and a few other things. Sometimes I mix it with a glass of water to take with my other supplements. It mixes well with water, juice, coffee or most things and doesn't taste bad. Before I used the liquid turmeric I was using Qunol's Turmeric instant drink mix which also contains ginger — https://www.amazon.com/Qunol-Turmeric-Absorption-Anti-Inflammatory-Supplement/dp/B07QF8RGXH/ref=sr_1_1_sspa

I do use 10 lb hand weights to help with my arms and shoulders but not as much as I should. Most of my exercise is using my elliptical which also helps with my arms and shoulders but is more weight bearing and like walking which is what I personally need. I'm no expert and have no medical training but I try and take a queue from my body. If I'm doing something and it starts hurting, I stop doing it. It might be something to discuss with your doctor. Last April I had a knee replacement and there were days I didn't want to do the rehab exercises but I did push myself some because the therapist showed me what I needed to do as part of the recovery and I tried to keep on schedule with it. I think the key is not to over do it but I think that is really dependent on the individual. You are definitely ahead of me if you are doing yoga and stretching exercises. I know that would help me but I just haven't made the time to do it….yet 🙂

I just started using intermittent fasting a few weeks ago and so far I am amazed at how much it's helping me with my weight struggle. Since you are following the keto diet somewhat, you may be interested in following a health journey blog by @LeeAasehttps://social-media-university-global.org/my-health-journey/
Lot's of good information on diet and exercise.

Keep up the good work with the diet and the exercise, and just take it one day at time!

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Yes John I started on Qunol liquid Turmeric 1000mg/day 2 weeks ago & it does help

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I wanted to let you know about a new COVID-19 group that has been created to help you stay informed with different related discussions to help us get through this difficult time so that we can help each other. If you don't see the discussion topic you and have a question, please create a new discussion under the new COVID-19 group.

https://connect.mayoclinic.org/group/covid-19/

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Hi: I'm Chris and was just diagnosed with PMR (a week ago) and am now on 10 mg. Prednisone. Let me go back to the beginning…
In December of 2018 I was diagnosed with breast cancer. I went through the procedures of chemo, surgery and radiation, and by December of 2019 got the all clear. I did develop neuropathy from the chemo and am still living with that, but it seems a lesser problem than the PMR. In late January I had my 5 year colonoscopy and was diagnosed with diverticulitis and was put on a 7 day regiment of Cipro and flagyl (sp). Two days after taking Cipro I felt like I had been hit by a truck. It took 2-1/2 months to come up with a diagnosis of PMR. The symptoms have certainly eased, especially being able to get out of bed in the morning, but I still have slight shoulder pain and total fatigue. My question is how long does this fatigue last? Should it not have gone away when I started on the Prednisone? I try to exercise a little but tire so easily. Oh yes I am a 77 year old female who has been healthy and active all my life up until now. Your input would be appreciated.

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@ncgal

Hi: I'm Chris and was just diagnosed with PMR (a week ago) and am now on 10 mg. Prednisone. Let me go back to the beginning…
In December of 2018 I was diagnosed with breast cancer. I went through the procedures of chemo, surgery and radiation, and by December of 2019 got the all clear. I did develop neuropathy from the chemo and am still living with that, but it seems a lesser problem than the PMR. In late January I had my 5 year colonoscopy and was diagnosed with diverticulitis and was put on a 7 day regiment of Cipro and flagyl (sp). Two days after taking Cipro I felt like I had been hit by a truck. It took 2-1/2 months to come up with a diagnosis of PMR. The symptoms have certainly eased, especially being able to get out of bed in the morning, but I still have slight shoulder pain and total fatigue. My question is how long does this fatigue last? Should it not have gone away when I started on the Prednisone? I try to exercise a little but tire so easily. Oh yes I am a 77 year old female who has been healthy and active all my life up until now. Your input would be appreciated.

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Hello Chris @ncgal, Welcome to Mayo Clinic Connect. You certainly have had a lot on your plate and adding PMR to that is a double whammy. My PMR is currently in remission but I have had two occurrences and was started on 20 mg prednisone both times and it was the magic pill – pretty much all my pain went away until I started tapering off of prednisone (which you want to do when the pain/inflammation is controlled). The first time it took me almost 3 years to taper off with the last few months going back and forth between 1 mg and 1/2 mg until I was finally able to stop taking it with minimum aches and pain. The second time around came 6 years later and took me 1-1/2 years to taper off with similar tapering. You are right about the first time feeling like you were hit by a truck.

Since you have only recently been diagnosed with PMR and just started prednisone, it might be worth calling your rheumatologist or doctor to see if the dosage should be adjusted upward if your pain is too much. Fatigue can be a problem.
Another thing that did help me was a lifestyle change with my eating habits. I still have my days but try to avoid certain foods and the big one sugar. You might find these articles helpful.

What to eat if you have polymyalgia rheumatica: https://www.medicalnewstoday.com/articles/321683

3 Strategies for Coping with Polymyalgia Rheumatica (PMR):
https://www.arthritis-health.com/blog/3-strategies-coping-polymyalgia-rheumatica-pmr

Peripheral Neuropathy Nutrition: https://www.foundationforpn.org/living-well/lifestyle/nutrition/

Chris are you able to sleep well?

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@johnbishop

Hello Chris @ncgal, Welcome to Mayo Clinic Connect. You certainly have had a lot on your plate and adding PMR to that is a double whammy. My PMR is currently in remission but I have had two occurrences and was started on 20 mg prednisone both times and it was the magic pill – pretty much all my pain went away until I started tapering off of prednisone (which you want to do when the pain/inflammation is controlled). The first time it took me almost 3 years to taper off with the last few months going back and forth between 1 mg and 1/2 mg until I was finally able to stop taking it with minimum aches and pain. The second time around came 6 years later and took me 1-1/2 years to taper off with similar tapering. You are right about the first time feeling like you were hit by a truck.

Since you have only recently been diagnosed with PMR and just started prednisone, it might be worth calling your rheumatologist or doctor to see if the dosage should be adjusted upward if your pain is too much. Fatigue can be a problem.
Another thing that did help me was a lifestyle change with my eating habits. I still have my days but try to avoid certain foods and the big one sugar. You might find these articles helpful.

What to eat if you have polymyalgia rheumatica: https://www.medicalnewstoday.com/articles/321683

3 Strategies for Coping with Polymyalgia Rheumatica (PMR):
https://www.arthritis-health.com/blog/3-strategies-coping-polymyalgia-rheumatica-pmr

Peripheral Neuropathy Nutrition: https://www.foundationforpn.org/living-well/lifestyle/nutrition/

Chris are you able to sleep well?

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John, thanks for your reply. My goodness, you certainly have been at this a long time. I'm glad you are doing better now.

I have never had a problem sleeping, thank goodness. Only difference is that I now sleep totally on my back as I can't roll over or sleep on my side due to the shoulder and knee pain. The rheumatologist will do a virtual telephone appointment with me after I have been on the Prednisone for two weeks. He suggested that at that time if my pain had diminished he would wean me off it. From all I am hearing and reading that sounds a little premature.

I know I must start eating the correct foods but I still have a lack of appetite and am still losing weight. I have lost a total of 60 lbs since my cancer diagnosis. I have looked at the web sites you posted, thank you. I will stock up on the "good" foods as soon as I feel confident enough to send my adult son to the store for me. Don't want him coming down with the virus at least for these next two apex weeks.

Stay safe.

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@ncgal

Hi: I'm Chris and was just diagnosed with PMR (a week ago) and am now on 10 mg. Prednisone. Let me go back to the beginning…
In December of 2018 I was diagnosed with breast cancer. I went through the procedures of chemo, surgery and radiation, and by December of 2019 got the all clear. I did develop neuropathy from the chemo and am still living with that, but it seems a lesser problem than the PMR. In late January I had my 5 year colonoscopy and was diagnosed with diverticulitis and was put on a 7 day regiment of Cipro and flagyl (sp). Two days after taking Cipro I felt like I had been hit by a truck. It took 2-1/2 months to come up with a diagnosis of PMR. The symptoms have certainly eased, especially being able to get out of bed in the morning, but I still have slight shoulder pain and total fatigue. My question is how long does this fatigue last? Should it not have gone away when I started on the Prednisone? I try to exercise a little but tire so easily. Oh yes I am a 77 year old female who has been healthy and active all my life up until now. Your input would be appreciated.

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Hi Chris, sorry to hear of your difficulties. I am similar age to yourself and also had rapid, overnight actually, onset of PMR. I am wondering if shock plays a part in this. Your colonosopy and the medication in your case, and in my case spending a couple of days with my ex husband and finding he had extreme paranoia all of a sudden living in fear of intruders, etc. Plays with your mind for sure. Anyhow I rapidly got onto prednisone at 15 mg a day and 16 months later got myself down to 2 and a half but in view of this pandemic cutting down to one one day, one and a half the next, for sake of immune system. Just holding the stiffness at bay. You ask about fatigue. Its a funny thing, comes and goes. Mine is more just sometimes my eyes shut and I drift off in company, or wherever. Kids just put it down to old age lol.It will last a day, then ok for a week perhaps. Its stayed the same from before diagnosis til now on very small amount of prednisone. Take Care in these difficult times.

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@heretaunga1947

Hi Chris, sorry to hear of your difficulties. I am similar age to yourself and also had rapid, overnight actually, onset of PMR. I am wondering if shock plays a part in this. Your colonosopy and the medication in your case, and in my case spending a couple of days with my ex husband and finding he had extreme paranoia all of a sudden living in fear of intruders, etc. Plays with your mind for sure. Anyhow I rapidly got onto prednisone at 15 mg a day and 16 months later got myself down to 2 and a half but in view of this pandemic cutting down to one one day, one and a half the next, for sake of immune system. Just holding the stiffness at bay. You ask about fatigue. Its a funny thing, comes and goes. Mine is more just sometimes my eyes shut and I drift off in company, or wherever. Kids just put it down to old age lol.It will last a day, then ok for a week perhaps. Its stayed the same from before diagnosis til now on very small amount of prednisone. Take Care in these difficult times.

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Thanks for the reply heretaunga1947. I think you might be right about the shock to the system. My doctors did think that the Cipro I was given for the diverticulitis was a springboard for the PMR, but who knows for sure. It took 3 months for me to get a diagnosis, although for part of that time I just thought it was old age and the remnants of my breast cancer treatments. I've only been on 10 mg Prednisone for 8 days now, so am fairly new to this. It has helped a lot, but still have a small amount of pain in my shoulders, but it's bearable. I 'm still trying to get my head around the fact that this is a long term deal. Sorry about your ex. I can kind of relate as my husband has PTSD from being in Vietnam.

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@ncgal

Thanks for the reply heretaunga1947. I think you might be right about the shock to the system. My doctors did think that the Cipro I was given for the diverticulitis was a springboard for the PMR, but who knows for sure. It took 3 months for me to get a diagnosis, although for part of that time I just thought it was old age and the remnants of my breast cancer treatments. I've only been on 10 mg Prednisone for 8 days now, so am fairly new to this. It has helped a lot, but still have a small amount of pain in my shoulders, but it's bearable. I 'm still trying to get my head around the fact that this is a long term deal. Sorry about your ex. I can kind of relate as my husband has PTSD from being in Vietnam.

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Hi ncg. 10 mg a day seems relatively low for a starting point from what I have read of other people's experiences.Glad it has helped a lot. I started on 15 mg which took away all symptoms and I could get out of bed, as you mentioned. My g.p. has more or less left it to me to get down to a level of stiffness that I find bearable. Now with this pandemic thing a lot of people are trying even harder to cut right back, but who knows how much the prednisonel affects our immune systems. Perhaps if we generally don't get many colds etc. its not all that vital. I also got some information at the start that we should have a supply of prednisone in case we have a flare up, which I suppose that means symptoms worsening. Also I was getting new glasses at the time and the optometrist pointed out to be wary of head aches because in some cases in develops after PMR and can lead to blindness so to take it very seriously. Sorry can't remember the name…arterial something. I am sorry it has been difficult for you and your husband after his service in Vietnam. I have a vivid memory of waiting to return home from Sydney airport in the lounge, after a holiday in Australia, and seeing a huge column of young men, not in uniform but clearly American soldiers, marching in two by two and out on the tarmac. The line went on for several minutes. They must have been returning to the war zone after r. and r. and there was something so sad watching them. Looking ahead but very subdued. I had never seen anything as close up as that and never did again. Anyhow hope you have a peaceful Easter, and the PMR behaves itself.

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