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?

Hi, Just discovered this group. I am starting my 3rd bout with PMR. The first bout came when I was 57. At that time, I couldn’t figure out what was happening and it was a bit frightening. I tried stretching, etc. When I saw my primary care MD, I had classic symptoms, high sed rate and was diagnosed and started on Pred that day. The rheumatologist thought I would be on the Pred for 6 weeks, but it took 2 years to get off it. I had immediate symptom relief. Then I went until age 70 when symptoms started up again. This time, I started Pred earlier and came off it in 10 months (last January). I think I weaned off too soon. This last bout started in November this year (2019) and I started Pred 3 weeks ago. My sed rate was at the top of normal and the CRP was elevated. The unusual thing this time was that I injured a knee in May gardening. I nursed it along with PT, elevation, icing, etc. it was pretty good, but reinjured in September. In October, I saw an ortho who took off 60 cc’s of fluid and gave me a cortisone shot. That night, I slept longer than I had in years and woke up pain-free. This was good for 3 weeks, then PMR symptoms developed quickly. (I wonder if I had some PMR treated with the cortisone, then rapid withdrawal helped bring out symptoms). The main side effect from prednisone was increased pressure in eye, so I became a glaucoma risk. I also was diagnosed with leukopenia at the same time as the PMR 12 years ago. This has persisted, but causes no problems. I am interested in how long folks are on Pred, how they taper, and any concurrent problems. I try to stay as active as possible, not hard with 4 grandkids. I have always taken the Pred at bedtime, it helps me sleep and I am a morning person,

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@virginiaj

Hi, Just discovered this group. I am starting my 3rd bout with PMR. The first bout came when I was 57. At that time, I couldn’t figure out what was happening and it was a bit frightening. I tried stretching, etc. When I saw my primary care MD, I had classic symptoms, high sed rate and was diagnosed and started on Pred that day. The rheumatologist thought I would be on the Pred for 6 weeks, but it took 2 years to get off it. I had immediate symptom relief. Then I went until age 70 when symptoms started up again. This time, I started Pred earlier and came off it in 10 months (last January). I think I weaned off too soon. This last bout started in November this year (2019) and I started Pred 3 weeks ago. My sed rate was at the top of normal and the CRP was elevated. The unusual thing this time was that I injured a knee in May gardening. I nursed it along with PT, elevation, icing, etc. it was pretty good, but reinjured in September. In October, I saw an ortho who took off 60 cc’s of fluid and gave me a cortisone shot. That night, I slept longer than I had in years and woke up pain-free. This was good for 3 weeks, then PMR symptoms developed quickly. (I wonder if I had some PMR treated with the cortisone, then rapid withdrawal helped bring out symptoms). The main side effect from prednisone was increased pressure in eye, so I became a glaucoma risk. I also was diagnosed with leukopenia at the same time as the PMR 12 years ago. This has persisted, but causes no problems. I am interested in how long folks are on Pred, how they taper, and any concurrent problems. I try to stay as active as possible, not hard with 4 grandkids. I have always taken the Pred at bedtime, it helps me sleep and I am a morning person,

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Hi @virginiaj, welcome to Mayo Clinic Connect. Your story is similar to mine except I had fluid removed from my right knee at the same time my first occurrence of PMR occurred. It took me 3 years to taper off off prednisone. The last six months or so I was going back and forth between 1 mg and 1/2 mg dose until I was finally able to be off of prednisone. The PMR came back 6 years later and it took me about 1-1/2 years to taper off of prednisone which was almost 2 years ago. I think the tapering went easier the second time around because I wasn't afraid to try different dosages. I think each of us are different. My rheumatologist was very helpful in giving me suggestions on tapering. I started at 20 mg for both occurrences and was able to get the prednisone in 5 mg, 2-1/2 mg and 1 mg tabs. I used a monthly taper the first time around with PMR until the last six months then I switched to weekly. If the pain was too bad when I tapered, I went back to a lower dosage than the previous dosage for 2 days to see if I could still get by with a lower dose than the previous one. The second occurrence of PMR I used a weekly taper after the first couple of months and it worked for me.

I've always taken the prednisone in the morning when I get up and I'm also a morning person. If it helps to take it at night, I think that's a great plan. Sleep is definitely what the body needs to recover. The only side effect I had with the prednisone was the weight gain. I gained around 60+ lbs the first time around with PMR. The second time I was conscious of the weight gain and was able to keep it between 5 and 10 lbs. I had my right knee replaced last April and had a cortisone shot the year before. I don't think it had any impact on my PMR which is still in remission

I did make a few lifestyle changes to help with the PMR – better eating habits and diet, more exercise as I was more sedentary the past 5 years or so. Have you made any lifestyle changes or had any side effects with the prednisone?

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@johnbishop

Hi @virginiaj, welcome to Mayo Clinic Connect. Your story is similar to mine except I had fluid removed from my right knee at the same time my first occurrence of PMR occurred. It took me 3 years to taper off off prednisone. The last six months or so I was going back and forth between 1 mg and 1/2 mg dose until I was finally able to be off of prednisone. The PMR came back 6 years later and it took me about 1-1/2 years to taper off of prednisone which was almost 2 years ago. I think the tapering went easier the second time around because I wasn't afraid to try different dosages. I think each of us are different. My rheumatologist was very helpful in giving me suggestions on tapering. I started at 20 mg for both occurrences and was able to get the prednisone in 5 mg, 2-1/2 mg and 1 mg tabs. I used a monthly taper the first time around with PMR until the last six months then I switched to weekly. If the pain was too bad when I tapered, I went back to a lower dosage than the previous dosage for 2 days to see if I could still get by with a lower dose than the previous one. The second occurrence of PMR I used a weekly taper after the first couple of months and it worked for me.

I've always taken the prednisone in the morning when I get up and I'm also a morning person. If it helps to take it at night, I think that's a great plan. Sleep is definitely what the body needs to recover. The only side effect I had with the prednisone was the weight gain. I gained around 60+ lbs the first time around with PMR. The second time I was conscious of the weight gain and was able to keep it between 5 and 10 lbs. I had my right knee replaced last April and had a cortisone shot the year before. I don't think it had any impact on my PMR which is still in remission

I did make a few lifestyle changes to help with the PMR – better eating habits and diet, more exercise as I was more sedentary the past 5 years or so. Have you made any lifestyle changes or had any side effects with the prednisone?

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Thanks for the information. With my first bout at age 57, I was able to continue with my regular exercise program, which consisted of walking 3 miles with a friend 2 times a week, going to an aerobics class 3 times a week, occasional Zumba or fun walks. The rheumatologist cautioned me to not use weights over a pound due to risk of tendinitis. I did get tendinitis in my right arm/shoulder, etc twice due to carrying heavy things, treated with rest, PT and acupuncture. I also got elevated pressures in my eyes from the prednisone, which made me a glaucoma risk. The pressures went down after I was off prednisone. I also have leukopenia, low white cells and saw a hematologist. He did a bone marrow showing that I am making enough white cells , but some are destroyed. He felt this was linked to the PMR, but the rheumatologist didn’t think so. This has persisted, but causes no problems, my primary just does a lab twice a year to see if it stabile. About 5 years ago, my husband and I retired and moved from Wisconsin to Minneapolis to be closer to kids and grandkids. I was fortunate in that my primary care MD moved as well, so I was able to continue with her. When the PMR returned 2 years ago, I didn’t see a rheumatologist, just continued with her. Now that I have a third bout, she prescribed the Pred for me, but wants me to see a rheumatologist again, which I will at the end of January. Hopefully, it will be one who listens to me. I can’t do the amount of exercise at 72 (73 next month) that I could at 57, but I do go to a senior exercise class 2 times a week and do some walking. Of course, I am also trying to avoid reinjuring the knee. I monitor my weight (I worked as a RND) and have been able to prevent gain. I think this is because my Pred dose is fairly low and I take it at night so am hungry at breakfast (a good time to be hungry) rather than mid-afternoon (not a good time to have the munchies). I am thinking of Tai Chi. I have thought of water exercise, but the Y’s, etc are quite expensive for monthly membership. I eat healthy, use oils that tend to be anti-inflammatory, but don’t follow a strict anti-inflammatory diet.

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@ethanmcconkey

Hi @johnbishop @jules11 @marilyncarkner @becsbuddy @igolf @kp5450121 @dreamer38 @jimma @beryl @kdmorris @alanbruce @lindapc @rolandhp @kdmorris @kirby @susieflamilngo @beckie @noosat1 @ambershe @sharync @amom7 @rachelp @grammlyn @sallygosse @sidsell1 @dar9216 @pringsmuth @barry51 @anniegal @gll104 @noahs @sammiesarah @digregorioj @redhen @lioness @michelecallahan @suziropiequet @dixiebell @tinkerbell @rogernj67

I’d like to invite you to the new group dedicated to discussions about Polymyalgia Rheumatica.

It’s a space where to ask questions, share tips and learn about managing PMR with each other. Please drop a note to say hi and introduce yourself. What's your experience with PMR? How are you doing today?

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Ethan, Thank You for starting this PMR group. I also found @johnbishop experiences with PMR very helpful. I am new to PMR diagnosis. now on day 10 or so of prednisone. I have seen a 40-50 % reduction in symptoms at 10mg/day dosage, MD advised to increase to 15mg/day. I had a recent spinal fusion (8 weeks ago) ,so at low end of prednisone dosing . I have found PMR to be the great imitator of many ailments. My CRP went to 29, ESR unavailable , several weeks prior to diagnosis, however my symptoms of shoulder pain, arm pain, muscle pain,low back pain all had occurred months to 2 years prior to diagnosis. I had chest pain/thoracic pain that sent me to the ER and Urgent Care. Doctor after Doctor tried there best to come up with a diagnosis. PMR is a great imitator of so many other more common illnesses. I am still puzzled why the symptoms occur worse at night/early morning or in recumbent position. I have read many of the experiences here at Mayo Connect on Polymyalgia Rheumatica. Thank You all for educating me .

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@phoenix0509

Ethan, Thank You for starting this PMR group. I also found @johnbishop experiences with PMR very helpful. I am new to PMR diagnosis. now on day 10 or so of prednisone. I have seen a 40-50 % reduction in symptoms at 10mg/day dosage, MD advised to increase to 15mg/day. I had a recent spinal fusion (8 weeks ago) ,so at low end of prednisone dosing . I have found PMR to be the great imitator of many ailments. My CRP went to 29, ESR unavailable , several weeks prior to diagnosis, however my symptoms of shoulder pain, arm pain, muscle pain,low back pain all had occurred months to 2 years prior to diagnosis. I had chest pain/thoracic pain that sent me to the ER and Urgent Care. Doctor after Doctor tried there best to come up with a diagnosis. PMR is a great imitator of so many other more common illnesses. I am still puzzled why the symptoms occur worse at night/early morning or in recumbent position. I have read many of the experiences here at Mayo Connect on Polymyalgia Rheumatica. Thank You all for educating me .

Jump to this post

Hello @phoenix0509, I see this is your first post and would like to thank you for sharing your PMR experience and welcome you to Mayo Clinic Connect. It really is a great place to learn together by sharing your experiences and learning from the experience of other members. My PMR seemed to be worse in the morning both times when it was active. Then once I was awake and able to move a little that seemed to help (along with the prednisone ☺) with the pain. Most of my pain from PMR was also in the shoulders, arms, hands and the lower back. The key for me was starting at 20 mg dose which took care of almost all the pain and then start tapering off as I was able to do with a minimum amount of pain. Each of us are different and I think that's a big struggle learning how much pain you can deal with when tapering off of prednisone.

Are you able to ask your doctor about splitting your dosage between morning and evening, or maybe adding the 5 mg dosage increase he suggested in the evening? I think that some members have mentioned it helped them to split the dosage. I started both my occurrences of PMR at 20 mg which I think is a fairly common starting point.

Liked by phoenix0509

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@phoenix0509

Ethan, Thank You for starting this PMR group. I also found @johnbishop experiences with PMR very helpful. I am new to PMR diagnosis. now on day 10 or so of prednisone. I have seen a 40-50 % reduction in symptoms at 10mg/day dosage, MD advised to increase to 15mg/day. I had a recent spinal fusion (8 weeks ago) ,so at low end of prednisone dosing . I have found PMR to be the great imitator of many ailments. My CRP went to 29, ESR unavailable , several weeks prior to diagnosis, however my symptoms of shoulder pain, arm pain, muscle pain,low back pain all had occurred months to 2 years prior to diagnosis. I had chest pain/thoracic pain that sent me to the ER and Urgent Care. Doctor after Doctor tried there best to come up with a diagnosis. PMR is a great imitator of so many other more common illnesses. I am still puzzled why the symptoms occur worse at night/early morning or in recumbent position. I have read many of the experiences here at Mayo Connect on Polymyalgia Rheumatica. Thank You all for educating me .

Jump to this post

Hi, Welcome. PMR is a strange disease. I had my first bout 15 years ago, then was fine for 12 years. I had a recurrence 2 years ago, then a 3rd recurrence starting this December. The first time I was on prednisone 2 years, the 2nd time 10 months. I do wonder if I came off the prednisone too fast the second time and if this 3rd bout is because of that. I do take my prednisone at about 8:00 at night because it helps me sleep without the stiffness at night and, as a morning person, I am more active then. I do get symptomatic starting about 6 at night and into the evening. I have seen people split there dose and wonder about trying that. As far as the stiffness, I found a great description in the Mayo education piece. It described a “gelling” phenomenon, where your muscles get stiff when sitting, standing or laying, then loosen up as you move. I definitely notice that. My first rheumatologist recommended doing lots of range of motion exercise, but not weights. I have stayed with that advice. I try to read everything I can find, but have never found a cause or way to prevent recurrence. I am now 72 (almost 73). My CRP this time was 20 (normal 8-20).
Best wishes.

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@virginiaj

Hi, Welcome. PMR is a strange disease. I had my first bout 15 years ago, then was fine for 12 years. I had a recurrence 2 years ago, then a 3rd recurrence starting this December. The first time I was on prednisone 2 years, the 2nd time 10 months. I do wonder if I came off the prednisone too fast the second time and if this 3rd bout is because of that. I do take my prednisone at about 8:00 at night because it helps me sleep without the stiffness at night and, as a morning person, I am more active then. I do get symptomatic starting about 6 at night and into the evening. I have seen people split there dose and wonder about trying that. As far as the stiffness, I found a great description in the Mayo education piece. It described a “gelling” phenomenon, where your muscles get stiff when sitting, standing or laying, then loosen up as you move. I definitely notice that. My first rheumatologist recommended doing lots of range of motion exercise, but not weights. I have stayed with that advice. I try to read everything I can find, but have never found a cause or way to prevent recurrence. I am now 72 (almost 73). My CRP this time was 20 (normal 8-20).
Best wishes.

Jump to this post

Virginia J ; Nice of you to reply. PMR is constellation of symptoms that are baffling at times. I am curious when your 3 episodes of PMR occurred in the calendar year. I noticed the 3rd episode occurred this past December 2019. Do you recall in what month episode 1 and 2 started , or was diagnosed? Thanks David W.

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@johnbishop

Hello @phoenix0509, I see this is your first post and would like to thank you for sharing your PMR experience and welcome you to Mayo Clinic Connect. It really is a great place to learn together by sharing your experiences and learning from the experience of other members. My PMR seemed to be worse in the morning both times when it was active. Then once I was awake and able to move a little that seemed to help (along with the prednisone ☺) with the pain. Most of my pain from PMR was also in the shoulders, arms, hands and the lower back. The key for me was starting at 20 mg dose which took care of almost all the pain and then start tapering off as I was able to do with a minimum amount of pain. Each of us are different and I think that's a big struggle learning how much pain you can deal with when tapering off of prednisone.

Are you able to ask your doctor about splitting your dosage between morning and evening, or maybe adding the 5 mg dosage increase he suggested in the evening? I think that some members have mentioned it helped them to split the dosage. I started both my occurrences of PMR at 20 mg which I think is a fairly common starting point.

Jump to this post

John, @johnbishop, thank you for serving as a mentor to polymyalgia Rheumatica group (PMR). I will speak with my doctor about splitting my prednisone dosage to 10mg in am, and 5mg in pm. as a means to lessen the nighttime and/or early morning symptoms.
I also have SFPN (small fiber peripheral neuropathy) ,idiopathic in origin. My rosacea is also flaring every couple weeks this past month or so.
How many of the PMR group also have co-existing auto-immune type conditions? John, are you able to broadcast this question?
Thank You. curious @phoenix0509 ,David W.

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@phoenix0509

John, @johnbishop, thank you for serving as a mentor to polymyalgia Rheumatica group (PMR). I will speak with my doctor about splitting my prednisone dosage to 10mg in am, and 5mg in pm. as a means to lessen the nighttime and/or early morning symptoms.
I also have SFPN (small fiber peripheral neuropathy) ,idiopathic in origin. My rosacea is also flaring every couple weeks this past month or so.
How many of the PMR group also have co-existing auto-immune type conditions? John, are you able to broadcast this question?
Thank You. curious @phoenix0509 ,David W.

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Hi David @phoenix0509, I also have idiopathic small fiber PN. I shared my neuropathy story in another discussion here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Not really able to do a broadcast message but I will post a question in the same discussion where I shared my story above and link to your post above.

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@phoenix0509

Virginia J ; Nice of you to reply. PMR is constellation of symptoms that are baffling at times. I am curious when your 3 episodes of PMR occurred in the calendar year. I noticed the 3rd episode occurred this past December 2019. Do you recall in what month episode 1 and 2 started , or was diagnosed? Thanks David W.

Jump to this post

My first bout started in September, diagnosed in late October. When symptoms started, I didn’t know what was wrong, tried stretching, different exercise until I finally went to physician. I had a really high sed rate, classic symptoms, was diagnosed by my primary care physician and saw rheumatologist the same day. The second time 12 years later, symptoms started in November, diagnosed in February. That time I had symptoms, but CRP was only high normal. This time symptoms started in November, diagnosed in December. I have had the same primary care physician for all 3 and we have an excellent relationship. She wants me to see a rheumatologist again and I will see one at the end of January, but not sure if I will learn anything new. I pretty much have been free to titrate my dose down, just sending her a message every 2 weeks as to where I am and when I need more prednisone. I also have neutropenia and have had that since my first bout 15 years ago. I saw a hematologist at the time, it has been unchanged for 15 years, so now my primary just tests it every 6 months. It causes no problems.

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Hi,

I was just recently diagnosed with PMR. I am currently on 15mg of prednisone down from 20mg.
Most of my pain is in my legs and hips. I am excited that I found a group that I can talk to and gain knowledge from.

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@mbm

Hi,

I was just recently diagnosed with PMR. I am currently on 15mg of prednisone down from 20mg.
Most of my pain is in my legs and hips. I am excited that I found a group that I can talk to and gain knowledge from.

Jump to this post

Hello @mbm, welcome to Mayo Clinic Connect. I also have PMR but it is currently in remission. You mentioned being at 15mg down from 20mg. Did your rheumatologist suggest a tapering schedule? Are you pain free at 15mg?

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@virginiaj

My first bout started in September, diagnosed in late October. When symptoms started, I didn’t know what was wrong, tried stretching, different exercise until I finally went to physician. I had a really high sed rate, classic symptoms, was diagnosed by my primary care physician and saw rheumatologist the same day. The second time 12 years later, symptoms started in November, diagnosed in February. That time I had symptoms, but CRP was only high normal. This time symptoms started in November, diagnosed in December. I have had the same primary care physician for all 3 and we have an excellent relationship. She wants me to see a rheumatologist again and I will see one at the end of January, but not sure if I will learn anything new. I pretty much have been free to titrate my dose down, just sending her a message every 2 weeks as to where I am and when I need more prednisone. I also have neutropenia and have had that since my first bout 15 years ago. I saw a hematologist at the time, it has been unchanged for 15 years, so now my primary just tests it every 6 months. It causes no problems.

Jump to this post

@virginiaj thank you for explaining what time of year your 3 bouts of PMR occurred , I find it interesting that all 3 bouts of PMR started in the fall of the year. September,November and November. Also interesting is that my first case of PMR became acute in December 2019. Diagnosed finally after clinical symptoms and high CRP (29). I did have a Flu vaccine and Prevnar Vaccine together in October (2019).
@virginiaj– did you get the flu vaccine or any vaccine each fall prior to the start of each occurrence of PMR?

Thanks, David

Liked by ltta

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@phoenix0509

@virginiaj thank you for explaining what time of year your 3 bouts of PMR occurred , I find it interesting that all 3 bouts of PMR started in the fall of the year. September,November and November. Also interesting is that my first case of PMR became acute in December 2019. Diagnosed finally after clinical symptoms and high CRP (29). I did have a Flu vaccine and Prevnar Vaccine together in October (2019).
@virginiaj– did you get the flu vaccine or any vaccine each fall prior to the start of each occurrence of PMR?

Thanks, David

Jump to this post

I worked in health care, so always got the flu vaccine, plus any others recommended. I don’t think it has any relation to onset of PMR. My first bout started the day after I did a 5k run/walk as fast as I could and was really stiff the next day. I thought it was from the exercise, but it never went away. I have tried to figure out causes and/or prevention, but have not found anything. For now, I just have learned to deal with it when it’s active and try to have healthy eating/exercise behaviors whether it’s active or not.

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@virginiaj

Hi, Welcome. PMR is a strange disease. I had my first bout 15 years ago, then was fine for 12 years. I had a recurrence 2 years ago, then a 3rd recurrence starting this December. The first time I was on prednisone 2 years, the 2nd time 10 months. I do wonder if I came off the prednisone too fast the second time and if this 3rd bout is because of that. I do take my prednisone at about 8:00 at night because it helps me sleep without the stiffness at night and, as a morning person, I am more active then. I do get symptomatic starting about 6 at night and into the evening. I have seen people split there dose and wonder about trying that. As far as the stiffness, I found a great description in the Mayo education piece. It described a “gelling” phenomenon, where your muscles get stiff when sitting, standing or laying, then loosen up as you move. I definitely notice that. My first rheumatologist recommended doing lots of range of motion exercise, but not weights. I have stayed with that advice. I try to read everything I can find, but have never found a cause or way to prevent recurrence. I am now 72 (almost 73). My CRP this time was 20 (normal 8-20).
Best wishes.

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I reread and saw my error. Normal CRP is 0-8

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