1. < Polymyalgia Rheumatica (PMR)
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I think I have PMR and I’m terrified

Posted by martyn @martyn, 1 day ago

I’m new on here because I guess I’m desperately seeking some comfort. I’m 58, active, keen cyclist doing 100 miles a week and live tennis. Then , five weeks ago I started the excruciating arm and shoulder pains. Did not even know what PMR was then and still didn’t really think I had PMR even when a friend told me to read up about it. I just thought it was some nerve issue.. anyway, long story short, went to rheumatologist today and he said 90% it’s PMR and will do the steroid test over next 4 days to get a confirmed diagnosis.
I’ve spent all night reading about this horrible condition and I’m filled with dread and a little despair. I have been very touched by reading some of the testimonies on this forum and I guess I’m just looking for some positive thoughts as I set out on this PMR journey that until a few weeks ago I never even imagined. I feel so stuck because I know the morning pain (which eases by afternoon but never goes away) is totally debilitating but I’m also very concerned about the side effects of the corticosteroids. Has anyone tried to battle it without taking the drugs? And if I have to take the steroids how bad are the side effects? I feel in a very dark place and feel as though I’ve suddenly gone from being a fit and young at heart 50 something to old age in a heartbeat :..
I’m sure once this settles in I’ll get to grips with it as I’ve managed some pretty tough times with a back surgery that went wrong but this feels so unknown and sinister. Apologies for being on the side of melodramatic but any positivity anyone whom is dealing with PMR can send my way would be very welcome… take care of yourselves
Martyn

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

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martyn | @martyn | 7 hours ago
In reply to @pmrnew "@martyn Yep, same here. Was petrified (dec 2025), always active, healthy diet. I was scared of..." + (show)
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@martyn Yep, same here. Was petrified (dec 2025), always active, healthy diet. I was scared of Prednisone, refused for 2.5 months (Jan-March 2026 in USA no insurance) and finally accepted pred when I could not walk up the stairs. This from a Canadian doc who's sister has exactly the same thing, PMR 2 weeks after Corona booster. My pain was completely gone 1-2 hours after 1st pred dose of 30MG. During the 2.5 months of pain but no drugs I juiced, fasted, completely stopped drinking and ate mostly vegetables. I DID gain 10LB on pred but had lost 30, so that was OK. I am crying now about the hair loss. Once started on pred mid March, tapered somewhat quickly, 5MG each week. At 2.5MG now tapering from 7 days a week, each week 1 day less. Lots of pain but manageable and it it is less later in the day. This forum opened my eyes to all the very different experiences people have at the different levels of Prednisone and biologicals. And like @tweetypie13 mentioned keep a diary. We are all a bit delusional (well, I am;-) and I forgot the pain. It does seem from what everyone says living healthy is important. Good luck on your journey.

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@pmrnew thanks for your reply...Funnily enough I caved after about an hour of looking at the packet of Pred this morning and then just took 15mg, not the 20mg the rheumtologist told me. I thought I need to find out for sure that I have PMR and then discuss with him next week the plan. Im interetsed that you got on a low dose quickly. Agreed, it's really eye-opening to read all the different experiences om here and reassuring at the same time. I like the diary idea, just to keep a log and also write any good tips. Stay safe , M

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martyn | @martyn | 7 hours ago
In reply to @dave923 "Martyn, welcome to the PMR club (if that indeed is what you have; you will get..." + (show)
Profile picture for dave923 @dave923

Martyn, welcome to the PMR club (if that indeed is what you have; you will get the answer soon after starting your prednisone, either within hours or a few days). This is a club nobody wants to be a part of! I was exactly in your boat 3.5 months ago (I'm 10 years older than you), lifelong athlete, cyclist, "perfect " health, petrified by this mysterious disorder I'd never heard of and even more scared of the steroid treatment side effects. You will likely go through several stages like: why me? how did this happen? feeling like an old man, incapacitated; denial, acceptance, learning to live with aches and pain, etc. There are Facebook groups touting a prednisone-free PMR journey but I imagine there are relatively few who could tolerate for 1-2+ years the debilitating, excruciating pain that characterizes PMR. Slowly you will get used to prednisone. If you are one of the fortunate souls it could be measured in months (I'm still hoping for this) of taking the drug or years. The good news is that I can still cycle especially in the afternoon/evening almost pain-free (100 km/60 miles, relatively flat) in one session or 50 km/30 miles with 1000 m elevation gain). But everyone is different and you will have to figure out what you can tolerate. I've noticed very little "additional " pain after these rides. What I miss most is being able to do is certain upper body weight training sessions. Keep us posted on your early prednisone results and best of luck moving forward!

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@dave923 YThank you @dave923 ....i was thinking could i just 'tough this out' and put up with pain but i think that will just open a can of worms and be thoroughly miserable. I dont know if you had this but this morning (this is before i started taking any Pred) i felt about 50% better than the previous morning so in my silly head I start to imagine that maybe it's goign to magically disappear! did you notice pain levels vary before you started the medication journey? I'm down to take 20mg for the next 5 days and then have my follow-up with specialist. I will have to confess to him that I'm only taking 15mg! I'm now going out for a short ride. Bizarrely lasty week i was in Mallorca where my wife is from and I love riding there and even with barekly being able to use my arms I could still ride in the heat and it actually seemed to help as when i returned later I was looser. So I'm going to try and keep rolling as much as possible but maybe leave my return to Mont Ventoux until next year when hopefully I'll be on the right path to getting over this ! All the best

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2 replies
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Mike | @dadcue | 7 hours ago
In reply to @dave923 "Martyn, welcome to the PMR club (if that indeed is what you have; you will get..." + (show)
Profile picture for dave923 @dave923

Martyn, welcome to the PMR club (if that indeed is what you have; you will get the answer soon after starting your prednisone, either within hours or a few days). This is a club nobody wants to be a part of! I was exactly in your boat 3.5 months ago (I'm 10 years older than you), lifelong athlete, cyclist, "perfect " health, petrified by this mysterious disorder I'd never heard of and even more scared of the steroid treatment side effects. You will likely go through several stages like: why me? how did this happen? feeling like an old man, incapacitated; denial, acceptance, learning to live with aches and pain, etc. There are Facebook groups touting a prednisone-free PMR journey but I imagine there are relatively few who could tolerate for 1-2+ years the debilitating, excruciating pain that characterizes PMR. Slowly you will get used to prednisone. If you are one of the fortunate souls it could be measured in months (I'm still hoping for this) of taking the drug or years. The good news is that I can still cycle especially in the afternoon/evening almost pain-free (100 km/60 miles, relatively flat) in one session or 50 km/30 miles with 1000 m elevation gain). But everyone is different and you will have to figure out what you can tolerate. I've noticed very little "additional " pain after these rides. What I miss most is being able to do is certain upper body weight training sessions. Keep us posted on your early prednisone results and best of luck moving forward!

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@dave923

I thought I could still ride my bicycle when taking Prednisone after PMR was diagnosed. It was not the smartest thing I ever did. I hit the proverbial wall after 30 miles or so. I had to stop and lie down in a ditch with critters crawling all over me. I checked my pulse thinking I might die at any moment and my pulse was irregular. Fortunately my brother was with me and he doubled back to find me. He thought there was something wrong with me because I couldn't keep up with him. Usually it was the other way around.

I'm not sure how I got home but I called my primary care doctor about an irregular pulse and the sheer exhaustion. He wanted me to do an EKG which detected the cardiac arrhythmia and left ventricular hypertrophy (LVH) which was attributed to my prednisone dose and "possibly high blood pressure." My blood pressure was discovered to be in excess of 210/110 in an emergency room a few days later. I found myself suddenly being started on 3 blood pressure medications by a cardiologist when my blood pressure was never any problem before this.

Definitely monitor your blood pressure when on prednisone. Some exercise that doesn't require too much endurance might be better than a long distance bicycle ride. I have learned to find pleasure from aquacise with the older ladies in my class with almost no men.. At least the ladies seem to think I'm still very fit because of how I jump into the swimming pool. I also can swim some laps without too much of a problem since getting off of prednisone now that PMR is under control.

I have ridden my bicycle a few times since stopping Prednisone. All three blood pressure medications have also been discontinued since Prednisone was stopped.

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jeff97 | @jeff97 | 5 hours ago
In reply to @martyn "@dave923 YThank you @dave923 ....i was thinking could i just 'tough this out' and put up..." + (show)
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@dave923 YThank you @dave923 ....i was thinking could i just 'tough this out' and put up with pain but i think that will just open a can of worms and be thoroughly miserable. I dont know if you had this but this morning (this is before i started taking any Pred) i felt about 50% better than the previous morning so in my silly head I start to imagine that maybe it's goign to magically disappear! did you notice pain levels vary before you started the medication journey? I'm down to take 20mg for the next 5 days and then have my follow-up with specialist. I will have to confess to him that I'm only taking 15mg! I'm now going out for a short ride. Bizarrely lasty week i was in Mallorca where my wife is from and I love riding there and even with barekly being able to use my arms I could still ride in the heat and it actually seemed to help as when i returned later I was looser. So I'm going to try and keep rolling as much as possible but maybe leave my return to Mont Ventoux until next year when hopefully I'll be on the right path to getting over this ! All the best

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@martyn Something I found from my time on prednisone was that it significantly lowered my maximum heart rate. I kept running through most of my time on prednisone, but I would have to walk most uphills, and also take frequent walk breaks to let my heart rate come down. It took almost 6 months of being off of prednisone before I could really make hard efforts again.

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dave923 | @dave923 | 3 hours ago
In reply to @martyn "@dave923 YThank you @dave923 ....i was thinking could i just 'tough this out' and put up..." + (show)
Profile picture for martyn @martyn

@dave923 YThank you @dave923 ....i was thinking could i just 'tough this out' and put up with pain but i think that will just open a can of worms and be thoroughly miserable. I dont know if you had this but this morning (this is before i started taking any Pred) i felt about 50% better than the previous morning so in my silly head I start to imagine that maybe it's goign to magically disappear! did you notice pain levels vary before you started the medication journey? I'm down to take 20mg for the next 5 days and then have my follow-up with specialist. I will have to confess to him that I'm only taking 15mg! I'm now going out for a short ride. Bizarrely lasty week i was in Mallorca where my wife is from and I love riding there and even with barekly being able to use my arms I could still ride in the heat and it actually seemed to help as when i returned later I was looser. So I'm going to try and keep rolling as much as possible but maybe leave my return to Mont Ventoux until next year when hopefully I'll be on the right path to getting over this ! All the best

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@martyn
yes, the symptoms fluctuate/vary in intensity every day before on prednisone and after starting prednisone but regardless things are worst in the morning. You will learn this quite quickly. It's all right to "disobey" somewhat the instructions from your doc. I started on 12.5 mg. My doc said yesterday it's not an exact science; the amount you start with and how you taper off the drug and you have to work together as a team, as well as experiment. As mentioned all the time on this forum, every PMR patient plots a different course and everyone is impatient and wants to get off prednisone as quickly as possible. But it's important to be patient. I tried 2 quick tapers already and learned a lot both times what I can handle and what I can't manage. Now I've got a third strategy set up with my doc yesterday. I just came back from a 40 mile 1400 m elevation gain cycling ride up Mt Seymour in Vancouver, my hometown. I haven't had any heart issues like @dadcue or max HR issues like @jeff97 in working out. I'm heading on a cycling trip to south of France in 3 weeks. I am definitely scared of the unknown territory being on prednisone and trying to taper down with 9 hour jetlag! Normally, I rest a day or 2 before going back at cycling but I'll have to do 7 days straight there. Hopefully, disaster won't strike! Let us know if 15 mg has helped resolve your pain/stiffness/discomfort

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cwbf | @cwbf | 2 hours ago
In reply to @dadcue "@cwbf Thanks for the suggestion. I would have consented to something minimally invasive. My original spine..." + (show)
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@cwbf

Thanks for the suggestion. I would have consented to something minimally invasive. My original spine surgeon said surgery would be "extensive" and my entire lumbar spine would need to be fused. There was so much "bad bone" that should be removed that the surgeon was worried that there wouldn't be enough "good bone" left to hold all the hardware needed to fuse my spine. The surgeon was very worried that I was on prednisone and decided I wasn't a good candidate for major spine surgery.

I had so much radiating leg pain at the time that I would have settled for a leg amputation. I took a big dose of prednisone because I could not stand the pain any longer. The pain stopped after I took the large dose of prednisone. It was a very traumatic experience for me that happened about 10 years ago. I still remember my rheumatologist looking up from my MRI scan and saying she was happy the pain stopped but she wouldn't have recommended so much prednisone. She didn't elaborate on what she would have done.

The whole ordeal was revisited a few years later. I wasn't in as much pain but a surgeon said a less extensive surgery could be done to relieve some pain. She said some nerves were being "crushed" so paralysis was a possibility. I have some nerve damage but my gait was still "functional" according to that spine surgeon. That spine surgeon left surgery pending for whenever I'm ready.

I'm going with what another neurosurgeon told me. He was the surgeon who did my microvascular decompression (MVD) surgery for trigeminal neuralgia. He said "let pain be the deciding factor" for doing the lumbar fusion. I don't have too much back pain currently as long as I stay on a biologic called Actemra (tocilizumab). My back problem is one reason why my rheumatologist doesn't want to discontinue Actemra and says it is better than taking prednisone for the rest of my life.

The other problem was a complication I had after my knees were replaced . I had an aberrant healing process called heterotopic ossification (HO) after my knees were replaced. HO is called bone formation in soft tissues where bone isn't supposed to exist. This was called a healing process gone awry likely caused by too much inflammation.

That orthopedic surgeon told me never to have any surgery ever again.
https://pmc.ncbi.nlm.nih.gov/articles/PMC6715128/

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@dadcue Whew. That's a lot and very complicated. Not sure "MILD" would be helpful but you might inquire--a surprising number of doctors dont seem to be aware or consider it. Hang in there.

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