Warning – This is a bit long and you may find it boring!
I wanted to share my recent experiences as someone who has only recently begun the PMR experience. I am a 55 year old man who shouldn’t get Polymyalgia….right??
When my pain began late in 2022 I had no idea what it might be and put off going to the GP because I feared sounding like a 55-year old male whinge-bag with an increasing list of aching joints. Reading this forum and learning about my symptoms has helped me massively in getting through the early stages of this illness and will continue to inform and support me as I move forwards in the next few years. I hope that anyone else in the early stages and feeling as hideous as I did might see this and gain heart from the fact that there is light at the end of the tunnel and despite my own preconceptions to the contrary- there are still good doctors out there.
• Symptoms began with hip/upper leg pain approx. Sept 22 (I put this down to walking which I had dramatically increased after a minor heart issue in May 22)
• Pain/stiffness appeared in right shoulder approx. Nov 22, hips/upper legs worsened
• Right shoulder pain worsened hugely in Dec 22. Hip and leg pain increased pain which meant getting out of bed or up from a chair was very difficult and painful. Work becoming a strain as getting in and out of a large van hurt
• Around 20 Dec – right shoulder so painful in bed sleep was impossible, turning over in bed – agony. Keeping the house awake with my nightly performances (screaming/swearing in pain)
• 23/12 – Prescribed Naproxen for pain – didn’t help at all
• 25 Dec, tried using 2 bottles of wine in desperation to sleep. Fell asleep at 11pm but slept on bad shoulder and woke at 1.30am in intense pain and deep regret – never again! Don’t do this.
• 28 Dec - Sent home from work (van driver) as couldn’t lift or load van. Pain immense by now
• 29 Dec – previously taken blood test for PMR (23/12) came back clear. Gutted not to have some form of diagnosis and meaningful treatment plan.
• 30 Dec – contacted Nurse practitioner in despair at pain. They ordered X-rays (to rule out arthritis) and prescribed amitriptyline and Co-Codamol (30/500) along with the naproxen– none of these touched the pain at any stage. Pain horrendous and somehow seems to be in wrists and bottom of thumbs
• 5 Jan 23 – in complete despair contacted GP and insisted on talking to a GP.
GP called me back same day and was superb. Listened carefully, asked lots of questions and concluded PMR almost certain and we’ll trial Pred at 15Mg Pred for a week then review. I immediately cut carbs from diet in desperation to avoid possible weight gain.
• After 2 nights of Pred, a distinct improvement in pain level in hips and left shoulder but right shoulder still terrible
• After 3 nights of Pred, improvements continue except right shoulder
• After 4 nights of Pred improvements continue except right shoulder
• After 5 nights of Pred – hips and legs almost normal, left shoulder approx. 70% improved. Right shoulder very minor improvement
• After 6 nights of Pred – Right shoulder starting to ease (woo hoo!). Pain easing by approx. 20%. Other areas OK
• After 7 nights of Pred – Right shoulder continues to improve. Hips only sore after walking around a mile or so, otherwise OK.
• 12 Jan - Had telephone review with same GP. 20 minute conversation in which he was excellent. Very thorough in listening to my progress, questions and concerns. Concluded that PMR is correct diagnosis due to the success of Pred treatment and failure of all other meds. Agreed another 2 weeks at 15mg then review with a view to beginning a gentle taper around 4 weeks although no decision until nearer the time. Signed off work another 2 weeks
• 13 Jan (today). In normal, low level movements, right shoulder is almost normal. Raising arms/lifting still painful but it’s early and the improvements are amazing (probably 60-70% improved in the last 4 days alone). No longer shouting and screaming at night. Hips, legs, wrists/ thumbs all seem almost normal.
What’s above might seem a bit self-indulgent and boring but it is a very recent and ongoing experience which might give heart to anyone newly diagnosed or suffering. If you can get diagnosed and started on the right medication the results can be as quick as you might read – often within the first week. I feel so much better already and although I expect some turbulence along the way, am well armed with information to take this condition on.
I can’t begin to thank the folk on this group enough for their fantastic help, support and warmth. Reading the information on here and seeing the answers to my newbie questions undoubtedly helped me make my case to the GP who listened and treated me seriously. Further it has helped me to explain a complicated and little known condition to family, friends and work colleagues.
I have tried to keep this as brief as I could but happy to fill in any blanks if I can be of service to anyone else.
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Bigbaldgit67
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I am trying to document day by day throughout this in the hope I can keep the GP on my side and inform others who might get reassurance from my experiences. My own diary has far more detail but is more than any sane reader could bear. The diary started later than I’d have like as I only became aware of PMR in Dec, until then I thought that my symptoms were just mad middle-aged malingerings.
‘My own diary has far more detail but is more than any sane reader could bear.”
Know exactly where you are coming from ….mine was similar, although I did have a head start, I had been monitoring late hubby’s health for some time before my issues started.… so I have a lot of info pre and post diagnosis.
Please keep it going, because it’s surprising how much you forget over time….
wish I had started a diary! My PMR began with losing weight without trying to the extent that I saw my GP. She ran all kinds of tests. All things seemed normal. My weight loss stopped and then after about a year I thought I had whiplash due to the pain and stiffness in my neck. Tried pt. Didn’t help. Then it progressed to where my range of motion and severe pain was from my neck to knees. It was excruciating. Diagnosed with PMR as my ESR of 82. After first dose of 15 mg pred I felt like my old self again. After these past few years I am now down to 3 mg one day /4 the next. My ESR is now 8. I am achy in morning but that goes away with movement. Glad to have found this group
Glad you eventually found relief. The “official”sources” of information seem to make light of the pain, describing merely a “stiffness” which certainly in our cases, doesn’t do justice to the phenomenal pain that can exist is some sufferers.
I have also had weight loss (well over 1 stone) in around a month. It seems to still be a falling after 9 days on Pred but I didn’t mention it in the above post as I’m not confident it will stay off - hopeful though!
Just keep your eye on the “achy in the morning” …and make sure it doesn’t increase. It may just be normal after a night’s sleep body not on the move, but with PMR one needs to be aware but not paranoid about such things.
Another point, when tapering [more so at lower doses] you may find it easier to reduce by 0.5mg and a slower plan rather than an alternative day regime you are doing - and many Rheumies seem to advise. It might not sound much but a change of 1mg from day to day from 4mg to 3mg is a 25% decrease - and that’s a lot for the body to cope with….from 3 to 2mg it will be a 33% difference…even bigger, and maybe more problematic.
Provided you have plain white uncoated tablets they can be cut in half quite easily. ..
And links to a couple of slower plans should you wish to go that route -
Thank you again DL, you have been a fantastic help throughout.
I’m trying to keep my unexpected optimism under control as I know I’m likely to get bitten on the ar*e at some point and have this smug grin wiped off my clean off my horrible old face.
Although I have never met the GP that has thus far served me so well over the phone only, I am hoping to stay under his care as he sounds like someone who will take a cautious and sensible approach to tapering. I can see that’s my next major hurdle and that it will take patience from me and GP to get it right.
So long as you have a sensible doctor who is willing to discuss rather than dictate the way forward then that’s half the battle… The other half is you being realistic about what you can and cannot do on a daily basis….and not being carried away by the joy in not being in pain. Easy to do early days.
Many people on here do manage to continue working successfully, with minor adjustments, and have to say that men [in general, but not always] do seem to fare better.
As we all know, life can bite you on the bum at the best of times, you just have to be aware that it may be more likely to happen with PMR.
But as often said on here, it’s usually only temporary [although it may not seem like it at times] - and there are a lot worse things in life to cope with…
Positive outlook - and as I said before a sense of humour -goes a long way to get you through.
Ha I know exactly what you mean. I was so determined to taper down with rhuemies advice 1 mg every two weeks only to bitten in the A--s at 8 mg. Went back to 14 mg for a week then 12 now back to 10 where I plan to stay for a month. I was confident that my healthy body would bounce back only to be taught that it is a slow slow process. Learning to live with the ride. Good luck to you, it sounds like you are on the right track.
I would also like to work with others to develop a list of descriptors for the various levels/ kinds of pain, and also fatigue we w PMR experience. In US, the use of a 10-point scale for pain has helped doctors and nurses in hospitals be more responsive. Anyone interested in working on such a list?
The pain scales are in use in the rheumy departments I have anything to do with. I was a subject in a study in the summer about pain perception - there are problems with correlation between pain experienced and how they assess disease activity. Part of it is because what we think of as pain differs from their understanding.
I've written about pain on a number of occasions. Depending on your training, biology, mental approach and descriptive ability to verbalise your experience it will be different for each of us. I know that I can tolerate a higher level of pain than the average person experiences so my level of tolerable acceptability my be anothers unacceptable pain. Cyclists and athletes train to operate consistently at a level of tolerable pain without exceeding their ability to sustain optimum performance at the same time. It is threshold pain through not exceeding that level. They are trained/conditioned to become almost inured. Sadly, this is why it took years to finally recognise what was wrong with me. I don't think there is any way a standard chart of pain recognition therefore can be reliable. Too much subjectivity and variability.
I too use the 1-10 scale, but that’s still subjective as everyones’ max pain threshold is different. In my case I have a relatively high threshold based on my neurosurgeon’s evaluation awhile ago. So a 7/10 for me might be a 10/10 for someone else.
Yes - even doctors in the ED recognise that in patients! If a farmer or an elderly patient, especially in Yorkshire, says it is a 5, most people would be shouting and screaming ...
Same here only I had to self diagnose with Polymyalgia Rhuematic to my Consultant (thanks to the advice of the good and learned folks here) he thought I had PMR. there are very very few forums for my condition, so because the treatment is statins and symptoms very similar I hang around here. Thank you all so much
My journey was quite similar. I started my diary fairly recently, my v savvy 27 Yr old daughter suggested I keep a daily journal as she said I might make some major decisions when I was struggling with fatigue etc . V wise words
Morning BBG, not going to go into when started etc as it's all in my profile, but I've kept a spreadsheet diary pretty much from when I started, as well as notes about how I feel its a complete record of all medication taken, left in stock and planned to take. I send this to my docs, usually when putting in a Pred request and they love it. I can also add that they have been totally supportive and there for me from day 1 and right through the pandemic. No problem with appointments if/when needed. No pressure to decrease and occasionally they give me a curtesy call to make sure things are OK. I've never followed the alternative day routine but have a slightly modified DL taper and work on a 0.5mg decrease every five weeks. However, although this is the plan it's not written in stone to be followed at all cost, if I need to stay on a dose longer I will do so then start the next taper when I feel ready.
2.5 years in I've had a relatively easy time with few problems, those that did appear were jointly sorted with doc and me, and even fewer, if any, side effects, but I'm still not rushing and probably around twelve months to go if nothing goes topsy turvy. If it does it does and I'll cope with it at the time.
It confirms what Dorsetlady often says in that there are worse things out there and PMR, even if can’t be entirely beaten, can be taken on and given a bloody nose!
Nice to hear about helpful GPs too as they do get some stick (deservedly so in some cases).
In my case got the stiff neck, stiff unable to lift arms and painful legs night sweats and weight loss. But pain other than the first day or so was relatively mild and although ached could still walk but couldn't bend. Came on after the first covid jab so took 3 months to even see a Dr....by which time mostly just stiffness. I now know I was very lucky with those levels if discomfort! Good luck and keep well
Interesting to read your post about your initial reaction to pred.
I kept a similar record in the first three weeks after diagnosis, and what happened with me was that the initial 20 mg dose proved insufficient to clear all the inflammation. Thus I was upped to 30 mg for a short while.
What happened was that I was still in pain in the morning, got some relief in the middle of the day, but pain returned in the evening. PMRpro then told me that for some of us, pred doesn’t last the full 24 hours, and it’s effect can be from 12 to 24 hours depending on the individual patient. For me, it was closer to 12 hours.
After a short while(3 weeks) the 30 mg worked, and I was able to taper down to 25, then to 20, then to 17,5, then to 15 at two weekly intervals. I took to taking the pred about 2am as advised. After 15 mg, I slowed my taper appreciably, and never reduced if I felt any symptoms at all, but never stayed less than four weeks at any level - frequently more!
I realise that you work, but pmr does demand loads of tlc and most definitely patience!!! It gets better when it wants to regardless of what anyone else may say.
My experience was that I had no pain as long as I didn't move. On waking in the morning I felt comfortable but as soon as I tried to move my legs the pain was excruciating in my knees, back and hips. I had to put my hands under my legs and inch them up to bend my knees (luckily I had no shoulder issues). Then came the difficult bit of twisting round and sitting up. Once sitting on the edge of the bed, the next challenge was getting dressed. The stiffness was so great I felt like the lower half of my body was turning to stone. It did improve once I got moving about, but never really let off. Showering in the evening was very difficult. My GP was surprised at this, as she said she would expect any PMR pain to clear by midday. Yes it was worse in the morning, but definitely not back to normal later in the day. After a while the stiffness spread to my neck and jaw. 15mg pred saw me back to normal within 24 hours. I slept so well!! And pain free! My pred was upped to 40mg as a mild headache hadn't quite gone away, and I was told I had GCA despite a negative biopsy.
Luckily the real experts do now understand that PMR pain and stiffness is NOT just a morning thing - it lasts all day! We had to tell them often enough mind!
that’s great! Looking back, I started with this at age 50. I’ve just been diagnosed at age 52 but spent 7 months bedbound due to “being too young” To have PMR. I can’t tolerate the steroids so I’m in a really mess. I suspect I have a frozen shoulder too. Good luck to you.
Understand the "being to young" quandary in delaying care. One Rheumy diagnosed me at 49yo and placed me on prednisone. I moved across country, got a new Rheumy and they stated I don't have PMR because I am to young. Now, I sit two weeks away from age 50 taking NSAIDS with minimal relief awaiting to see my 3rd Rheumy. My symptoms and labs are classic PMR all triggered from stress "job burn out" and the COVID vaccine. To young, sigh.... I get it.
yes, it seems to be quite a common problem and really quite ridiculous.
thank you for posting I was diagnosed in November 22 and it’s been bit of rollercoaster. Painkillers don’t work and I’ve had to increase steroids agin due to increasing inflammatory markers. Getting frustrated with lack of improvement and totally bored with myself as feel I’m turning into a whinging old woman at 69 years young and struggling to still keep working. I changed virtually overnight from a previously hugely active 100 miles an hour person who thought she was still 45 😆 into some kind of tortoise. I find I have to laugh and joke about it as the best way to deal with it. My job is fairly physical but must be much harder for you. My own thoughts are this was due to last covid vaccine in September. And if I think back have had milder episodes over past two years. But obviously no medical evidence to support this
I have wondered myself if there might be a link with the Covid vaccine. I didn’t notice straight away as my symptoms “developed” and almost snuck up on me but you are not the first person to suggest this 🤔.
There is no single cause for PMR/GCA. It is considered to be an accumulation of insults to the immune system throughout life and eventually one is the straw that breaks the camels back, the immune system goes haywire, is unable to recognise your body as self and attacks it as foreign. Those insults include illness, trauma, environmental or chemical factors, substances which includes drugs, emotional and physical stress. Other vaccines have been blamed - especially flu and shingles. But it could as well have been the illness they are designed to protect you from. But equally - while people swear it was this vaccine or that vaccine that did it, many of us can say they had never had one - like many others, I'd had no flu or shingles jabs and it was many years before the Covid jab. No two people have the same history - and the history also requires some genetic input that creates a predilection for the situation to develop. Ig it hadn't been the vaccine - it would have been another potential trigger that came along.
I tend to discount the vaccine reaction. Having worked in immunology research for 8 years (ok, back in the ‘70s) other than modified live virus vaccines I have a difficult time seeing the causation, except if a reaction (accumulative or otherwise) is to the adjuvant. If not having a reaction (delayed?) to the adjuvant the reaction should be specific for a set of viral proteins whether to a whole killed virus or specific viral proteins.
I also have a hard time thinking coding for cells to produce a specific viral protein fragment would cause an issue either. The immune response should include destroying those cells producing those proteins. But I’m far from being a conspiracy theorist who sees boogie men everywhere. What sad way to live.
Anyway, I do think repeated exposure to various chemicals could and do have an impact. Since I started my exposure with doing stupid things with chemicals like leaded gasoline, and a variety of solvents (both halogenated and non-halogenated) without wearing gloves or respirator while working on cars and the like, I’m surprised I haven’t experienced something far worse than PMR. It’s like avoiding contracting a virus, it’s common sense, identify paths of entry and take precautions to reduce or eliminate that path. Sometimes it’s just using readily available PPE and not caring what others around you think!
Since the early ‘70s I’ve gotten the annual flu vaccine, Pneumonia (both 13 & 23), Shingles (Zostavax and later the dual Shringrix), and the Moderna Covid Parts 1 & 2 plus 3 boosters for 5 shots total. Of course I had all the childhood vaccines. None affected my PMR symptoms, I just followed the taper schedule. I never got vaccinated then had a flare.
Never had a “bad” reaction, typically at most it was like getting a super mild disease that lasted 2-3 days max. But that is to be expected, you’re fooling the body to think it’s been infected with a disease causing antigen, should expect symptoms of an immune response!
been researching it just anecdotal evidence of increase in auto immune disease but there is some evidence for covid related increase in auto immune conditions As far as in aware not had covid unless way back as start of it all before diagnosis and testing. Doesn’t help with dealing with this. But going to try an an inflammatory diet Taichi gigong and meditation
Have you read this link? - it might give more understanding of your illness and how you can manage it, rather than let it dictate the running - and if you are having to increase steroids you are maybe trying to reduce too quickly -
thank just been following docs advice started at 20 mh reducing 2.5 Mg a week difficult to see doc over hols so just put up with it til got really bad at10 mg (hate going to doctor anyway) so he took advice from rheum who said up to 15 mg and reduce over 3 weeks so am feeling better but it’s difficult to know whether I’m overdoing it or just condition Saturday was waste of space after working Thursday and Friday. But not planning to give into it Really appreciate this forum good information and advice 🤗
2.5mg per week reduction is far too fast - even 1mg per week is pushing it. Early days 10% if the current dose over 3 weeks is fair and then the lower, the slower.
🤗 feeling much better this week so able to do my tai chi and qigong which I think helps hugely with flexibility yoga good too but still can’t get up off the floor 😆have even managed couple of longer walks with the dog. Might even manage to get back to the wild swimming and paddle boarding 🏄♀️ if i can get in and out of my wet suit. Cold water supposed to be good for inflammation. Just have to be patient not my strong suit unfortunately. Thank you sooo much for your support
V helpful to read this record. It sounds so like my experience. Do keep us posted Bbg67. I wish you well on your journey. You have made some new friends on this excellent site!
I relate to everything you experienced. Mine was in my hamstrings and upper right arm but progression was over a course of 1 week and at the end of those 7 days I screamed in pain standing up first thing in the morning. Almost fainted from shock and was taken to the ER.
You posted: “…29 Dec – previously taken blood test for PMR (23/12) came back clear. Gutted not to have some form of diagnosis and meaningful treatment plan.…”
I’ve not heard of a blood test for PMR. From what I understand there is no test for PMR and its diagnosis is a process of elimination of other causes such as Lyme disease, RA, etc. A common denominator is an elevated ESR and CRP indicates presence of inflammation but not what caused it. In my case both were extremely high. After a bunch of blood tests from two draws that day, the Hospitalist felt it was PMR and gave me 80 mg Pred and held me overnight for observation. FYI, in less than 1 hr after taking the Pred I was pain free!
This hospitalist, in his wisdom read off the possibilities of what it could be, and get this, the last was ALS (Lou Gehrig’s Disease)! Talk about getting a kick in the stomach. Anyway, given another 80mg Pred @ 10 am and released with a prescription for 60 mg/day. That was the beginning of my journey through the disease.
The blood test was to look for raised markers in the blood, but that’s all I can remember for certain and I was in a bit of a confused daze and by I am by no means medically-savvy. Now you have raised it I will try to clarify this next time I speak to the Nurse in case it is useful for anyone else.
1 hour - Wow that was quick! I suppose mathematically, your “relief” kicked in at 80mg. Mine came at probably the same amount of Pred but at 15mg to took me nearer 5 days to get there.
Good luck to you. I will update when I find out more about the reason for my blood test.
Yes - there is no definitive test for PMR/GCA but in over 90% of cases the inflammation markers ESR and CRP (sed rate and c-reactive protein) are raised, at least for them. In a small proportion of patients they remain steadfastly within what is called normal range, no-one knows why even when raised for them, My normal ESR is in low single figures - it ran at 16-18 for some time, raised for me but still within the range regarded as normal. The blood tests aren't definitive but a just one brick in the wall of evidence that the patient has PMR so aren't as important as some doctors seem to believe - but they can be very useful in monitoring disease progression and management by following the trend.
Thanks for this. I think this was the jist of what she was testing but will still clarify to see if it helps and to satisfy myself.
I think maybe she could sense my innate plebbiness and didn’t go into so much detail sensing that I’d just give her a wide-eyed and gormless look of confusion.
Btw, PMRpro, when you said earlier in this thread 'I could see the Big Version being very useful to inform medics. They need to know what we go through' did you mean Bbg67? If so, I completely agree. He's male and young (compared to most of us)! In this world, I'm sorry to say that DOES help to get noticed..
He said "My own diary has far more detail but is more than any sane reader could bear. " - but it is what doctors need to hear because they are far too handy at dissing our experiences.
When the time seems right, I intend to slightly sanitise my digital scribblings and make them presentable for any interested medical representatives to view (need to edit a few expletives).
Not yet sure who would be interested in seeing them but there is plenty of time to find an audience and they will be useful for me too as details are so easily and quickly forgotten as time passes. It even now seems almost thinkable that I was in so much pain only 10 days ago compared to the virtual normality of today. I know this can change quickly, and this is where the diary will come into its own.
It does...and also proves very useful ten years on when advising others...but then I doubt you are intending to hang around as long as that! ....or maybe you are...😏
just went back to look at my ESR & CRP values upon my admittance to the ER. ESR 78 mm/hr (0-20 ref range) and CRP was 3.5 mg/dL (ref range <=1.0) and Cortisol 31.4 ug/dL ( ref range 2:00-6:00 PM 3.0 - 17). All other tests taken at that time came back normal.
My most recent ESR & CRP was 4 mm/hr and <1 mg/dL
The Cortisol result result done on 12/3/21 while I was at 2 mg Pred/day was 12.1 mcg/dL @ 8:00 AM (ref range 7:00-9:00 AM: 4.0 - 22.0)
I’m so pleased for you and hope your recovery continues. Our history is almost identical but sadly I am no better. You have given me hope that I too have results soon.
Interested to know how you can be sure it is the CBD oil that helped you lower the pred and not just time which happens for everyone? You are about the first person to say it - most people find it doesn't help with PMR itself.
Speak for yourself! The best part of the day for me when I had PMR without pred was after dinner and a glass of wine. And I had 5 years to test the theory ...
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my story so far
Newly diagnosed with PMR
Update on The Story so far
Newly diagnosed with PMR 
Newly diagnosed with PMR 
