I've been recently diagnosed with PMR, I had never even heard of it until my recent visit with a Rheumatolgist... I won't bore you with too many details but after skiing 3 or 4 days last December my knee blew up and looked like an over ripe cantaloupe. After a couple of weeks of dealing with a bum knee all of sudden my upper arms started having an intense pain, not in the wrists or elbows, just the shoulders. The pain was so bad that I couldn't even lie down in bed, spent a few weeks sleeping in a chair in half hour spurts.... We live in northern VT (USA) so not a lot of great health care options up here, can't even get in to see a Primary Care Provider. Took 6 weeks to get into a rheumatologist who is 2 hours away, as soon as he saw me he put me on 40mg of prednisone. Not kidding when I say that within 2 hours my shoulder pain had subsided by probably 80%. I'm currently working on the taper, went from 40mg to 20mg which was mostly okay, the shoulder pain is back but no where near the intensity on no prednisone. Tried to go straight to 10 mg 5 days ago which was not a good idea, currently back on 20mg as of yesterday.
This website is an awesome resource and I thank all of you who share your expertise. My biggest question at the moment is: 20 mg of prednisone seems to knock down the shoulder pain about 80% for most of the day, however it comes roaring back at about 4AM. I try to hold off on taking the next dose till 7:30AM thinking that it maybe doesn't provide 24 hours of relief. I'm wondering about splitting the dose, suggestions on this website seem to center around 2/3s in the morning and 1/3 before bed, any feedback on if this helps prevent the early morning flare or if it's not worth sacrificing the full 20mg effect that helps during the day? Thanks again for all of your stories, I feel lucky that so far I'm only dealing with the PMR and not the GCA or some of the other horrible stuff some of you are having to live with. Appreciate you all and yes I'm totally embarrassed by our current president who I didn't vote for!
Dave
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Greendrake
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Maybe have a look at this link - general information on what lies a head, and explains about the 4am shedding of substances [cytokines] which causes the pains you mention and it happens to most.
It’s a bit lengthy but please hang on to it - and dip back into it when you need.
The splitting of your dose may well help the 4am issue as there will be some Pred in your system ready to deal with that when it happens. But early days it’s best [in my view] if you can get control with one dose - it’s not always achievable I know - but at higher doses I would have expected that to be the case.40mg is a fairly hefty starting dose for PMR - but maybe because you are male and well-built..
However, I would wonder if it’s GCA rather than PMR … as it’s mainly shoulders [having been down that route]. What about hips and is it only one knee or both?
You don’t say when you actually started on Pred, but I’m guessing about mid February, so you have dropped down quite quickly… which is fair enough when you have everything under control…but at 80% improvement it might have been prudent to be a bit slower.
Pred doesn’t cure your illness, it just controls the inflammation side of things, and you need to do your bit by adjusting lifestyle, you are not ‘back to normal ‘ - so I’d stick at 20mg for 3-4 weeks and see if that 80% can be improved. If not then I think you need to have a discussion about it being GCA. It may not be, but I would considering it, and so should the Rheumy. To that end, think another discussion is advisable - can you contact them by phone, email, zoom?
If it does settle and is PMR rather than GCA , then much smaller drops, so you’ll need smaller strengths of steroids to be able to do that. Usual guidelines state 2.5mg from 20mg down to 10mg, then 1mg a time… but not everyone can manage the 2,5mg drop.. so it’s a matter of seeing what works for you… it’s not a race, it finding the lowest dose that controls your illness.
As for your last sentence, we won’t hold you personally responsible…😅😂.. but probably best not go there though…
Thanks for the link, your article is great! I'm not sure why I was prescribed 40mg of Prednisone to start, it does seem too high for PMR and too low for GCA. My initial thought is that since I had been suffering from PMR(maybe GCA?) for 2 months without any treatment other than Ibuprofen that the intent was to overcompensate and get the symptons settled down quickly, which it definitely did mostly... or maybe they gave me a higher dose because of being 6'1" and 215lbs? I have a follow up with the Rheumatologist in a couple of weeks so I'll suggest some more testing to rule out GCA. My symptoms have been pain in the shoulders and thighs/knees but I haven't had any headaches, changes in vision, jaw pain etc. that might point towards GCA, however I know it's different for everyone. As far as the tapering goes, I'm going to stick with the 20mg for another week or so and then start the 2.5mg taper, what's your thought of time intervals for each drop? Every couple of weeks? Or maybe every month? I guess I need to learn how to be patient now that I have this...
I always went for monthly reductions -but based on how I felt -and certainly early days whether the bloods were okay as well.
Not everyone can manage 2.5mg reductions under 20mg - so be sure each time -and don’t just plough on regardless.
I had GCA and even though higher dose reductions were easy, once I got to 15mg I just reduced 1mg a time -and around 7mg by only 0.5mg a time. You will know what’s best for you when the time comes -so listen to your body and your gut..we all have slightly different journeys- and despite what many doctors think one size doesn’t fit all..
If you aren’t sure at any time about anything -then stop and think about it and ask us -why we are here…
PS - as my article say, males very often get through these diseases better than females.. so good luck.
As DorsetLady says it is time to slow down at 20mg. PMR is an auto immune disease and it will sit in your body for the rest of your life. It is now a matter of going into remission which on average takes two years. It can be a bit shorter and it can be a lot longer! The mantra is rest, rest, rest. PMR is life changing, but you will come out the other end. Just look after yourself.
Hello and welcome to the club. Piglette is correct in that this condition does indeed require rest and pacing of activity. But easier said than done. Life can get in the way and saying no is not always easy. I no longer attend group family activities and social events but I do see immediate family on a one to one basis and that works. My aunt had PMR and I remember she went to bed for 2 hours every afternoon. She recovered after two years and returned to a career that involved a lot of travelling and lecturing. Browse round, join in, you are most welcome.
Hi and thanks! I'm definitely not opposed to afternoon naps but the whole slowing down is a bit hard to swallow at this point, guess I better get used to it. After reading many of the posts on this website I'm hoping that I become one of the lucky few who manage to recover in 2 years, fingers crossed!
I, too, struggle with the necessary slowing down and pacing but I am learning, sometimes the hard way when hit by a relapse and wondering why 🙄Probably best not to put a time limit on it for yourself, it will only put you under pressure and could lead to disappointment. I have only been on this road for 7 months. I just take it in small chunks and try not to look too far ahead. Like I said I am learning, and don't always get it right.
Hi. Sorry for discovering this horrible disease. This is just my opinion (experience if you like) but I think at higher doses you can split the dose to good effect. Say above 14mg. But the later your second dose, the harder to sleep (I need a sleeping pill). Below 14 (say) the split dose may not provide enough prednisone at one time to control the PMR. Just my opinion. The half life of prednisone is about 3 hours. After 5 x 3 hours you will basically be at zero.
Hi, and welcome to the club! The experts have given you the most important advice and you will find they are always here to help. I will just chip in to say that this is a long term illness that you have to get your head around and accept. It's not a virus, it’s your body saying it’s had enough. Try to accept that for the next year or two you will have to take things slowly: don’t stress, don’t over exercise and listen to your body.
A good anti-inflammatory diet is essential. Cut the carbs, sugar is the devil. Eat lots of calcium rich foods because the preds leach it out of your bones. It is sometimes called a Mediterranean diet plus (+ nuts and seeds). You might cut your alcohol intake a bit but I found I don’t have to be totally teetotal.😊
I found it really useful to keep a PMR diary (Amazon). The preds gave very quick relief but it was a long time before the early morning aches and pains subsided and they come back in a cycle each time I taper my dose. It is interesting to look back and see how much you have improved. It also helps to diarise food intake and exercise so you can monitor what's helping and what isn’t.
You are just a youngster. You will pull through this quite quickly but don’t rush it because recurrent flare up will just delay your recovery.
Like you at first I found a single dose first thing in the morning didn’t last 24 hours so I took 2/3 early and then 1/3 at 4pm. That worked. Then I tried moving the second dose to lunchtime. That worked. Then I went back to a single dose again and that is now working fine. I keep experimenting/adjusting as I feel my body changing/adjusting.
Late to the party - I'm on holiday and just catching up on a day home alone!
I would split - 2/3 in the morning, the rest later enough to stretch the effect to 24 hours, lunchtime may be ideal, well out of your system by bedtime.
Not entirely convinced it is PMR - that knee is not typical of PMR and it sounds as if the knee and one shoulder predominate????
Slow down - only you can tell what your body will accept but 2,5mg at time max. not more than monthly and if that makes you struggle 1mg at a time. Pred is a management strategy NOT a cure.
Thanks for all of the replies... I feel like I'm getting more useful information here than at the Rheumatologist's office! Maybe whatever I have is more than just PMR or something different entirely, however the prednisone definitely knocks the symptoms down a bunch (but not entirely). I think I'll stay on my current course for another few weeks before I start experimenting with the dosage splitting but I definitely am intrigued by the positive results some of you are reporting.
On another note I have another question for you all. I keep forgetting about this but last Fall I had what I thought was an ear infection that was so bad that I couldn't hear out of my left ear. A round of antibiotics prescribed by our local Urgent Care did nothing. I was able to get into see an ENT who prescribed a 5 day course of 20mg prednisone to reduce swelling in the ear canal, not only did this cure my hearing loss but also made my entire body feel great for a week, it cured all the aches and pains that I didn't even know I had. Coming off the prednisone at that time brought all the aches and pains back and at the time they seemed worse than before, I'm starting to wonder if maybe I've had whatever I have for longer than I knew? Has anyone heard of PMR (or GCA) affecting the ears/hearing? Probably unrelated to the current events but I'm curious....
. I feel like I'm getting more useful information here than at the Rheumatologist's office!
Funny you should say that... and you aren't alone in making that comment!
GCA most definitely does affect the ears [ something else a lot of doctors don't seem to know!].. in fact the charity funded ed a study into that some years ago... so you may you have had something hanging around for a lot longer than you realise..
Yes - the NE of England charity provided funding for a basic study to get funding from the NHS. The results were published shortly before Covid and aare described here
It isn't unusual for someone to be diagnosed after being given pred for something and realising all those other aches went and then came back. So yes - it was almost certainly around back then ...
there is lots of good advice here… I will only add that stress doesn’t help. Do what you can to keep yourself grounded, healthy and your stress level manageable. This is essential in the healing process.
I'm totally embarrassed by our current president who I didn't vote for! Thanks for that - he's making life very scary at the moment and it's always good to hear from Americans who give us hope that one day this will just be a bad memory.
Thanks for sharing the study results, very interesting... makes me wonder how long I've had this. And thanks all for the advice on stress and diet, I'll do my best! And good luck to all of you in your own battles, I'll definitely come back often and read your stories when I need inspiration or advice.
Welcome to the group! I joined this week and I'm finding it very helpful and supportive. I live outside Boston. Sounds like you got a whopper of an introduction to PMR with that knee, etc!
Ref your last post (2 days ago) - just to add I think Pred just masks a lot of other symptoms. For about 20 years i had back and hip pain attributed to arthritis in my spine then I had 4or 5 months without pain whilst on Pred from Nov 2023. Then when diagnosed with GCA /LVV last August and started on 60mg Pred the pain disappeared again and like last time came back when I got down to about 15mg. I also had a heavy fall tripping over a curb back in October but apart from the most gigantic bruise on my thigh I thought I was relatively unscathed and was walking around energetically as if nothing happened for a couple of weeks. Then after a few days of going from 30mg to 20 mg (another story) I had such terrible pain in my hip and thigh I could hardly walk. Hard to know whether it was down to damage through the fall, Pred reduction or LVV and as I also felt so ill and fatigued I ended up in A&E. Triage nurse confirmed no serious damage but that Pred at the higher dose. had probably masked the pain I would normally have felt after the fall. Although I have never had ear problems 🤞I have read that it is one of the recognised symptoms of GCA. As I continue to taper I’m mindful that any of the symptoms (though not previously experienced) may raise their head. Welcome as others have said you’ll find a lot of support here.
Thanks for all of the replies! This week I'm finally able to ride my bike (indoors, still winter like here in VT). I'm still milking the 20mg prednisone, thinking about tapering next week but just a little bit trepidatious about the possible oncoming flare, maybe I'm just being worried for nothing but I've been enjoying being able to sleep at night lately... Hope all of you are doing well with your personal battles, I am inspired when reading your stories, keep the faith!
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I'm back with a diagnosis of PMR
Other Symptoms when Reducing Prednisone
How much improved should you be on prednisone?
Update to: Can GCA flare be triggered by a fall? 
