I am a very active person and had never heard of PMR. My first sign of an issue was a big one and quite strange. I had just spent 8 straight hours driving and when I got home I could hardly get out of the car or walk. Thighs were killing me to the point of I had to lift my legs with my arms to get into bed. Then the hips / thighs / glutes stayed very sore to where I was hobbled.
What confused things was that I had a bout of prosatatis hit almost at the same time making it awful. Woke up every hour to pee and then had difficulty getting settled as the hip muscles were so sore. Chased the prostatis as I thought this was part of it and the put me on Levoquin and things got worse on the sore muscles. Switched from that to another antibiotic and the prostatitis started to settle.
Hips, glutes and thighs wicked sore muscles so I thought physical therapy might stretch me out and fix things. It seemed to help some but it wasn’t easy and I felt a bit better but it wasn’t fixing anything. Then one morning I woke up and biceps,triceps, shoulders were all sore. Some mornings wrists as well. At this point I was this isn’t a PT issue so I went to see my GP
Saw my doctor and he did a bunch of blood work and said let’s watch it a few weeks as he was convinced it was related to the antibiotics. I wasn’t as sure since symptoms started before the antibiotics. I suggested that my google searches on my symptoms looked like PMR and he said at 65 I was too young for that but it wasn’t ruled out. I was at this time a physical mess hardly able to walk the dogs or do anything with arms as far as lifting stuff . Could hardly put my arms over my head and it was painful.
First CRP test was 2.2 and 3 weeks later it had dropped to 1.2.
I saw the rheumatologist after Christmas and his opinion was that symptoms were dead on for PMR and he said let’s see what 20 mg prednisone does. In 2 days I was 80% better. In 10 days I feel 100% normal. Just slowly ran a 5 k on the treadmill and haven’t felt this good since October. I spoke with the rheumatologist late in the week (wasn’t 100% yet) and he reported they got bloodwork back and although my symptoms were textbook PMR, the bloodwork came back with CRP in the normal range. His view was great that the prednisone had a sharp positive effect but now he wasn’t dead sure of what was occurring in regards to whether this was in fact PMR.
Will see the rheumatologist in 3 weeks but am going to call him tomorrow to see if reducing the prednisone before I get too used to it might be a good idea. It is amazing how good I feel. I went from hardly being able to walk to jogging now.
another wild card was a few weeks before all of this hit , my wife had Covid. I never tested as I had no symptoms but wonder whether it could have kicked off this mess.
This blog has been very educational for me and appreciate the time people take to help each other.
I welcome any thoughts on my situation.
Thanks
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NCStateLine
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It is amazing how good I feel. I went from hardly being able to walk to jogging now...
That’s down to the synthetic cortisol in your system…and higher than you would normally produce… and can give you a false perspective of what’s going on.
That, and nearly everything else you describe sounds typically PMR as does the reaction to the steroids… lack of pain, bloods back within normal ranges, and false energy levels. But be aware as you reduce the Pred to the level your PMR requires on a daily basis things even out a bit, so don’t try and rush off the higher doses too quickly
Covid may well have a hand in your PMR, it could be the last straw that tipped an already stressed immune system into free fall. There are also cases of Covid induced PMR, which seem to have a slightly different form, and patients get through more quickly… you hve to see.
Thanks very much DL. Great information and thanks for sharing. The one bit that confused the rheumatologist was that blood test was back to normal - before I had started the Prednisone. He prescribed it based on symptoms and the pre-pred blood test came later stating all was normal. Appreciate your tempering my pred euphoria
Rhanks for the references. My symptoms increased after both the vaccine in october but impressively after Covid last week in Dec. My neck and shoulder muscles are tight and sore most of the day, my AC joints are both a bit swollen and painful to prod, and I'm not much better after inc to 20mgs for 10 days and now 25mgs for 4 days. G P proposes urgent appt with new rheum if no better after another 3 weeks. CRP staying up at 9 , prev 1, since. Oddly Naproxen gives me great relief but only taking it occasionally.
Arthralgia post covid ( seems quite a recognised thing) has a different mechanism to that of PMR? Ive booked to see GP mid next week, see how it goes this week. Many thanks.
Thank-you for taking the trouble to search that out. I shall put a cold towel on my head and peruse it. At least it doesn't bang on about oodles of interleukins .......That's in the too hard box for me!
The numbers are all too close together aren't they!!!!! I lose count too.
They seem to be coming to the conclusion that mitochondrial malfunction has a lot to do with Long Covid - and also the various symptoms including the muscle and joint pain. I have said for several years that I think mitochondrial disruption has something to do with PMR fatigue etc. But investigating it needs funds. Covid gets money ...
Thanks for that. I'll post under à dedicated heading next week when i might have a better idea of where i am headed. If my 'flare' is simply a post Covid phenomenon not responding to steroids rather than a proper PMR flare then it begs the question whether I should stay on the higher dose of Pred, I'm not brave enough to reduce it without seeing a new Rheumato, it a pity my current Rheumato is such a pain ( Porche driver....10mg or bust.....'nuff said!)
Hello, the sudden onset happens to some, like going to bed ok and waking up and not being able to get out of bed properly. 65 being too young is not true; over 50 is the guideline and average is 70.
I will echo DL in saying your feel good is both false zip and also the fact that it is doing its job. It is your safety net against inflammation, not a cure, while your autoimmune activity is fighting the wrong thing, you. If you are on Pred at the right dose, your inflammatory markers will be normal. However, some people have classic symptoms and never go above normal limits.
Do be careful with this energy and beware of 5k runs because your condition doesn’t go well with too much repetitive strain.
The idea is not to get off Pred as quickly as possible, but to very slowly find the lowest dose that deals with your inflammation. No doctor can tell where that point it. Go too fast and you overshoot. Sometimes it takes a while for the inflammation to build up again so you think you’ve got away with it until one day you are back where you started.
If you cut down on carbohydrates you should avoid the weight gain and high blood sugars that is expected.
Thanks Snazzy - the bit about some folks having normal markers in particular helps with another puzzle piece. I will miss the carbs but do my best Appreciate your thoughts very much
agree NCStateLine. Almost textbook. I felt good after pred. but overdid it. Take it easy and don't reduce too much too quickly. no quick fix I'm afraid and they don't come much fitter than I was. Read my profile. Hope you don't contract GCA as well as that is really bad news. Good luck.
Sry to be the bearer of bad news but doctors, including rheumatologists, aren’t really knowledgeable about PMR. Being doctors many often sound sure of themselves as they urge people off prednisone very quickly. Beware of being pulled in. Getting off too quickly often leads to flare ups which can set you back to immobility or “just” extreme pain.
I’m quite new to PMR, I’m 60 and it came overnight, I was hardly able to walk it was so painful especially my legs, hips and groin area, neck and arms started later. I got diagnosed early Dec and was put on 15mg of prednisolone for 3 weeks then reduced to 10mg. My Crp levels were 24 but came down to 1.7. As soon as I reduced the pains started coming back but not as bad as they were, but daily they are showing up more and more. I went back up to 15mg again and pains are niggling away but bearable. I’m going back to see the doctor again on the 6th Feb. I went over night from someone who is never sick, I’ve never had covid even though I worked all the way through it.
1mg drops are safest to catch the actual level you need. Monthly gives you time to adjust and for the inflammation to build up to symptoms if it’s going to. Symptoms don’t always come back instantly. The standard 2.5mg is often too big a jump for many and 5mg is asking for trouble.
I’m confused, I’m going to go up to 20mg for a week to see if it clears up my flare up, should I then drop 1mg a month from that or go to my starting dose of 15 mg then drop 1mg a month from there on.
Right okay - that’s a different scenario then - wasn’t clear it was a flare sounded as if it was a normal taper. In that case you can drop back down to 15mg [provided you have flare under control] and then reduce by 1mg a month…
A drop from 15 to 10mg is a standard reduction when using pred for acute events - but PMR isn't an acute event, it is a chronic condition, and you aren't aiming to get off pred, you are looking for the lowest effective dose. You start with a higher dose than you expect to need to clear out accumulated inflammation and then you taper slowly to find the lowest dose that manages the symptoms as well as the starting dose did. If the 15mg wasn't a good result - you need to try 20mg, possibly even 25mg.
Once you are as free of symptoms as possible at a moderate dose, you TAPER slowly in a process called titration to find that lowest dose. No taper step should be more than 10% of the current dose - and you were asked to do 33%! At best you will feel that drop badly as the body resents the change. At worst you will overshoot the dose you need at present and the symptoms will flare - and once that happens it can be difficult to get things under control again. No idea why - but it happens again and again. And unless the accumulated inflammation has been cleared out, you have a very narrow margin of error with the dose, even a bit too low will make a big difference to how you feel.
Where on earth do they get this idea that 65 is too young for PMR? The AVERAGE age at diagnosis is 72 but averages are what they say they are! Some are older and incidence increases with age, some are younger to balance that out
The normal markers bit is not that unusual, up to 20% are said to have normal range markers, mine were never out of normal range either but that doesn't mean they weren't raised for me: my sed rate ran at about 16-18 during a massive flare when I could barely move and that is still below the top of the normal range, but it was raised for me, my personal normal is low single figures. Normal range is not a range that applies to each person, it is the range of readings found in a large population of apparently healthy subjects. Someone healthy can have a sed rate of 20 - someone with PMR can have one of 4. It is only a guide.
I suspect that you may well have had Covid very mildly so you didn't notice and then the prostatitis put the lid on upsetting your immune system. If the sed rate had been raised - it could have been the prostatis, no contribution from the PMR - it is a very non-specific test though often useful for monitoring treatment of PMR.
But do be careful about running on a treadmill - a problem with PMR is that your muscles are unable to signal you have done too much. Repetitive muscle actions are poison in PMR and running on a treadmill doesn't have the variety that road or even track running does. The result is that you often don't notice at the time but then develop DOMS (delayed onset muscle soreness) which may be out of proportion for the activity you did and take much longer to resolve. To some extent that may have been what happened after the long drive - even with an automatic, you are holding a position over a long period and the muscles tighten up, causing a phenomenon called myogelosis which is often seen after sitting for a time when you have PMR.
You should certainly consider tapering the dose, you don't stay at the starting dose but taper slowly to find the lowest effective dose - but not too soon, and not in big steps down. We think 2.5mg steps are reasonable down to 12,5, sometimes even 10mg but by no means everyone copes with that and a better rule of thumb is 10% of the current dose and if that doesn't work, 1mg at a time. If you are going to get to a lowish maintainance dose, you usually don't have too many problems tapering at the higher doses but there are always exceptions! It is always a balance, reducing the dose without upsetting your body too much and feeling bad again.
Whatever it is, it is a pred-responsive myalgia and PMR as we talk about it fits the bill, down to the response to a moderate dose of pred, PMR isn't the disease however - it is the name given to a set of symptoms with an underlying cause which can be one of a whole range of things including cancer, In our case, it is most likely an underlying autoimmune disorder which causes the immune system to be unable to recognise body as self so it turns on certain tissues, causing them to become inflamed. Which tissues are inflamed determines the name given - in PMR it is muscles that become sore.
Thanks to all. Really appreciate the time you guys put into this. It is a Godsend for people that are new to it and wondering what on the planet just happened to them. I will keep you posted through my journey.
I too remember feeling amazing when I started taking Pred (in July 2020). All my PMR symptoms disappeared and I generally felt 20 years younger! However, 3.5 years later, I am still on 5 mg and I would not say I feel amazing, I would say I feel okay. Most of the time. I have enough energy and low enough levels of stiffness that I work okay, and go swimming, but life can seem tiring at times. This forum has been so helpful in navigating the maze of information about tapering. I have decided to stop at 5 mg (having painfully flared after getting to 3.5 mg) until I am good and ready. No point enduring pain for the sake of it. Pred is a wonderful drug but sadly not an actual cure. Welcome to the group and good luck on your journey!
Thanks - sounds like me exactly and I would rather have my expectations tempered now than spike the football and be sad about this later. How long did you feel great? I am on three days now of pred inspired euphoria. My plan is currently to see the doc in a couple of weeks and start the 10% tapering so from 20 to 18 and so on. Appreciate your help very much.
Also - I am on a weekly 70mg of Alendronate for bones - does that sound like what others have used?
Do you actually need to be on AA? If you do, fair enough, but many don’t get on with it, so you don’t need it why take it.
Have you have a DEXA scan to ascertain the state of your bones? You may not require it -most patients (in UK) are on a vitamin D/calcium supplement and that’s all they require.
I was on 15 mg to start and felt fab. As I reduced slowly I still felt okay, it is a gradual deterioration! I started doing Figure 8 workouts and feeling very fit and healthy! Lost weight!! Below 10 I was still okay. Down to 5 still okay. Did not feel amazing any more though. Below 5 mg I start having problems, hence my decision to loiter on 5 mg. I don't want to be inactive, lose more muscle tone or be miserable. Make the most of the high doses and be prepared to slow down and rest when you taper!
I was gifted with PMR at age 50. My labs have never been abnormal (CRP and SED). A UNC Rheumy declared I couldn't have PMR due to age and clean labs. It would be wonderful if she had been right.
Point being, your Rheumy shouldn't get to exciting about the lack of qualifiers.
And bouncing around your Pred dose will make things more rough in the long haul.
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