Has anyone been diagnosed with and treated for PMR when their blood test results are “normal”?
Please forgive my lack of technical knowledge but my situation is quite new and I am still researching I have all the regular symptoms of PMR (hideous pain in both shoulders which feels like the tops of my outer arms have been punched, and the shoulder joint feels like it has been stabbed), I also have hip and upper leg pain especially when rising from a sitting position. I have some soreness in my neck and have recently developed some (milder) pain in both wrists and thumb joints. My GP ordered blood tests last week which came back normal - sorry I can’t be more specific but she was looking form markers that would usually indicate PMR and they were not present.
I have previously (4 yrs ago) been identified as having mild arthritis in both shoulders but these have not caused me any problems until late December 22. I am due an X-ray today on my hips to see if arthritis is present there. If the hips are clear of arthritis the GP will treat me as if it is PMR and go down the steroid route, if arthritis IS present in the hips she will assume its not PMR and go a different route, not sure what that means yet.
I am a 55 year old male, normally fit and healthy and active and I am now off work, in near-constant pain and unable to get any sleep at night as every position I lay in causes pain. Sorry for all the waffle but back to the original question - If blood tests do not identify the markers for PMR, could it still be PMR? My symptoms seem to fit perfectly minus the blood result.
Whatever the answer, I am not enjoying this one bit and not looking forward to any of the options ahead 😱
Thank you in advance
Written by
Bigbaldgit67
To view profiles and participate in discussions please or .
Most definitely you can have PMR without raised markers…depending on what studies you read, between 7 to 20% of patients are similarly affected…that’s why they only form part of the diagnosis….
So from what you describe we would all say -it’s PMR.
Maybe have a look at this link, whilst you’re waiting for GP to prescribe steroids…
Thank you very much. I’m not sure it’s reassuring but it is helpful and pretty much what I expected. Much as I dislike what I read about Pred, if it can take away some of this pain I’ll take it. Will hopefully know more in the next few days. I really appreciate your quick response, thank you
Hi and welcome - yes, up to about a fifth of patients with PMR symptoms do not have markers that have risen outside the normal range. The blood results are only part of the picture - they are NOT make or break and later, symptoms ALWAYS trump lab results for monitoring disease progress.
However - not being outside normal range does not mean they aren't raised for you. The normal range is the range of results found in 95% of a large nominally healthy population - 10,000+ is usual. It isn't the range found in a single person when nothing is wrong: if your personal normal is low single figures, the ESR running at 16-18 is considerably raised but doctors won't react if they don't know your normal is much lower. That is what happened to me. Normal range markers tends to me more common in younger patients, i.e. in their 50s as opposed to in their 70s.
There are adverse effects with pred - but having had 5 years of PMR without pred, the difference it made to me overshadowed all the adverse I did experience for a time while on one particular type of steroid. And a good place to start is by cutting carbs drastically - which will help you manage the weight gain side of pred.
Thank you very much for such a detailed reply. I will see how the next couple of days unfold and if necessary show this to the Nurse Practioner who I have to say has been very helpful so far. I would hope she is already aware of this but will ask her to have a look if necessary.
There are things in the last article that I disagree with after hearing stories from thousands of patients in the last 15 years but on the whole it is good. I had ESR levels that were "raised for me" - my CRP has been out of range ONCE, on a day when I had a severe atrial fibrillation episode (undiagnosed at the time) and cardiac issues also raise CRP - it was back to normal the following week.
As you have seen from the expert responses, this is possible, but it's vital to get the diagnosis right. I had a PET CT scan which was helpful as I was reluctant to start steroid therapy without the certainty that this was indeed PMR.
Before I was offered PET, I had tests done for everything from rheumatoid arthritis to Lyme disease. I guess I was lucky that the rheumatologist at my local hospital had access to PET.
Around 20% of PMR patients can fall into that category of normal inflammation markers. It can cause problems if the doctor is not aware of this, particularly if the individual is young. The best thing is to ask if you can have a trial dose of steroids for a week to see if they help, if your doctor is tentative. With PMR steroids usually give a pretty miraculous improvement.
Hi there, the important stuff already given but just to add that the side effects of Pred are not always as dire as the PIL or other people's experiences might suggest. They are only "possible" side effects and not "probable/definite". I've been on Pred now for well over two years and have had very few, if any side effects at all. What they also did do, was give me life back.
Not sure how long it will take you get results of X-ray, but it won’t be that quick, so maybe worth asking GP if she is willing to give you a trial of steroids.
You can take them for 2-3 weeks, and then stop them without an issue, should it not be PMR, but it certainly sounds like it……and if you’ve taken ordinary painkillers and they haven't helped, then that’s more proof it’s PMR rather than osteoarthritis.
Thank you very much for this DorsetLady. I might just do what you say as the X-ray lady said the results will be 2 weeks because they have to go to Derby Royal so a specialist can’t interpret the images before informing my GP who then informs me. Apparently GPs are not trained to interpret the X-ray.
I’ll call the surgery tomorrow as another 2 weeks or more this and I’ll be really struggling.
oh no. How rubbish. My bloods were only a little elevated but was started on steroids straight away. They should have done that I think for you not wait for X-ray results. Keep asking questions and try not to be too fed up. X
I don't know if it helps but the day after I was put on prednisolone 25mg the effect on the pain was miraculous. The pain disappeared almost completely
You might have them continue to take your inflammatory markers I had full blown PMR symptoms but normal markers the first time they were checked I did have high white blood cell count the second time they checked they showed them at the high end of normal but the 3rd check they were off the charts only then did a stand in GP suspect PMR but it was after months of agony one can definitely have PMR with normal inflammatory markers..within 24hrs of prednisone things were so much better the pain was significantly reduced… best of luck
My white blood cells were high despite the inflammatory markers being low. This was attributed to me having a minor cold at the time of the test. Maybe “we” missed a clue…..
I think I’ll ask them to do a repeat blood test when I call the surgery (or as it is now called - “call centre”) later today.
I have just had a hideous night during which I have kept the rest of the house awake with my grunts, groans, screams and expletives. It seems the bigger the dose I take of amitryptyline and co-codamol 30/500 the LESS sleep I get and more pain. Waiting for the clock to strike 8am then going to give the phone some welly in the hope of a sympathetic response from my GP 🤞. Thank you everyone
I was diagnosed with PMR with normal blood results at the very start of the pandemic I didn’t get to see a rheumatologist until 2 years later when my dose of Pred was down to 2mgs a day. The rheumatologist promptly and rather arrogantly told me, because my blood results were normal I didn’t have PMR and most likely never did have it even though I had all the classic symptoms. When I told him about this forum who advised that 25% of sufferers had normal blood results he said that he had been a rheumatologist for 30 years and he had never diagnosed PMR with normal blood results and who was I going to believe him or “a load of . ….". When i said to him that as soon as I got a dose of Prednisone the pain started to lift, he told me that steroids can help with a number of deseases but he didn't offer to investigate mine any further.
I now need to know how i can change my rheumatologist because i dont want to see him again.
You don't HAVE to be under a rheumy, especially when you are at a lower dose. About 3/4 of PMR patients never do see a rheumy, A good GP is infinitely preferable to a bad specialist.
we’ll after reading all the advice and knowledge on this forum for 3 years and having seen a rheumatologist only once, I know who I prefer to listen to and it ain’t that numpty of a rheumatologist
That must be the only possible context in which having this could be perceived as an “advantage”. If only all medical staff could recognise that and listen more carefully to our voices. Having said that I was very impressed with the GP I spoke to yesterday despite it being early days so remain hopeful.
I know this is not a medical forum but I have been reading extensively and have faith that the folks on here are reliable and their experiences that they thankfully share are highly valuable. There is credible medical evidence that PMR can be present despite absence of blood markers, in fact that was my initial question. I can understand a “professional” pouring scorn on amateur opinions, but when proper evidence supports such opinions he or she must take cognisance of it. Good luck finding a more broad-minded rheumatologist!
No, it’s not a medical forum, and although we suggest ways forward we always say check with your doctor.
Many of us may not have medical training (although a lot do) but we’ve walked the walk and worn the T-shirt -and know not everyone conforms to what the book says. Between us we have a bucketful of experience of PMR and/or GCA ….and common sense.
And actually, there are medics who DO accept the sero-negative version of PMR and GCA and some of us (including me) collaborate with their research in the PMR field. When push comes to shove I email Prof Sarah Mackie in Leeds who is probably the UK guru when it comes to PMR. She approves of this forum and drops in occasionally for a read and admits she has learned a lot about PMR thanks to this charity and the forum. It was thanks to the NE charity that this paper was published:
Hi, I had a very similar experience at 49 years of age, still have active PMR now. I was fit and healthy, exercised lots etc, mum of two teenage boys, lots of running around when I started with bilateral pain in my hips, then shoulders, arms etc. You describe it very well. I thought I was going mad! My bloods have always been relatively normal, slightly raised one time but, the Dr dismissed PMR and ordered xray's, scans etc all okay apart from the usual wear and tear. I was in so much pain I asked to start steroids to see if it helped, it did!!
Started on 15mgs and reduced to 5mg and then had a relapse and I've not been able to reduce successfully since.
I'm in the middle of a second relapse after being at 10mg for 6 weeks.
Hindsight, a great thing, I wish I started steroids sooner, maybe the build up of inflammation wouldn't have got so bad and I wish I had reduced even slower than recommended by Dr's and my Rheumatologist!
Thank you for sharing this. I seem to be on a similar path to you and it’s a cautionary tale for the “traditionalists” who rely on blood tests only rather than listen to patients own thoughts, experiences and opinions.
You have made me more determined now to strongarm the Docs to fast-track the route to steroids as it seems inevitable with or without the X-ray results.
My symptoms continue to worsen and although my tired mind could be playing tricks on me now, I seem to have more pain in the neck (in every sense) and both hands as well as shoulders (the worst pain by far), both hips and upper legs.
Good luck with your recovery and thanks for taking the time to reply.
I can confirm you can definitely have PMR with normal blood tests. My symptoms were exactly like yours and the doctor took one set of blood tests which showed signs of inflammation. However before she would prescribe steroids she wanted another test done this came back normal so she refused to prescribe the steroids. The long and short is a few days on 15mg prednisolone gave me an instant ‘cure’ which confirmed a diagnosis of PMR. Try to ask for steroids for one week to see what happens. I wish you the best.
I have just spoken with a very helpful GP on the phone who listened to my experiences and has agreed, indeed offered, to start me on 15mg prednisolone . I don’t quite feel I have been in the PMR club long enough to get away with abbreviating to “pred” yet, but I’m sure it will come over time!
He will call me back in a week’s time to review the situation, discuss my X-rays if back from the specialist and then order some more blood tests.
I forgot to ask him if starting the steroid tomorrow morning means I should discontinue the amitryptyline and Naproxen (neither of which have helped). I’d appreciate any views on this although accept entirely this is not a group of medical experts and will treat any advice with due caution. I’ll also ask the pharmacist when I collect the prescription.
Thank you all so much for you advice thus far. I feel the beginnings of a horrible weight lifting off my knackered shoulders and keep my fingers crossed that the positive and rapid improvements that some of you have seen with this drug also apply to me.
We say pred because it covers both prednisone (in the USA mostly) and prednisolone (in the UK). Prednisone must be converted to prednisolone in the liver to become active. Plus when you type it as often as we do - saves a lot of wear on fingers!
If they haven't helped - really not uncommon in PMR - then there is no point in continuing and the sooner you stop, the less problem you will have with them.
Hope the pred works - and it is always worth trying 20mg if 15mg isn't a spectacular success. It is the bottom end of the dose range.
Neither helped with my GCA-so I’d stopped them before I was diagnosed-and if they aren’t helping no point in taking meds unnecessarily.
As as PMRpro says 15mg may not be quite enough -especially if a lot of inflammation has built up and you live up to your name and are a strapping “lad” !
So do be honest with GP and yourself -no medals for being brave 😳..but a sense of humour does help….
Thanks again DorsetLady. I will take a decent dose of amitryptyline tonight in the hope it gets me some sleep before starting on Pred (there, I’ve said it now) tomorrow morning. Will confirm with the pharmacist later too.
I’m not as strapping as I used to be thankfully. My darling daughters gave me that nickname and set up my email account with it before I could stop them 20 years ago or more and it stuck. I am however aware that I now have to watch my diet carefully to avoid returning to Mr Blobby territory.
I’ll certainly be honest with the GP now I have a foot in the door as I am convinced this is the right path to go and desperately want it to work. I will continue to seek advice and share my own experiences within this fantastic group and wish you all well.
Best of luck to you. I read your story and saw myself in a similar position 7 years ago at age 60. Pain, minimal sleep and going to work was pure torture. Then a physician's assistant suggested something called PMR and gave me some pred for a week to "test". You'll likely see a marked difference in a few days after taking the pred. Mine actually kicked in and made a noticeable difference within 1 day but everyone is different. I'm still on pred, going on year 7 but the alternative is living in the hell you've been dealing with. Easy decision.
ha ha love the story of your username. Good luck and hope you feel bran new in approx 4 days time . That’s the time it took me to go from stiff agony to fully repaired. Please keep us updated
I hope you get the miraculous effects! I remember waking up the third morning after starting pred and realizing after a few minutes that I hadn't had to plan how to get out of bed which for some months had been a painful four step process. First effects, very subtle, were apparent within a few hours of first dose, and by that third morning all my pains were gone!
It seems almost comical that the place you would most often find the most comfort when feeling ill - bed, is the place I fear going the most. During the night manoeuvreing in and out of bed or turning without using the horribly painful shoulders and hips is nigh on impossible. Add to that the fact that I have also prematurely developed “old man’s bladder” and bed has become somewhere I dread going rather than cherish.
I took Amitriptyline with Pred and Celebrex (which is an NSAID like Naproxen, but a bit milder on the stomach) I also took Lansoprozole to protect my stomach, as Pred and NSAIDS taken together can potentially cause ulcers, but I never had any problems! If the pred works, then just be wary of the Dr trying to reduce your dose too fast. I had miraculous results within 24 hours of taking 20mg and was told to reduce down to 15mg after 2 weeks. I wish I'd known about this forum before I did that! All my pain came straight back. I ended up yo-yoing up and down with dosage and never again had the 100% pain relief I'd had with my first dose, even going back up to 20mg. If I could go back in time, I would have taken 20mg for 4 weeks and then reduced to 17.5mg for 4 weeks, etc, etc. I wish you good luck, and can only say that this forum and the wonderful people on it are just amazing 👌
Thanks for this. I will bear your cautionary tale in mind as and when I get to tapering. I can’t tell you how much confidence this forum has given me to stand my ground with the doctors if I need to - it’s worth it’s weight in gold!
I was told by the doctor I had at the time I first presented with the classic symptoms that all my blood tests were normal. The doctor who did diagnose me said my inflammation levels were "normal for my age" which I've since learned is not an appropriate response because it is not normal for a healthy person to have raised markers. Moreover as you've already learned from the comments on here many people never have raised markers.
The other thing to watch out for is the doctor who thinks you no longer have PMR because markers which might have been higher initially are now low, and suggests tapering off quickly. All that means is pred is doing its job! Symptoms always rule and the PMR journey can be a bit longer than you would like, or that many doctors, unfortunately, believe, but the right level of pred (which eventually may be very low but still necessary) gives us a reasonably good quality of life, which is really what we want.
(Started pred 15 mg 2015. Since 2017 have been mostly at 2 mg. Hoping current attempt at taper gets me to zero, but no longer holding my breath!)
My Pred experience starts in the morning. Hoping for the best despite knowing tonight (at least) will be another horrible one with minimal sleep 😭.
Fingers crossed the meds will help and then I can focus on “managing” the GPs approach to getting the dosage settled over time. To be fair, the GP I spoke with today seemed very pragmatic and sensible and listened to what I had to say, albeit on the phone only.
The advice on here will certainly help and helped me massively during the call with the GP. I will continue soaking up as much info as I can so I am fully prepared to fight my corner, thank you everyone.
I have never tested positive for PMR but after a week my shoulder and other pains disappeared. Been on for just about 2 to 3 years and going down to 5mg. Do have other pains which can confuse you but at 80 probably normal. Best of luck.
I do myself have other issues which cloud the picture. I have a 40 year history of spinal/disk problems, multiple surgeries, titanium rods and bone grafts. In addition I have weak ankles due to historical breaks that never set properly but at the moment feel I can distinguish between the “old” problems and the more recent PMR symptoms.
Bigbaldgit67, just wanted to add that I am so sorry to hear you've been suffering so. I do feel for you and know exactly what you mean, as I had never experienced pain like it. In fact, I began to dread going to bed when at my worst, which I never do normally. I started on higher dose than most (25mg) as 15 didn't seem to touch it but was able to reduce relatively gradually and am now on 9mg.
Glad, too, that you've found your way here because, just as you commented, being informed through this forum, helps when speaking to the medical profession. I certainly have found that it's given me confidence to fight my corner, if required. Good luck and do let us know how things go.
I read a bit about PMR in other places before finding my way here. What has struck me is that the more “official” sources seem to describe mainly stiffness and do not portray the absolutely hideous pain that I and most of you have endured. I think that contributed toward my initial reluctance to go to the doctors for fear it wouldn’t be taken seriously.
Yes, I agree with you there. The NHS website doesn't emphasise the pain, as you describe it, for example. It is/was the pain more than anything that I found so horrific - in the end, I was literally crawling upstairs. Pred has certainly alleviated that and, I feel sure, will do the same for you.
As a matter of interest, my ESR markers were not raised. The CRP ones were, admittedly, but as PROpro said in her answer to you at the beginning of this thread, we are definitely not all the same as regards markers. Am interested to hear that, along with the usual sites of PMR pain, you also have some milder pain in your wrists and thumb joint. I have found that, as I've decreased my Pred levels, I've experienced funny things with my hands which didn't happen originally. I mean my wrists have been painful and I've had tingling in my fingers. Will be interested to hear how you are faring.
I don't think it's carpal tunnel syndrome, but not absolutely sure. The last time I was f-2-f with Physician's Assistant, he asked me the same question but tingling etc isn't specific to the fingers he proposed ie it seems to be all of the fingers.
Ah! thanks for that info, PMRpro. Never had any of this trouble before PMR raised its head but have just read Bcol's comments which are interesting too. I think I read somewhere that CTS is an auto immune condition or have I got that wrong? On second thoughts, perhaps PMR inflammation is moving to my hands/wrists.
Just as an add-on to this, which may interest members, I know of an elderly man who has recently had problems with bilateral pain in his wrists/hands. At first, his medics said it was PMR and he was started on Pred. Now, apparently they have changed their minds and instead have injected something into the area (I presume corticosteroids), What IS interesting is that he was told 3 times that he must not have a Covid booster in future. I should add that I don't know this man personally - he is the father-in-law of my old schoolfriend's daughter, in case you wondered!
Hi, just a thought to consider, when I had got down to 5mg CTS symptoms started to show themselves with a vengeance. I had a chat with my doc and we both decided that as it was quite possible that same inflammation causing the PMR was causing the CTS and it was in the middle of the pandemic and neither of us felt that surgery was a good idea at that time, we decided to go back up to 10mg and start that slow taper down again and see if that worked. It did yes, its kept me on Pred for an extra few months which is no problem as I don't get side effects (or at least ones I know about) and its saved surgery as well as removing the pain/hassle. I'm on 2.5mg at the moment.
That is v interesting Bcol, thank you. I noticed the symptoms when I tapered to 8mg and my clinician suggested I go back to 10mg. I told him I was tapering slowly below 10, though I don't think he approved (he thinks I should reduce by 1mg on a monthly). So, not as understanding as your doctor. I am due to see my rheumie in early Feb, so I wonder what he will say. At least I'll be prepped with info from the forum!
hello , I have been treated recently with steroids due to ? PMR . Blood tests were normal . Within 24 hours of commencement of steroids I was able to move again . They really helped me with this episode . Now tapering down and waiting to see rheumatologist. Steroids definitely helped me .
Welcome to the club none of us want to be in! My blood tests are normal, too, apart from raised eosinophils due to my atopy (allergies, etc.) One thing to be aware of is the problem of deciding whether it really is the *joint* hurting or the muscles surrounding the joint. The first is arthritis. the second is not.
It’s just over 24 hours since my first 15mg dose of Pred and early signs are promising.
I slept better than I have a for a few weeks and got up at 630am. I had less pain when waking several times during the night in both hips and left shoulder. No significant change in right shoulder (which has been the worst symptom since day 1).
By 6am the beneficial effects were less noticeable and some pain had returned to hips and left shoulder but to a lesser extent that before. Right shoulder remains terrible, but hey-ho early days and I’m thrilled to see some improvement so quick.
I think if I’d got out of bed an hour or 2 earlier and “cashed in” on the progress it would read more positive but what can you do at 4.30am? Staying in bed and laying on the affected joints a bit too long seems to have come at a cost but overall I’m pleased and encouraged.
2nd dose of Pred just on its way down and my optimism is intact. Still only one dose…..slowly slowly catchy monkey 😁🙏
Good to hear…..if you wake around 4.30 you could take Pred with a spoonful of yogurt or piece of cheese….and then try and get another hour or so sleep/rest giving the meds time to start working… sure you have earphones/EarPods for phone so you can listen to music/podcast without waking others.
As we said you may need slightly more than 15mg, but give it a week or so to see if things improve…..and just keep brief notes of when symptoms resurface…not just for your info, but so you can report to GP.
The ideal time to take plain pred to minimise morning symptoms is 2-3am - then the pred is at its maximum in the blood as the new batch of inflammatory substances is shed at 4-4.30-ish so they don't get to do anything, So taking it when you wake is a good thing. Later it may get a bit more complicated but we'll cross that bridge if you get to it.
2-3am is fine - my useless bladder rarely fails to cause a commotion at that sort of time so I will be up and about if only for couple of minutes.
Now I need to find a good hiding place upstairs for a piece of cheese where it safe from other household predators 🤪
Thank you for this snippet, I don’t remember seeing such a recommendation anywhere else and the GP only said to take it in the morning which is very vague.
I can’t believe how much I have learned on this forum alone, and I’m very grateful to you all.
The original study was done for RA and it resulted in the development of a delayed release formulation which was used very successfully for RA and was even approved in the UK for a time. It's considered too expensive now and would be one of the things I'd lose access to if I returned to the UK. I take it at 10pm and NEVER have a bad morning due to PMR! My rheumy loves the things he has access to here in Italy that he wasn't able to use in Austria when he worked there.
"Now I need to find a good hiding place upstairs for a piece of cheese where it safe from other household predators 🤪".
...under your pillow...maybe not, might get too warm (cheddar might be okay, but not camembert or brie!!) - how about sock drawer 🧦😲
Paperwork does say morning.....but whatever suits you best.... people take it at all times once they get to know what's best for them... not an exact science... as you'll discover!
Thank you. I will try taking the Pred when I wake rather than when I get up. I am glad to see you can recommend something as small as a piece of cheese or a spoonful of yoghurt, I was concerned that “take with food” meant a significant meal and I am not really a breakfast eater.
On your 2nd suggestion, as it is still very early in my PMR experience I downloaded a diary app for my IPad yesterday and was able to retrospectively fill it with PMR details virtually from the first symptoms. I intend to complete it every day with meds, feelings, pain, progress, interactions with medical professionals and other observations so that I can show a degree of credibility in conversations with my GP and others.
I hope over time to find that I can share my experiences with others on here who finding it as overwhelming as I did only last week. I will continue to post brief updates here unless it starts annoying people!
“.. will continue to post brief updates here unless it starts annoying people!“
Takes more than that to annoy us🤣😂.. and we like to know how people are getting on.
But maybe raise a new post when you have something new to say-then most get notified.
Only those who have saved a post (usually PMRpro and me) or if you reply to a specific member will get notified automatically once your post is up and running….and some threads get very long.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
PMR condition & ESR blood test results
Normal inflammation blood markers- PMR symptoms
Possible PMR Diagnoses: Phoenix,Az
Flare with normal blood results
Blood test readings now normal.
