I was diagnosed with PMR September of 2020. Three blood tests were indicating inflamation. CRP, ESR and GFR (I think). None of the numbers were extremely high. I was suffering from pain which felt like it was everywhere. Could not bend down, could not turn in bed. Weakness in my legs. All that. My pain disappeared on prednisone within 3 days (15 mg). BUT I cannot tell you what stiffness is. I don't have that problem at all. Can usually just roll right out of bed in the morning. Is this symptom vital to the diagnosis? Is it possible I'm dealing with something else? Further, since starting on pred., my numbers are all within normal range.
Does no stiffness mean a misdiagnosis?: I was... - PMRGCAuk
Does no stiffness mean a misdiagnosis?
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orangemax
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Morning Orange max and welcome to the forum. When you have some time, a visit to the FAQ's is a good place to start. You say you were diagnosed in september 2020 which is around 19 months ago and started on 15mg. What sort of journey have you had and what dose are you on and how are you feeling now?
Oh my my goodness! I was diagnosed in 2021, not 2020. So sorry. I'm so glad you repeated the date! So 7 months, rather than 19 months. I was diagnosed by my primary care physician, and then I elected to go to a rheumatologist. I am not impressed, and am going to see another rheumatologist in May and hopefully get more feedback. Everything I know about PMR comes from this site and the Mayo Clinic site. The current rheumatologist is in a big hurry to get me tapered down, because I have osteopenia. But he is only interested in putting me on Prolia and isn't interested in discussing other options. I have managed to get down recently to 6.5 mg, and was doing well. I think that's pretty good for 7 months' time. But when I went to 6.0, the pains started kicking back up, and I decided to go back to 7 mg which is where I am now and have been for 4 days. I figured I'd stay on 7mg until I'm settled back down and then go back to 6.5 and stay put for about a month. Six point five seems to be the sweet spot for me at this time. Then my plan is either the deadly slow plan or DL's 7 weeks taper to get to 6 this time. Last time I tried DL's 5 week taper and obviously that wasn't slow enough. And for now, this is where I am. So I was wondering - is that "Border Collie"? Great dogs!! Had one!
Hi again, yes your intuition is spot on and indeed a Border Collie, just back from the early morning walk. I've never had a Rheumy and my own Doctors have looked after me from day one. In fact, they tend to leave me to get on with it but are always there if/when I need them.
Your test numbers being normal is good as it is showing that the Pred is doing its job and the inflammation, at the moment, is not getting any worse. Likewise the lack of stiffness shows the same. I have been very fortunate in losing most of my stiffness and pain once I was on the Pred and back to pretty much back normal re getting in and out of bed, the bath etc after a couple of months, provided I stayed sensible. I know there are many others who have not been that fortunate, it is a disease, like the Pred that we have to take, that affects individuals in very different ways. My last set of tests were perfectly normal.
Think you have done really well to get where you are in a relatively short space of time and I think that your thoughts about going back to 7mg and staying there until you feel settled again is good. There is no rush and you will get lower as and when the disease/inflammation allows it. .5mg every seven weeks may work and you won't know until you try it but if not then getting past your "sweet spot" may need even longer taper periods. The other thought is have you been more active recently, is there a possibility that you have overdone the work/exercise because you were feeling good? If so then reigning that back may/will help.
Well, you know, you very well might have hit the nail on the head, Bcol. I have had so many spinal issues over the years, and have always just pushed through the pain. Running one's own business, the boss doesn't get many sick days off!😅 I'm just so used to not giving in to it. It was that way before I got diagnosed, as well. I just kept finding compensating ways to deal with the pain, but refused to let it beat me. Fortunately, now I'm retired. I guess I have to somehow change my ways. I don't think I can win this one with that kind of attitude. But I do find it interesting that you also are not dealing with stiffness. I was really wondering about that bit. So I guess it must be the real thing. Ah, well!!
Hello. It's good that you accept that your previous busy lifestyle has to change. That doesn't mean you have to give up on life, it means you have to adapt and when you think about it that is natural as the different stages of life come along: for example, you wouldn't jump off a high wall or stay out half the night at your age, would you 🤔? You are early on in your PMR journey but you've done so well to find out as much as you can about this condition and knowledge is power. There are things that you can do to limit the risk of your osteopenia progressing; if you put the term into the search bar you should find lots of info. Don't be bullied into taking another drug. I assume you've had a dexa scan??
I don't have stiffness as such, just the lack of confidence in things like dismounting a chair I've stood on to reach a high shelf ignoring that voice in my head saying, 'Use a stepladder!'
Good luck to you and I hope you find a rheumatologist who will work with you.
Hello 123-go. Thank you for your reply. I appreciate your suggestion of doing more research on how to combat the osteopenia. I think that is something I will definitely do. I have been holding it at bay for years - pre PMR. And DEXA scans every 2 years for at least 2 decades. Of course I recognize that being on prednisone now, is definitely not a plus in this situation. And I must make some smart decisions. But I just don't have a good feeling about the way the rheumy is pushing so hard for the Prolia. I don't like the fact that he won't even discuss options. I sure hope the appointment with the next Rheumatologist goes better. But if not, then I will just go back to my internist PC doctor and go it on my own and hopefully with her help. Kindest regards.
Your dexa results should play a part when considering bone meds: personally, mine would have to be pretty grim for me to agree tonthem. I recall that people on the forum have held progression of osteopenia at bay through diet and the right type of exercise and there have been reports of it being reversed so in these respects we do have some control.
Here's something to read as a start:
bonejoint.net/blog/fruits-a...
and this (for osteoporosis but applicable):
tristatearthritis.com/polym...
Stay positive and confident 🙂.
PS. If you ever consider physiotherapist, make sure that the therapist is knowledgable in PMR.
Hi, 123-go! You make a good point about a physio who understands PMR. My first experience with a personal trainor was not great because she really did not know anything about it and promised she would study up on it first. But that was pretty much a total bomb. As easy as she tried to make the exercises, I was in a lot of pain after trying to do them. Will now go a different route.
A personal trainer who isn't a qualified medical physiotherapist is probably NOT a good idea! Even physios don't always get it right and can give rise to more trouble than help. It parallels the graded exercise approach that was advocated for ME/CFS and which has now been discredited as worsening the problems. Working with healthy muscles that are just unfit is a very different matter.
What are your dexascan results? Osteopenia is NOT a medical condition that requires heavy duty medication, it is a status meaning your bone density is lower than it was when you were 21 and one that applies to almost everyone over 40. I was osteopeneic 2 months into taking pred nearly 13 years ago. At my last dexascan 18 months ago my bone density had hardly changed in the intervening 11 years - with not even oral bisphosphonates never mind Prolia.
Ony by taking the ACTUAL evidence into consideration can you decide if Prolia is appropriate or whether calcium and vit D plus non-pharmaceutical approaches will be the place to start. HeronNS's story is here:
healthunlocked.com/pmrgcauk...
Thank you for your reply. I've been on so many different osteoporosis "cures" over the years. Due to changes in medical plans and doctors, some of them I was on way too long. Was started on Evista first, probably about 25 years ago in my 5 0's. Then graduated to Actonel, which I was left on too long. Then eventually, Fosamax, which I was on for probably 7 or 8 years. I took myself off of that about 5 or 6 years ago against my then doctor's wishes. So now I'm taking calcium and Vit D3. Exercise is against my religion (kidding) 🙃 But I work 2 or 3 days a week in our library and get plenty of walking in there. Some days 8000+ steps within 5 or 6 hours. But now, with the PMR, my body won't let me do that these days, and I've had to back off severely. My Dec 2020 DEXA showed (compared to my 2018 DEXA) a 4.8% decr. in bone mineral content in the left hip, a 7.0% incr. in lumbar spine, and 3.3 inc. in rt. hip. They say I have a 10 year fracture risk @ 31% probability (yikes!!) of a major osteoporotic fracture & 16% probability of a hip fracture. Not wonderful, huh? I hope I have sent the information you need to form an opinion. I'm not really very conversant on this topic. You would think I would be, but the doctors just don't share much. Sometimes I wonder if the doctor even understands the reports. Heron NS's story is pretty amazing!! She's done all the research already!! I have saved the post. Thank you for sending it. I'm going to have to reread it a couple of times.
What are your t-scores - if you have osteopenia? Have they ever investigated you for a parathyroid problem? How is your blood calcium level? Do you know?
Calcium checked not too long ago. Was fine. Never seen a flag on that one. TSH and T4 also fine. I'm sending you what I have on the T scores. Hope you can make it out 2018 2020
L Spine -2.0 -1.4
L. Fem neck -1.3 -1.6
Rt. Fem neck -1.8 -1.6
That's OK - it always happens if you just use spaces or tabs.
My personal opinion on the basis of those numbers is that at present you really do NOT need prolia/denosumab. Your t-scores are at a level to be expected at our age and normally they would say calcium, vit D (more than is in the usual calcium/vit D supplements) and exercise. A t-score of -1.1 is the beginning of the osteopenia range, down to -2.4. You are in the upper half of that. Osteopenia is a guide - not a diagnosis.
You DO need to keep an eye on the dexascan to be sure you don't lose a lot of bone density because of taking pred but you haven't lost much in the last 4 years. If you start taking Prolia jabs now you will be on them for life - there is a rebound loss of bone density immediately after stopping it that is associated with fractures so either you stay on it or you switch to oral bisphosphonates again.
I might be wrong but those fracture risk scores are probably heavily biased because you are on pred. There are lots of ways of reducing fracture risk that don't involve taking pills - and the rate of hip fractures was already falling before bisphosphonates were marketed as the saviour of the broken hip!
I was just diagnosed with PMR and put on pred in Sept. of 2021, so no, that wasn't their cause for the bias. I appreciate your opinion on the Prolia, because my gut has been strongly telling me no, and I've been unsure why. Then the more I've learned about it, the stronger I've been feeling about it. I'm pretty sure your opinion has put the cap on it. But what would you think about my going back on the alendronate? I've been off of it, not really sure, maybe 5-6 years? Or should I just not do anything for now and just keep an eye on the DEXAs. I'm due for my next one this coming December. This will be the first once since I'm on the prednisone.
i wouldn't be taking AA or anything else except calcium and vit D with t-scores like that.
I wasn't talking about a personal bias - which factors are included in the FRAX score influences the result they get. But the many years you have been on bisphosphonates is also a risk factor for the formation of cracks in the bone - which also increase the risk of the atypical fractures that are seen.
DorsetLadyPMRGCAuk volunteer
Very quick to get as low as you are, so probably too quick…as discussed. No matter whatever tapering plan you use, if you go too low you go too low. A slower plan only helps you get from a. to b. easier, it’s not magic!
Now you’re back at 7mg (hopefully enough) stay there for a good few weeks before you start reducing again….
as also mentioned adrenals need to start thinking about reawakening so the slower you reduce the better…
Plenty of time.
And no stiffness doesn’t mean diagnosis incorrect -just means PMR symptoms are under control!
Thank you Dorset Lady. I will take your advice and remain at 7mg for at least 3 weeks and hope all will be stable. Do you think your 7 week plan when I resume tapering would be slow enough, or should I go even slower? Looks like Bcol agrees with you regarding 7 weeks as well. And I would do .5mg at a time. Glad to hear that no stiffness is a good sign rather than a confusing one.
The 7 weeks one should be okay, but I did an ultra slow one for people with real issues……..and that’s just extending the 7 weeks to 14 by repeating each step.
Not sure if you requested emailed copies - but it’s included in that anyway. If you haven’t got spreadsheet and want it - just send me a private message with email address (not here on public forum)
On the 5 week plan, I was just using a regular calendar. BUt probably for the 7 or 14 week plans, a spreadsheet would be a lot easier. I'll be in touch. I think I"ll try the 7 week plan in a month or so, and if that doesn't get it done, I'll go for the 14 week plan. Thank you!
No probs -just contact as and when !
PMRproAmbassador
If 6.5mg is what you need - it is what you need. You will get lower - just not yet. You aren't getting stuck there because you have reduced fairly quickly - that will work until you get to the amount you need - and that may well already be a fairly low dose if the disease activity is low. What you won't manage is to get past that lowest effective dose however you try to reduce - slow, small, tapered - the lowest dose is the lowest dose at the time. And you are at a dose where most good doctors stop worrying too much.
One of the things that has emerged from research meetings with patients and rheumies is that it is very difficult to differentiate between the effects of pain and stiffness and express it adequately. I couldn't do a lot of things but it was mainly pain that stopped me doing them - and that included getting out of bed. It can have similar effects.
I was so glad to see your information about differentiating between pain and stiffness. I guess it might possibly be in each individual's perception of what they are dealing with. For me I always felt like it was pain and weakness. At it's worst, I don't remember noting any stiffness, and still don't deal with that now. So it got me wondering. After all of these great replies I've gotten, I feel far more confident about the way I'm dealing with my issues. I am so greatful for this site. I would have been floundering miserably for the last 7 months without all of you great people.
Hi Orangemax! I was diagnosed in 2021 and was advised by doctors to reduce, reduce, reduce and I did . I got to 6mg from 15mg in 6 months- but I paid for it! The pains returned with a vengeance!!! Through the wonderful advice from experienced folk on this site I returned to 9mg and am staying at this dose for a month when I will reduce by .5mg and stay there for another month. I know the doctor won’t be pleased but I want to have as little discomfort as possible so I can enjoy a good quality of life. I repeat what was told - it is not a race but a matter of listening to your body and reduce SLOWLY! Keep in touch and let us fellow travellers of PMR, know how you get on. 😃
Hi, Dartmoor4. Looks like you and I joined this club around the same time. And have pretty much been paralleling our treatments as well. Yes, my Rheumy was pushing from the very first visit to reduce reduce - like every 2 weeks. But after getting on this site, and the Mayo Clinic site, I decided I'd pretty much go my own way using their insight. I'm so glad I have. I'll be watching for your updates. Good luck on your journey. And thank you so much for your response.
I had dreadful pain before being diagnosed in that I could hardly lift a spoon to my lips. I did not consider it stiffness, I considered it excruciating pain, but my rheumatologist said I did have stiffness! He also wanted me to reduce at 5mg initially after 3 weeks which was a disaster. My rheumatologist said reduce and my body said don’t reduce. I have learnt to listen to my body not the rheumatologist.
Terminology is so important, especially when trying to communicate with the medical profession which has an understanding of certain words not quite the same as the lay person. I think stiffness is a case in point. I would define stiffness as difficulty moving a joint with consequent restricted range of motion. I have stiffness in my fingers caused by osteoarthritis. Otherwise they don't particularly hurt. However I remember the days of PMR pre-treatment (and to lesser extent with flare last year) where I couldn't move because of pain. I did not perceive this as stiffness. I expect a doctor would call it stiffness, but if I lost range of motion it was only because it hurt too much to move further and relief of the pain also allowed free motion.
This reply is to piglette and HeronNS, because I think you are both saying the same thing, and it is exactly as I perceived my condition. Stiffness didn't seem to be a problem. Stiffness was stopping me from doing anything. Pain was my problem. And weakness was a problem. Early in the day, the only way I could move my left arm was to pick it up with my right arm, but it wasn't stiffness that held back my arm, it was pain. If I picked it up and moved it, there was no pain. The oddest thing I've ever physically experienced! But later in the day, my left arm functioned fine, with very little pain. And I have problems with my legs late in the day and evening time. They feel very heavy and weak, but it's not really pain, and it's not stiffness either. This PMR stuff is really weird, isn't it? Thank you for your responses piglette and HeronNS. Wishing you the best.
Your journey so far mirrors mine, I had to pause the tapers a few times around 7, then at 4-3mgm. I left it about a month, then picked up again successfully. It does seem to take ages but I’m now on 1mgm & feeling well.
Couldn't it be the Pred. doing it's thing? Honestly, after I was diagnosed with PMR it seemed to get better. It can get better and it can go into remission or even go away from what I was told. My doctor told me that when treated with steroids it tends to really help.
Sorry - really don't understand your point? The whoel reason for using pred in PMR is that it DOES relieve the symptoms because it combats the inflammation. Very little else does which is the reason for using it.
Sorry, not what I was told. I was told my biologic/Actemr is reducing the inflammation
Not talking about Actemra - currently it isn't used for PMR except in very special circumstances or certain countries like the US. You mentioned pred.
Actemra stops the production of the inflammatory substance, the cytokine IL-6 which is one of the underlying causes of the inflammation in GCA and PMR, Which obviously stops the inflammation. Pred has an anti-inflammatory effect so relieves the inflammation after or while it develops - it doesn't stop the biological process that creates the inflammation as Actemra does: pred mops up the puddle from the overflowing bucket. Actemra turns the tap off.
Well, it's working for my RA and oddly, my PMR seems to remiss. PAIN in my shoulders, hips (bad), overall muscles, that horrible fatigue (to be fair, goes with RA though too). You would most def. know more than I do of course, BUT isn't PMR autoimmune & "inflammatory" related (so as my physician explained)? Yes, thus the steroids but biologics reduce inflammation. As my biologic works thus why I was even able to reduce steroids to a "maintenance dose/3mgs and counting". I am no doctor nor do I claim to be as such, nor did I study PMR enough to claim treatments... it's a hard diagnosis. I was also told it can go away (come back too) but is definitely inflammation related. Am I completely wrong?
You seem to understand it the wong way around - tocilizumab/Actemra is an IL-6 inhibitor, of course it will work for the PMR. It will only work for your RA if the underlying cause of your RA inflammation is IL-6. Biologics are very very specific, they work for one mechanism - if that is the one causing your problem, then that biologic will work very well. But you can't use two biologics at the same time. So you have been lucky that it works for your RA because it happens to be the same underlying cause as PMR and so both of them are improved.
In the case of GCA there are at least 2 other causes of the inflammation which the biologic doesn't work to control and so for half of patients with GCA they still require some pred for the inflammation due to those. It may turn out to be the same for PMR. there isn't enough data yet.
You have been able to reduce pred BECAUSE you happen to be on a biologic that reduces the amount of inflammation in the PMR so you don't need as much pred to manage it.
I feel blessed that Actemra does the "trick" for both my issues honestly, don't know which one of the two is worse...PMR or RA (it's a toss-up, they are both HORRIBLE). There are some others on this site who are also taking Actemra for maybe both conditions (RA and happen to have PMR), that are getting full relief so there is something to be said! Actemra isn't easily prescribed here in the US, I had to try many other drugs more commonly considered drugs before I was prescribed it. I'd like to know...how did you get your diagnosis? Honestly, after being diagnosed with RA and (I'd have to say years thereafter), PMR appeared. First, I was told I had Vasculitis, and then Chronic Fatigue Syndrome due to the "muscle aches", constant fatigue, and symmetrical pain (both shoulders, arms, hands, both hips). We do not have a "blood test" to prove it nor any actual "lab" test but I've had MRIs and Ultra-sounds and many, many labs (so many I've lost track now). Have you or is there another way you are diagnosed in the UK? I'd be interested to know and to also inform my physician as I honestly believe the UK is more advanced in certain treatments!
It is a clinical diagnosis mostly - based on symptoms and clinical history and by ruling out the other most likely underlying causes. PMR isn't the actual disease, it is the name given to a set of symptoms and there is a range of potential causes including the early signs of EORA, (elderly onset RA) and some cancers. Most of the rule-outs should be done in the context of blood tests. Nowadays PET-CT is very effective as a diagnostic tool - but expensive and not widely available as a result so often cancer cases are first in the queue.
Where I'd agree the UK - and even more so much of mainland Europe - is ahead is in their rheumatologists who are far better at diagnosis and management. US rheumies have some very strange and old-fashioned views. Possibly because they work outside the academic environment and don't keep as up-to-date about new thoughts and research.
Well, with any proper medical diagnosis (I believe)..symptoms, ruling out, testing, etc. so many illnesses can mimic others unless blood work is evident maybe. Took me over 3 years to be diagnosed with RA... which is CRAZY! With RA some can have the markers and some not vice versa. PMR (here) is relatively new (within the past 7 years maybe). In the past, it was diagnosed as Chronic Fatigue Syndrome.YES..." old-fashioned" is spot on and I find it especially true with the older, male Rheumatologists! You are correct, the younger ones are (seem) in the academic know (so to speak). I had to switch physicians within my "group" because I felt he was fluffing off my complaints and insulting me. He said I was suffering from "old lady syndrome" (I was 42) or "old age/menopausal" related. To be fair, yes, some (SOME) of the symptoms (milder, to not such extreme in most cases if not stressed or explained significant enough by the sufferer) could be diagnosed as such but not in a MALE patient who also has those same issues, so WRONG! I mentioned before, that we only have "2 Rheumatologists" (really it's 2 GROUPS of Specialists) in the WNY area (currently a nationwide shortage). In the US (at least in my area) patients are ALWAYS rushed out of the doctor's office so they can move on to the next patient (don't know if it's like that with you). Our doctors do not thoroughly explain treatments, seems they just give you the script, and off you go. You absolutely NEED to be your own advocate! Horrible if you are elderly and alone, completely in their hands. Our Pharmacists are more knowledgeable regarding the medications, treatments, and combinations of such.
BTW...sounds like you've been through quite a journey! Hopefully, you are "ok" now?
Not where I live - another socialised medicine country but with private options. A first appointment with a specialist is allocated an hour and follow-ups are shorter I think but I have yet to be rushed out. If something needs doing, it is done. It often results in you been late into the room but at the same time you know if one person gets that so will you if you need it. The long appointments also allow good doctors to slot in another patient as a double up. But our state employed doctors are paid a salary - they aren't a business looking to make a profit.
I suppose it depends what you mean by OK - I still have PMR, have had symptoms for 18 years and it hasn't ever really gone into remission that I could identify. Been better, been worse. I have done well on pred and have no identifiable problems as a result.
Also, if you do not mind my asking, what is your current diagnosis? What are you taking and is it helping?
PMR and pred. There are thoughts about adding tocilizumab if I pass the tests and funding is approved.
Thank you so much for sharing! I'm very pleased to hear you have done so well on pred. and have no problems, given that...why mess with something that is working for you? I sincerely feel for your suffering that long with PMR (thus the "pro", understandably) 18 years is a very long time to suffer from so much pain! God Bless and I hope you get whatever treatment you seek, VERY soon!
But I don't suffer "so much pain" as you put it. Used well and carefully pred manages the PMR inflammation and - as a result - the pain. If you have pain either you aren't on enough pred or it isn't "just" PMR.
I do have pain "occasionally" mostly due to damage done (wrists, back, knee). Surgery is not an option I'm told and I do NOT do well with it. I've had a few "simple clean-up type surgeries that nearly killed me with infections years ago. With my severe RA, surgery on my joints is NOT recommended (in my case). I end up WORSE (more arthritis, scar tissues, infections). I guess I just know that PMR (I can only compare to my own case) is very painful & I have RA so different case.Also, you mentioned adding "tocilizumab" which made me think you might be hurting if you are fine and in no pain, why would it be added that's all? Repectfully, it was only an option for me (USA) when other treatments were not working (BUT that is the USA and that was my case). I know since I started my own journey Actemra (after many drugs tried and failed) was a Godsend.. Either way, Peace & CHEERS to no pain! Enjoy and be so blessed!
You can always look a member's profile to find out about them - provided they have current information of course....which is why we ask it's kept updated...
I was diagnosed with PMR in Nov 2020 and Did not have stiffness even before starting prednisone. Never have experienced it just difficulty moving when PMR was out of control. My rheumatologist keeps asking about morning stiffness and diagnosed me with presumptive PMR. He says my disease could still turn out to be something else but prednisone stops all pain. He tests yearly for lupus, etc. but so far negative.
Hi, Darkchocolate1. Thank you for your reply. After this bunch of communications, I'm fairly well convinced that not everyone suffers with stiffness. I never have either. I just came under the impression that "everybody else" did have stiffness, and I started wondering if maybe I was dealing with something else. But I'm much more comfortable with the diagnosis (if not thrilled about it, that is!). And as it came up earlier, one person's perception of stiffness might be another person's perception of pain. In my case pain was definitely the game changer for me. Hope your journey runs smoothly.
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