Is it possible to have a relatively mild case of pmr? Some years ago I had PMR and was on prednisone for two years. I now have some of the symptoms but I don’t know whether it’s a mild case of PMR or a bad case of osteo arthritis. My PMR started in the hips and then spread to the shoulders. My present symptoms are mainly in the hips.
PMR or Arthritis : Is it possible to have a... - PMRGCAuk
PMR or Arthritis
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Crowsfeet
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I imagine it comes in all levels and versions - I am quite sure there are at least 4 or 5 different versions, varying in presentation in various ways. And a few rheumies are coming round the same concept as a result of the ongoing research, especially in the UK. But hip pain can be due to various things - although a lot of them might be unusual if they were both sides almost the same whereas PMR does tend to bilateral.
Sorry could you clarify for me please. Are you saying the different forms of arthritis are not usually bilateral but PMR is usually bilateral. Also at the time I was diagnosed with PMR the diagnosis was due to all my pain disappearing within 24 hours of taking a large dose of prednisone. Can I do that again? And if the pain does not disappear do I have to taper off the prednisone or just not take any more.
Not necessarily arthritis - there are other things that cause hip pain. Some x-rays would be a good start.
How big a dose of pred? PMR typically responds to 15-20mg, maybe 25mg, but if the doctor uses more than that it may cloud the view - other things respond to large doses of pred.
You can take pred for sa few weeks and stop if it is tapered properly - I had 6 weeks of pred, 2 weeks each of 15, 10 and 5mg and stop.
I have had OA for many years and for over a year I (and, unfortunately, my doctor at the time) believed my increasing pain was due to worsening OA. A new doctor heard my symptoms, which by then had practically crippled me, ran all the tests again (bad doctor had said everything okay, in fact I had moderately raised inflammation markers and very low iron) and nothing else showing up tried me on on a moderate (not a large) dose of prednisone, 15 mg. Miracle. This was in June, 2015. I am still on pred although for most of the past three years it has been at or around 2 mg.I think you could try the pred test, if you can get some pred, especially as it worked so well for you the first time. But too large a dose will mask nearly everything, including osteoarthritis. Even the 15 mg made my OA aches and pains go away although they gradually returned as I reduced my dose.
Hi CrowsfeetYou wrote this 4 months ago so I'm thinking you might have sorted it out by now? I'm in a similar situation....had PMR several years ago, was tapering pred really slowly and stopped completely around 5 years ago.
Now in the last year I've had shoulder, neck stiffness and discomfort since last June ( ultrasound scan has shown 2 tears in tendons on left shoulder and 1 on right shoulder).
Since February I've started developing more musculoskeletal problems, right forearm, now left wrist has started a bit, knees ( although I have a little OA there), hips recently started up, sometimes my mid back ( thoracic?)hurts. Seeing Rheumatologist again end of April. She's wondering about seronegative inflammatory arthritis as my inflammation markers are slightly up, ESR 32 CRP 3.5. None of the areas are as painful as with PMR but it is definitely incapacitating.
Have you worked out what's going on with you?
PMRpro, any new ideas on my situation?
Beevbops
I'd think PMR had to be higher on the list than an inflammatory arthritis - sounds much more musculo than skeletal ...
Thanks PMRpro. I'd really appreciate your thoughts on my condition in general. My back is enormously better this morning... after a month of discomfort and stiffness and basically getting worse, it's virtually gone today. Phew! However, my right forearm/ wrist still sore when I twist it especially the first movement of the morning in bed. Rheumy pushed at it in various ways but elicited no pain. When I tried to pick up my son's puppy the other day, taking weight on that hand and wrist, it REALLY hurt ( I know...silly thing to do!). My left wrist is occasionally now also tweaky but less so. My right hip is not right when I walk ( not sure about left). The big thing though is that I'm NOT stiff first thing in the mornings. Surely that points to a non inflammatory condition? So, why is my ESR raised? ( 32) and CRP, which is usually around 2.5 with me, is at 3.5?
As I mentioned before, they found tendon tears in my shoulders at the ultrasound scan.
I do wonder if I've got a number of totally separate things going on!
Thanks as usual
Beevbops
It is possible of course - but there is something inflammatory going on somewhere if the markers are raised. I had what I thought was RSI = repetitive strain injury - in the forearm long before morning stiffness appeared and the right was noticeably worse than the left at first. Lifting a kettle was not a pleasant experience! The tears are possibly associated with the raised CRP/ESR but that doesn't mean there isn't something else happening.
Apart from the shoulder pain - they were stiff, not painful - what you are describing is very like I was in the year before PMR appeared in a recognisable form (not that anyone recognised it at the time!)
So was your wrist issue actually part of the PMR? I didn't realise it could be? Rheumy did various pulling, pushing things to my shoulders and ended up saying I'd have more pain in shoulders when she did that if it was PMR.
I've been thinking exactly that ( what you said about your symptoms) about my right forearm. I'd been using an iQoro device ( therapy for lower oesophageal sphinctre) which involves putting a thing like a gumshield between teeth and lips and pulling...... hence repetitive strain thoughts. Now left wrist a bit tweaky, but I did start using my left hand to pull when the right one started hurting. So some kind of tendinopathy in shoulders and forearm/ wrists, maybe a spot of bursitis in right hip? OA flare in knees?? When I had PMR before, my shoulders, neck, hip girdle were stiff and sore when moving but not when sitting in a chair not moving.. except my neck did hurt when still.
I just don't want to find I'm diagnosed with RA...just because I involved a Rheumatologist!! There's been no imaging other than my shoulders.
Beevbops
Yes - tendonitis. PMR causes inflammation of the soft tissues surrounding the joints. She obviously doesn't really know a lot about PMR - not all patients have shoulder involvement anyway but many find their shoulders are stiff and it is muscle pain that stops movement but the shoulder joint itself doesn't hurt - mine didn't and doesn't. If you have shoulder tendon tears that would hurt. I get pain in the bicep attachments, just at the bottom of the shoulder bulge above the bicep. That is due to myofascial pain "stickiness" according to my physio who does manual mobilisation of it which hurts afterwards, like bruising, but then makes it so much better.
They seem to have such blinkered ideas of what PMR does to you.
Although I have tears in shoulder tendons, I don't think I have as much pain on movement as I did before with PMR ( might have forgotten). I never had aching when static. My knees can't be PMR, can they? What I don't understand and no doctor seems to be able to explain, is why all this started last summer with collarbone pain, both sides, when crossing arms in front, pulling t-shirt up and off. I'm really worried about her getting stuck in a train of thought and giving me the wrong diagnosis.
She was recommended by someone on here... I think for PMR and GCA.
Beevbops
My knees hurt originally with PMR - a rheumy said it was OA, she "could feel it". Nothing to be seen on x-ray some 13 years later when I had a recurrence of the pain and the GP decided she should get an x-ray just in case.
I do have a little OA in knees, diagnosed a few years ago in X-ray by orthopaedic consultant. Problems I was having at the time stopped abruptly when I stopped that statin. Since then the issue hasn't caused any pain or stiffness.... until now.
So it isn't necessarily a possible second lot of PMR if the first lot was due to statins - very common really. I think I see why she's looking for other options than PMR - but it doesn't mean it isn't ...
No, the first lot of PMR back in 2010 wasn't due to statins. I wasn't taking them then. I meat when I was diagnosed with the beginnings of OA in my knees and I was struggling to get up the stairs, it was the statin causing the muscle problems in my thighs, not the OA.
Statin? How long ago were you taking statins?
Hosers2, I still am taking 5mg rosuvastatin but back then was on Atorvastatin.
Six years ago, I had the same symptoms as those of PMR. I had taken Simvastatin for three years, and my symptoms progressively grew worse. When I quit taking statins every symptom disappeared (within 30 days).
Gosh! Well, because of what happened with my knees, thighs while on Atorvastatin ( I stopped and pain and stiffness was gone completely after 2 or 3 days), I did stop my statin this time for about a week, just to see, but there was no change. Should I have stopped it for longer?? Also, I was waiting for my shoulder problems to go but a scan has shown tendon tears, so that could be just a rotator cuff problem. The other symptoms have been since February.
My original doctor, who insisted on my taking Simvastatin (for 3 years), failed to tell me to take CoQ10 as well. I didn’t find out about CoQ10 until I investigated all of my medications (while I was trying to find out what was causing my problems).Over the three year period I took Simvastatin, I developed “rotator cuff” problems in my right shoulder. The specialists recommended surgery. But then my left shoulder began with the same problem and the right shoulder aches eased up. Again, repair surgery was recommended. Then my hips started aching, and by the end of the third year, I was a prospect for hip replacement surgery. In the meantime, I would wake up, feeling like someone had hammered my wrists, and I couldn’t close my fingers, or grip anything. (Carpal Tunnel surgery recommended). And I needed help getting up off of the ground.
After my prescription investigations (online), I found many others experiencing the same problems. All of them had been on statins long term.
So I quit taking them. 30 days later, there were no signs of any problems. I did start taking CoQ10, which I believe helped me recover.
I am nota doctor, nor do I have any medical qualifications to suggest a remedy to your problem. (Nor does anyone else commenting on Healthunlocked). This was my experience with statins.
I should tell you that, five years later, every symptom reappeared suddenly one morning. PMR was diagnosed eight weeks after that.
There is no reliable evidence that CoQ10 makes a difference - the studies that have been done give conflicting results.
health.harvard.edu/heart-he...
"MYTH 3 Taking CoQ10 prevents muscle aches caused by statins.
Coenzyme Q10 (CoQ10) is a vitamin-like substance made naturally by the body that is involved in energy production in all your cells. It's also sold as a dietary supplement and touted as a way to boost energy and "support heart function," as the product labels assert. Taking a statin lowers CoQ10 levels, and scientists have wondered if raising blood levels of CoQ10 might help treat statin-related muscle aches. But so far, the results have been mixed, with no solid evidence to support that idea.
Some physicians maintain that trying the supplements for a month or so is likely safe. However, research suggests that CoQ10 may reduce the effectiveness of warfarin (Coumadin). That could raise the risk of a dangerous blood clot, so don't try CoQ10 if you are taking that medication."
Like all supplements - there are contraindications to using it and you should not simply tell people that "you should take ..."
“. . . . .and you should not simply tell people that ‘you should take...”
PMRpro. Excuse me? Nowhere in my comment to Beevhops did I make that statement. This is what I did write:
“I am not a doctor, nor do I have any medical qualifications to suggest a remedy to your problem. (Nor does anyone else commenting on Healthunlocked). This was my experience with statins.”.
"My original doctor, who insisted on my taking Simvastatin (for 3 years), failed to tell me to take CoQ10 as well."
insinuates that it was a fault on the part of your doctor not to tell you to take it. I'm sorry if my use of the word "you" made you feel attacked - but your doctor was not at fault either,
Thankyou for all that Hosers2. Sorry for late reply. A locum GP who was on statins himself once told me that he takes CoQ10 and he feels it helps. They never do big research about things unless big pharma are involved to fund it I feel. I do wonder if I should maybe try a longer break from my statin...just 5mg rosuvastatin as I had reactions to the 2 previous.
My body seems to be galloping towards decrepitude at the moment so I really don't know what's going on. I'm still waiting on a couple of blood test results but everything has been negative so far, apart from ESR 32 and CRP 3.5.
My wrists have started going into spasmy aches this morning even when static. I never had wrists involved in my PMR when I had it but some people on here do have wrist involvement. Also I'm bothered by my back, low and middle. Seeing Rheumatologist again on 29th.....
Many thanks for your interest and help
Beevbops
Hi all and PMRproI've just seen the Rheumatologist in Bath again following all the results being finally back!
Loads of rheumatoid tests done, all negative. Only abnormal result is ESR which is now 43, having been 32 a few weeks before ( although different labs).
As I said before ultrasound showed 2 tendon tears in left shoulder and 1 in right.
We discussed the possibility of some possible reactive arthritis after Covid jab mid February as all symptoms apart from shoulders started late February. Other symptoms are wrists, knees, low back, thighs, possibly hips.
She's thinking possibly a seronegative inflammatory arthritis ( not rheumatoid as no small joints like fingers involved).
I'm getting an MRI of lumbar spine then seeing her again. She's talking about possibly Sulfasalazine with either nsaids or pred initially until it kicks in. Told me to take ibuprofen regularly apart from near MRI to see how effective it is.
Any thoughts please?
I'm feeling generally more incapacitated than I was a few weeks ago.
Many thanks
Beevbops
I was offered sulphasalazine by a rheumy who didn't want to diagnose PMR - luckily I was about to move and he couldn't start it as it needed specialist supervision. Presumably she won't start anything until the MRI is done - but do be careful with whatever NSAID you choose. One PMR friend ended up in A&E with a gastric bleed after taking 3 doses of ibuprofen!
Be interesting to see how it would respond to pred though. I'm surprised at the idea that an inflammatory arthritis would progress so fast.
So does inflammatory arthritis start more slowly than PMR? I'm thinking, if it's PMR, it won't respond to Sulphasalazine? No, she won't start anything till MRI is done. She said to start taking ibuprofen regularly now but stop 5 days before the MRI. I've taken it a few times before but never regularly. I'll watch for symptoms. The confusion is that I've got what she called long term tendon tears in rotator cuff both sides. And my hips don't hurt when she manipulates them. The shoulder problems started last May but all the rest since February, post vaccine...so she felt it could be a reactive arthritis. I'm thinking even if the shoulders had this long standing injury, an inflammatory arthritis or any inflammatory condition would likely make them feel worse?
I don't think knees and wrists involvement does rule out PMR though, does it?
I don't know - I would have thought so but on reflection, reactive arthritis probably does start suddenly. There are people whose PMR may have appeared post vaccine, others who have had flares - I have sort of. And there is absolutely no reason why not, it is poking the immune system like anything else. I have had knee and wrist problems with PMR, my wrists are the real flag for me. hands and wrists always protest if I flare.
It's all NSAIDs really - maybe take some stomach protection? Pepcid is the new Zantac (ranitidine was withdrawn so almost impossible to get). But always take it with food.
I've taken Omeprazole for years since before PMR. In fact, after reading stuff about microbiome etc, I'm inclined to think it might be at the root of my problems...but haven't been able to stop especially as respiratory consultant thought stomach acid might well be the cause of my very mild bronchiectasis. Now I've woken up this morning, after a bad day yesterday, but took paracetamol at bedtime, and this morning I've got a few tweaks in shoulders and wrists, slight awareness of knees....but that's it! So that doesn't feel like PMR or inflammatory arthritis!! 🤔
You're OK then - don't over do the paracetamol, 3g should be the max per day at our age, even if it does say 4g. COULD be inflammatory arthritis - sure she'll make up her mind ...
Hello again
Well, I might have already said this but I'm now waiting for an MRI of my lumbar spine and sacro-iliac joints. My Rheumatologist thinks it might be a spondyloarthritis. My ESR has gone from 32 to 43 in a few weeks, although from different labs so I don't know if that could affect the results?
As I've been reading up on axial spondyloarthritis and the others under this umbrella, I've recalled something about my dad's symptoms of his so-called PMR ( diagnosed by GP- he never saw a Rheumatologist). Firstly, before he was diagnosed, he couldn't sit comfortable on a dining chair, kept getting up and pacing the room ( doesn't sound like my memory of PMR?). Also, he never managed to get below 5mg Pred and when he tried, his wrists hurt. Now, I've read that axial spondyloarthritis can cause pain on sitting ......and that it has a strong genetic component. However, I'm not getting pain on sitting or lying and it doesn't wake me in the night with pain in my back.
I know this is a forum for PMR...but I'm still wondering about that as I think several of you have knee stiffness, pain as well as wrist involvement. So I'd appreciate any thoughts.
Another thing, she has told me to take ibuprofen regularly until she sees me again, apart from the 5 days before the MRI. It's making a big difference to my mobility and soreness, stiffness. I really am not getting morning stiffness, just slight awareness of my mid back, slightly sore upper arms, knees fine, slight awareness of hips. I'm thinking an NSAID is unlikely to have that much effect on PMR??
Thanks again everyone
Beevbops
Oh and what other nsaid can I buy other than ibuprofen? I've got a packet of ibuprofen express liquid capsules.
It sounds possible - it is something I mention quite often. And the fact NSAIDs help does support the idea the concept might be right. There are several spondyloarthropathies and they can present looking like PMR. Often Naproxen is used in them - it is also OTC at lower doses I think. Ask the pharmacist for advice. What's the matter with ibuprofen?
Hi PMRpro
Thankyou for your reply. Have you seen the other reply I just sent a few minutes ago?
I've been taking Ibuprofen but was just wondering about the pros and cons of other NSAIDs.
As it happens, Rheumy has said she might change it to Naproxen. I've discovered by looking it up that I think Naproxen causes less cardiovascular risk than Ibuprofen and is also more anti-inflammatory? So that could be why she is thinking of it. She's also been thinking about Pred and/or Sulfasalazine.
Is spondyloarthritis inflammatory or auto-immune? I think PMR is inflammatory??
Beevbops
Whoops, after reading your eply again, I think you are replying to my second reply! Sorry!
I was replying to both - didn't think you wanted an epistle really - it all sounds quite logical 
Naproxen claims to be better, I suspect it is more "less worse" and the difference isn't major. It's what works best for you that matters.
PMR is inflammatory and almost certainly autoimmune - they haven't identified antibodies but they have fond some in GCA. So are the spondyloarthropathies - just a whole range of inflammatory arthritides with slightly different features on an almost common basis and a genetic component
verywellhealth.com/spondylo....
webmd.com/arthritis/types-o...
Hi all, PMR Pro
Just to update you following my investigations etc.. My Rheumatologist at the Bath clinic has diagnosed me with seronegative inflammatory arthritis. She said there's not enough radiographic evidence to call it spondyloarthritis.
My MRI of lumbar spine and sacro iliac joints showed numerous areas of degenerative change ( to be expected at my age?) and some inflammation around left si joint which could be osteoarthritis or inflammatory arthritis.
Now I know this is a PMR forum but I wondered if PMR Pro or others could explain to me the difference between seronegative inflammatory arthritis and spondyloarthritis? I've read there is a non radiographic axial spondyloarthritis.....so I'm confused. I do have my worst symptoms in my back and predominantly now around the right si joint ( clicking and pain when walking) despite the 750mg of Naproxen I'm now on. All other symptoms seem to be relieved by that dose.
Any help would be appreciated.
Many thanks
Beevbops
Sero negative inflammatory arthritis is a general term - like "Dog" - and includes any form of inflammatory arthritis that doesn't have markers in this particular patient.
Spondyloarthropathy narrows it to a family - like "Spaniel". And then within that there are specific versions that differ in effects, symptoms and outcomes.
uofmhealth.org/health-libra...
Does that help? If not, say so and I'll look for more later but I need to go out just now.
By the way - we won't chuck you out Some of the aspects of living with any of them are the same.
PMRpro
Thanks for that. My problem is that whenever I try to research seronegative inflammatory arthritis, it gives me spondyloarthritis. So I'm thinking it's synonymous. She said it often follows on after PMR by the way.
Also, I thought diagnoses paid attention to symptoms as well as radiographic evidence?
I know people with spondyloarthritis often take years to get the correct diagnosis. It's only frustrating me in so far as the diagnosis of "dog" might not allow me to access the physio type treatment I need. Quite fancy the idea of being a spaniel! 😊
I've read that with spondyloarthritis, getting a personal assessment from a specialist rheumatology physio is an essential part of the treatment. And with 750mg Naproxen, it's still pain and clicking around the si joint that's prominent so that suggests to me that it's a spondyloarthritis.
She's planning to start me on Sulfasalazine at my next appointment in mid July. I'm wondering if she's one of these rather intransigeant pedantic Rheumatologists I read about on here!
Thanks again and for not booting me off here! 😂
Beevbops
The idiot rheumy I saw wanted to use sulphasalazine but couldn't because I hadn't got a specialist here where I was moving to some months later. Idiot because he had a fixed idea and didn't ask or listen to me because what I was experiencing and what he decided I was experiencing wasn't the same! One of those GP letters that wasn't about the consultation I was at!!! It isn't uncommon for a late onset spondyloarthropathy not to show back pain for a long time - it's probably the main reason why it is missed, especially in a patients with a PMR-like presentation. I don't think it "follows on PMR" - I think it was often the wrong diagnosis in the first place - which of course is one of the primary problems we experience.
One friend was told by Prof Dasgupta she'd had GCA - it turned out to be a spondyloarthropathy that was affecting the blood flow in the neck - and that caused the GCA-type symptoms which included tongue claudication and even big black necrotic patches on the underside of the tongue. She happened to mention night time back pain to Sarah Mackie - whose spidey sense made her do different imaging.
I sent my Rheumatologist an email asking if I had a spondyloarthritis, highlighting the degree of si pain I was now experiencing and got an extremely terse reply, saying basically she'd already told me my diagnosis! Clearly I question too much which is annoying her.
I'll have to wait till face to face in July. I've read also that women often don't have radiographic evidence of spondyloarthritis.
After being told by my local hospital that they don't have a Rheumatology physio because she's just retired, out of the blue I've now got a phone call with her this afternoon as she's doing bank work for them until they appoint her replacement.
So I hope I can persuade her to get an assessment as I see that as crucial. I hear she's very experienced so I bet she will shed more light on my diagnosis!
Thanks for your help
Beevbops
My LDL cholesterol levels fluctuated between 235 and 240 the three years I took statins. (2013-2015). They still remain “high”. But now I read different opinions from the medical community that statins might be good for seniors.
Contrary to PMRpro’s own personal “medical” opinion, many doctors do recommend taking CoQ10 in conjunction with statins. But again, you should research that on your own, and not rely on either one of us. Just google “Statins and CoQ10”. There are many articles about the subject.
I can tell you that both my parents had the same LDL numbers that I have. And both lived well into their 90’s (without statin drugs). My 45 year old daughter, who does IronMan marathons, has a body weight index of 3, and an LDL of 235. My family may just be tolerant to a high cholesterol level.
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