My first post. I have update my profile with the history since first diagnosed in August 2021, I will try to avoid to much repetition.
In essence the Consultant says I do not have PMR as my Inflammation markers are within range. I am experiencing pain/stiffness in my shoulders throughout the day and especially at night. As recommended I am taking Ibuprofen/paracetamol to help with limited impact. Cortisol injections for shoulders in August. My knees are also stiff but free up with movement.
Homeopathic route not impacting at present after 3 months.
Consultant unable to offer explanation why I am still experiencing Inflammation/tendonitis in my shoulders or stiffness in my knees. Exercising and level of activity is decreasing at present due to the pain, for me who has always been active, played a sport to county level this is not good.
Any advice.
Thanks
Paul
Written by
Cube625
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Unfortunately you seem to have a Rheumy who bases too much emphasis on bloods and not symptoms… and is also so of the school that PMR shouldn’t last longer than around 2 years.
This is a comment from a study - [full study linked for info]
In a sizable proportion of PMR patients – from 7% to 22% – ESR is not raised at the time of diagnosis. However, in these patients, CRP is usually raised
As your initial levels were ESR - 34 [only just outside normal levels] CRP -22 would say you fall into that category.
The fact that an increase help somewhat in December last year indicates you had reduced too quickly - and PMR was still very much alive. Stopping Pred in February was bad advice from consultant…
Inflammations markers all the way through would have been within range because that’s what the job of the Pred is! .. so no point the consultant using that as a reason either.
Your GP [if same one who diagnosed you initially] seems to be the answer… can I ask why you were referred to Rheumy - sounds as if you would have been better sticking with GP.
Also agree with physio -,who seems to have a better understanding of PMR than Rheumy..
If you really do need to see a Rheumy then any way of being referred to different one in another hospital or see one privately - if you say roughly where you live we may be able to steer you in the right direction.
Hi DorsetLady thank you for your advice, I am in the New Forest area. Referred to Rheumatologist for specialist input after two years of struggling to reduce.
Recent CPR on 28.3.24 was 6, was 10 on 22.12.23 and ESR was 6 and 6 on the same dates.
Previous readings on average were 5 for CPR and 2 for ESR.
All options open including private with another consultant
As I said readings aren’t the be all and end all which some Rheumy seem to think… which is way we always say symptoms are the key.. and yours are very PMR ish.
Are you under Southampton?
Rod Hughes -based in Chertsey is our go to man in the south
Griggser saw him recently -see link -might be worth touching base with him and getting some feed back..
I am sorry to hear that you are having to go through this. I am no expert, except that I have had PMR for over 12 years and, until I found a good Rheumatologist, I was told many times that I didn't have PMR for various reasons.
It certainly sounds like PMR to me! And most of us have found that symptoms trump blood tests - my Rheumatologist never looks at blood test results. Since it looks like your PMR was probably the result of a Vaccine, you may have a less aggressive type which may burn out quicker, nevertheless you have significant symptoms which were relieved by the Pred. and have now returned without it.
I do think it is reprehensible that the drug that helped has been taken away from you and no alternatives have been offered.
Can your GP help at all, or maybe it is time for a second opinion from a rheumatologist?
Could well be - and the consultant's premise is built on shaky foundations. Normal range markers do happen in up to about 20% of patients and your markers were arguably out of range.
I would suggest a day trip to Chertsey and Rod Hughes. We suggest him because he isn't blinkered and listens to the patient.
My ESR has never been raised..Rheumy said it's not raised in up to 20% of sufferers. Go back and insist on Pred trial. I went from barely being able to crawl out of bed and unable to lift arms to working in my greenhouse 36hours after first dose.
I'm another, inflammatory markers have never been raised. I could have written what you have written, except my hip area is a lot worse than my shoulder area. I was told to come off the pred for similar reasons and it crippled me at the beginning of the year. It sounds like you would be better off going back to your GP. Good luck!
hi Gimme thank you for your reply and information, I have an appointment with the consultant next month and will be requesting other options to manage ththe inflammation based on the information have been receiving.
The fact that your symptoms are bilateral, and that they improved strongly and rapidly with steroids, suggests you have an autoimmune disorder. This is backed up by the fact your immune system was challenged just before the symptoms appeared.
The fact that your shoulders and hips are most affected (in the surrounding muscles, not the joints), your inflammatory markers were raised, and that 15mg/dy of prednisolone was enough to bring about almost complete remission, points towards PMR.
Unless your doctor has evidence pointing elsewhere, they seem to be wedded to the myth that PMR always disappears (and immune systems always return to normal) within 24 months. If they have hurried your taper, rather than track the improvement in symptoms, then that sounds like the problem; especially since the symptoms have now spread to the knees.
There are autoimmune neurological disorders that can mimic PMR, but you've mentioned nothing above, or in your profile, that would support that alternative possibility. In any case, rather than needing less immunosuppression, those diseases tend to need more.
You are going through exactly what I'm going through right now. PMR started December 2021 likely due to the vaccines. Never had very high markers, mostly the symptoms. Flared 3 times after attempts to get below 2mg. Doctors still keep questioning if I have PMR because I don't look typical. I am waiting on results of extensive bloodwork taken last week to check other Rheum diseases although we did this once or twice already (other doctors) except this time it's by a new Rheumy doctor and I think some are different tests. Right now I am learning again towards that this is still PMR but waiting to confirm.
hi there I saw in the thread your pmr may have been caused by a vaccine and I believe mine was the shingles vaccine that was the culprit. Although I did have Covid and flu jabs 2 weeks prior. Very wary now of having any other vaccines whilst having pmr. May I ask if yours was the shingles vaccine that may have caused this as I believe there is a link in their literature (the older 1 injection they are running down in UK and don’t now use in USA.)
There certainly was a warning in the older Zostavax information… but would say that your immune system was already under stress before you had a number of vaccines quite close together.
Any vaccine can trigger PMR, but the immune system needs to already be under pressure, and it’s usually the final straw.
Hi Pollyone the symptoms are started about 2 weeks after my 2nd Astrazeneca covid jab and steady deteriorated after that. I was certain at the time it had triggered the PMR symptoms. I have found some research which reports a few people having the same response after a covid vaccine. As DorsetLady says it has been known for years that any vaccine can trigger PMR. Although some in the medical profession appear to be denial regarding this?
I appreciate everyone's response to my post, very helpful. Thank you all.
Triggered - not caused. Something upsets the immune system - many things can do it over time and eventually something is the straw that breaks the camel's back and the genetic propensity kicks in and you develop something autoimmune - in our case the sysmptoms fit the PMR box. But if it hadn't been the vaccine - it might have been the disorder the vaccine was to protect you against. Or anything of a whole range of things, some you might be able to avoid, others you would struggle to.
I too have never had very raised blood markers and this last time not raised at all. I believe my flare was triggered by the Covid vaccine affecting my shoulders, upper arms , hips etc all bilateral and ‘magically’ disappeared within a day of taking pred 15 mg. However when I saw the Rheumy 9 months later she was not convinced it was PMR . Rather stupidly I continued to reduce to zero ( as on my initial flare, years previously I had managed to reduce off completely) I thought this would follow the same pattern, it didn’t and for 2 months on zero I struggled ( blood marker was within normal range) GP put me back on Pred and again within a day or two I could feel the improvement. I will be much more careful about tapering now, I have a rheumy appointment in August but I’m dreading them saying it’s not PMR because my symptoms are so much as people have described here and I cannot think what else it could be. The GP obviously thinks it is. This site has been a God send for help, advice, information etc. Following your question, it has also been helpful to me to see the advice offered. I too was quite active ( not quite at your level) and now feel I can enjoy my life again!
The bottom line is that you have a pred-responsive myalgia - whether she wants to call it PMR or not is her business but if it isn't, she had better find something else that manages the symptoms or admit she could be wrong!
PMRPro's sentence there is pretty much what I told my docs when they doubted the PMR.."whatever it is, I respond immediately to the Pred, so I obviously have a pred responsive myalgia". I had been checked for everything else, too, so they acquiesced.
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