On three occasions this year I have had flares following a reduction in pred.
Shoulder, neck & back pain returned. On each occasion I had a blood test & my PV levels were around 1.81, well above normal range. The PV test supported my symptoms.
Flare protocol was followed with Pred & after a few days all was ok. More blood tests followed & PV levels were back in range.
At back end of August this year, the same pain & stiffness returned in the same areas.
A further blood test followed & my PV levels showed within range. I carried on at 10mg a day....the pain & inflammation stayed the same & has done so until 2 weeks ago.
Following another check up with my GP, he questioned if the PMR had some how 'gone' and I have something else as the PV levels were in range?
Despite my protests, the GP decided to crash the pred from 10mg to 5mg a day for 2 weeks ' to see what happens'
I said this was not wise, however I was asked to give it a go.
In last 2 weeks my symptoms have slowly got worse to the point were pain is now in my sides & chest in the mornings as well.
Exactly as was, pre diagnoses over a year ago.
Yesterday I had more bloods done to check my PV levels and yet again they are within range.
I am due to see my GP again tomorrow & no doubt the PV levels will be used to support I do not have PMR any more.
Is that possible?...what can I do to challenge the likely outcome? I will be seeking a rheumy consultation after tomorrow but have read all the horror stories regarding them.
Is there a good one in the East Midlands?
I have classic PMR symptoms. I still have extreme fatigue & cognitive issues in waves everyday.
My symptoms do also fit with MS.
I'm pulling my hair out 🥺
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Naim1
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If the PV levels react the same as ESR and CRP [sorry not medically trained to be sure ] then they can very often lag behind the symptoms by many weeks.
And although I would say your PMR may not be as typical as others, doesn't mean it isn't that... and if it is after only a year I very much doubt it "gone". But you probably do need a new set of eyes to look at whole situation.
Sorry can't help on the Rheumy front, but other will I'm sure.
PV is a new field and only very small studies have looked at what happens to it in PMR. While in theory they should do the same as the ESR and CRP, in practice I'm pretty sure that the same caveats should apply and it is equally unreliable. For most patients with PMR, how their markers play is individual to them. One size really doesn't fit all - and managing PMR seems to be more a black art than a science!!!
If your symptoms also fit with MS - why has your GP not referred you long ago for clarification?
Can't help with a rheumy in the East Midlands either - but it is difficult to choose an NHS rheumy these days. They decide who will see you - if they will see you at all.
Up until last few weeks, GP ( and me) were more than happy it was PMR ( and I still am) Everything matches as does the fatigue & cognitive issues with the pred and the autoimmune disease....however, GP was using PV levels as the icing on the mouldy cake to support PMR decision.
After the last but one 'within range' test the GP thought I may have something else on top of PMR. Fibro was suspected but my symptoms do not match.
The latest decision to crash the pred & measure PV levels were to see what happens prior to referral to a consultant.
I have researched MS and the symptoms of extreme fatigue & cognative issues coming in waves match.
I seem to be a football being kicked between my GP & my employers OH Dr.....both asking " How are you?" But then question the judgement of each other when I reply " lousy no better"😖
MS does need to be ruled out. But if you can manage the symptoms well with pred, it is a bit silly to force you off it unless it is obvious there is another answer, In the early stages, PMR and LORA (late onset RA) can present identically, it is impossible for even a rheumy to tell the difference, One option might be a PET-CT scan to see the sites of inflammation - and fibro IS NOT an inflammatory disorder. If slightly more pred relieves symptoms - then it is VERY unlikely to be fibro. My argument is that they can do zilch about fibro, if the right dose of pred sorts most of your symptoms, take it and run. Unfortunately, some are so scared of pred, the patient's needs fade into the background.
I'd like to try going back up to 15mg for a week to see what happens ( what's the worst than happen?) as well as looking at other things like MS or even ME / CFS?
Tomorrow will be interesting.
I feel happy now explaining to the GP that PV levels are not always an indicator of PMR's presence.
What's the worst that can happen? Not a lot judging by my experience!!! I've been on pred for 16 years, about 10 years of that on above 10mg, above 15mg for at least 4 of them. As I said to the Pain Clinic doc this afternoon - would you know I was a long term steroid patient? She agreed she wouldn't. There are people it does all sorts to over time but it isn't everyone. And having had 5 years of unmanaged PMR - I think pred has done less to me than PMR!!! It also has given me a far preferable quality of life. So a couple of months more 15mg is pretty minimal in the great scheme of things!
The fatigue and cognitive issues are frequently part of PMR/GCA. But too many GPs (and rheumies come to that) think that once you are on pred everything is back to normal. The pred has cured NOTHING, it is a management strategy for the inflammations and symptoms. The real disease process underlying it all is still active in the background, unseen but definitely NOT unfelt. It attacks the body as if it were a flu. Or Covid. They can do the same. But PMR goes on and on - you fight off a virus sooner or later. But PMR has an indefinite duration.
I suspect some of them didn't really assimilate their preclinical lectures as well as they might have - physiology and pharmacology in particular. If you don't fully understand the normal, you can't fully understand what might happen in pathology. They know facts they think important and were examined on, but they have lost the curiousity and ability to think laterally and ask WHY.
Hello Naim..personally, I would do it, I took between 35 and even 40 a few times when sorting things out and was on a cruise ship..same thing I figured "well, it's not gonna kill me, and I need to see if it works, so I am trying it"..and I did get better..now down to 13 mg (again lol)
Tony your GP that you want a Flurodeoxyglucose PET/CT scan. In a recent article (I think it the frequently answered questions in this helpful forum), it is recognised as the gold standard for diagnosis. Here is the link: academic.oup.com/rheumap/ar...
You might and paste it into your browser, if it doesn’t work by clicking on it. All the best.
Note - you will probably have to reduce your pred dose considerably before a PET-CT as it interferes with the result. Opinions vary and some doctors claim it isn't necessary but I have grave doubts that it is accurate even at 5mg pred.
Well, just got back from GP and another miserable experience.
Despite passing on all the advice regarding PV levels, delayed blood readings and asking for another flare protocol to kick in, it all fell on deaf ears.
" Don't want you on steroids if steroids are not helping....if it is PMR then your PV levels would be elevated & they are not so an increase in steroids is not the answer"
FOR THE LOVE OF GOD!!!!!!
Off the cuff resolution...
" Lets try you on pain patches"
Me: NO....LETS NOT!
How the hell is that going to help & how is that a resolution & how is that going to resolve the extreme fatigue & cognitive issues????.
🤬🤬🤬🤬🤬🤬🤬
Conclusion?.... GP is going to consult with peers & a rheumy.
So now worse than back to square one...when this kicked off one year ago...was in agony but no fatigue & cognitive issues...1 year later...now have both.
No shooting! But maybe a concerted effect to find a sensible Rheumy… any chance of travelling further afield as a one-off to our go-to man in Chertsey, Surrey.
Saw Proffesor Hughes and had a very construction meeting.
Confirmed it IS ....PMR.
Blood tests for inflammation ARE unreliable and should not be used in isolation.
Face rash IS from the Pred.
My Pred levels WERE messed about with too much....(now back up to 15mg from 5mg & within 36 hours feeling much better 👍)...and as always known....need a slow slow reduction.
My extreme fatigue & cognitive issues may be down to either 1) Antidepressant medication ( advised to stop them & see how things are in 6 weeks) or / and 2) ME/CFS....which may have been an immune response to the PMR.
Such a relief to be listened to & understood by a top top gentleman.
Thank you so much for putting me in the Prof's direction.
I'm sure his report will help my GP who has tried his best...done many good things....and some not so good things....Prof Rod has validated many things.
He is the sort of chap you could happily spend a night in the pub with and pick his brains.
It is possible that this GP MIGHT get his act together IF he is asking a rheumy - because proper diagnosis is what is required - not this GP game they seem to love to play with pain relief of various sorts. They keep trying things - or not.
piglette and I have talked about this before, tonight I was watching The Bad SKin Clinic and I'm sure they chose the patients on the basis of utterly useless GP and specialist reactions! "No-one would operate as it might affect the nerves to your eye" - half an hour later, superficial lipoma gone and eye working fine. A total misdiagnosis of a venous ulcer and rosacea that was causing severe mental health problems - both improved with correct care. The amount of money poured down the drain and lives put on hold ...
Indeed....through out my journey the only folk I trust are those on this site.
Up until the most recent flares & normal PV levels, the GP was more than happy that it IS ....PMR
Despite passing on ' don't just rely on bloods look at my symptoms over the last 12+ months'.....suddenly PV levels are the indicator...and not my symotoms.
I'm relieved I can now try & progress with a reputable consultant & try once & for all to pin a flag to what is going on, then shove it down the throats of those that won't listen.
I'm astounded that so called professionals spend most of their time telling you what you have but then spin in a heartbeat & put their energy into telling you it is anything BUT what they say you have!🤪🤪🤪🤪🤪
It does seem to happen rather a lot! As piglette says, a high proportion of GP PMR diagnoses are wrong - either PMR diagnosed when it isn't or not diagnosed when it is. The trouble is, there is no definitive test and I keep telling them, it isn't a new drug you need above all, it is to know that this IS PMRGCA spectrum disease and only then can you properly identify the best way to manage it, Please don't tell me it is PMR and a year or two later decide it isn't any more - even though pred still works if you are on the right dose. This belief that somehow PMR magically "switches off" after 2 years and if it doesn't it can't be PMR is so silly.
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PMR flare or something else?
Reducing - too fast ???
What’s my diagnosis?
Symptoms reduced but ESR/CRP unchanged 
