Dr.: You don´t have PMR and PMR is not a disease in the muscles?!

[krillemy]

So I went to a new rheumatologist yesterday as my GP will not continue to treat me with pred. after the first rheumatologist said that I do not have PMR with normal blood tests, so I should be taken off the pred. that the GP put me on. The new rheumatologist said the same as the first one:I need to taper off pred. and get sick again, as they do not believe it is PMR when I have/had clean blood tests, and no signs of bursitis or synovitis in my joints (I had a PET-scan a year ago). I pointed out that PMR is the muscles, and he then said that it was an old fashion view, and that the word "polymyalgy" was misleading . PMR is NOT vascular either (also old fashion) - it is in the joints!! That is the new orange. This is apparently the consensus here in Denmark, so without elevated inflammatory markers OR synovitis there are no objective parameters to support the PMR diagnosis.

He also pointed out that PMR will NEVER give muscle atrophy even when left untreated for a long time - nor muscle twitches, so I should go back to the neurologists. I am speechless..... Has anyone heard of this before?

[PMRpro Ambassador]

I think it is they who are old-fashoned and I think I have yet to meet someone with PMR who doesn't complain of muscle pain and muscle stiffness. when not on enough pred.

rmdopen.bmj.com/content/4/1...

written in 2018, is from a group with one of the highly respected PMR experts in Europe

mayoclinic.org/diseases-con...

The Mayo seems quite happy to accept that it affects muscles.

academic.oup.com/rheumatolo...

comes from a set of the top names in the field - and they speak of large vessel (LV) inflammation. Vasculitis is the fancy word for inflamed blood vessels.

practicalpainmanagement.com...

is the oldest of the links - from 2017. Does he REALLY consider opinions from 2017 old-fashoned?

I don't know what to say. I get muscle twitches and had atrophy due to being on Medrol - has he considered that may your pred may be to blame there? Glad I don't live in Denmark!!!!!

[krillemy in reply to PMRpro]

Thank you. I will print and bring it to my GP. I am a scientist (cellbiology) myself, but it seems that the doctors live in a different planet... I wonder why they are SO afraid to prescribe this low dose, that I will try to taper. I know the risks, and it is my body?

[Hidden]

Hmmm. This is a Danish study that sees vasculitis related issues as one of the main factor to consider. I have read part of it....mainly because I am reading it on a phone. It also says crp/esr are "frequently" raised.... Indicating clearly that others times they aren't. From other articles we know its around 20% that don't have raised markers.

ncbi.nlm.nih.gov/pmc/articl...

[PMRpro Ambassador in reply to Hidden]

Good one!!! But 2017 is obviously too old-fashioned for this pair!

[Hidden in reply to PMRpro]

🤣🤣🤣

[krillemy in reply to Hidden]

Yes it is hilarious! We are 5.5 mill people, but no doctor dares to go against what the Rheumatology association here has decided to be the absolute truth

[miss-philosopher in reply to krillemy]

I also live in Denmark and I have newer been told the nonsence that you were told. (I have pmr and gca ) - I think you should ask for a new reumatologist. But I have noticed that the doctors here are very scared of Prednisolone. Were you in Rigshospitalet or Gentofte hospital ? Denmark is really a nice country to live in, and this idiot doctor should not make anyone belive different.

[krillemy in reply to miss-philosopher]

Ok Hope ahead. I have been referred to both Rigshospitalet/Glostrup and to Frederiksberg/Bispebjerg, however they have both refused to take me - due to no sign of inflammation i.e. SR/ESR. Can you recommend an outpatient rheumatologist here in DK, or were you referred by your GP to the hospital?

[miss-philosopher in reply to krillemy]

Yes I was referred by my GP to Gentofte hospital. Now Rigshospitalet. In Gentofte I met Anita Kincses. She treated me well . She has now her own Clinic in Holte. You could try her. holtegigtklinik.dk/?page_id=52

My crp was only 12 when I was diagnosed., and many newer has elevated crp. PMRpro has papers about that.

[Blearyeyed in reply to miss-philosopher]

Great helpful advice x

[krillemy in reply to miss-philosopher]

don´t know how to thank you, but thanks - I will contact her.

[miss-philosopher in reply to krillemy]

Your welcome. Glad if I could be of any help. Just write if I you want to ask me anything.

Stella.

[miss-philosopher in reply to miss-philosopher]

By the way, many of the so called reumatologist I have spoken to, I later found out wasnt but a trainee. So maybe 3 weeks in the reumatology dep. but still play know it all ....sigh !

[krillemy in reply to miss-philosopher]

Hi again. How where you then diagnosed?

[Margaret1951 in reply to krillemy]

I am lucky I don’t see the rheumatologist anymore as I don’t want to, last time she told me I don’t have to as nothing more she can do !!! 🤪🤪🤪 been better doing it on my own with help from all my friends on here.

[krillemy in reply to Margaret1951]

Who subscribes the steroids then?

[PMRpro Ambassador in reply to krillemy]

It is normal for the GP to provide the care and the prescriptions in the UK.

[Toobusyforthis in reply to Margaret1951]

Can you pay and go privately? Just fir a consultation? I did and I am getting somewhere now!

[PMRpro Ambassador in reply to Toobusyforthis]

This thread is a year old - just wondered if you had noticed?

[Toobusyforthis in reply to PMRpro]

I hadn’t ...no oops

[krillemy in reply to Toobusyforthis]

Yes I did go private, and they send me back to a reevaluation at the specialised hospital unit for autoimmune disease. Just started. MRI of thighs is normal. Normal CRP ect. They are looking at myositis, but no real signs confirm it. I am off any medication so not well - you?

[jinasc]

How near to Sweden are you?

[krillemy in reply to jinasc]

Copenhagen... I can drive over (yet)...

[Constance13 in reply to krillemy]

You may have to in the future. You poor thng!

[jinasc in reply to krillemy]

I have sent you a PM.

I love Copenhagen, one of the best two weeks I have had on holiday. You made me smile as I then re-called the 'Pink Elephants' ginned wider. Happy Memories.

[Rimmy]

Lately it seems doctors almost 'everywhere' are STILL getting it wrong .... and it is quite ridiculous that you should have to put up with all this nonsense. As PMRpro points out it is clearly THEY who are 'old-fashioned'.

[Constance13]

No!! I should think we are ALL speechless. Mind it's good to know that PMR is in the 'bones'.😬😬 Shows that we have all been wrong over the years !!

Wherever did these people study medicine??

[Constance13 in reply to Constance13]

Glad I don't live n Denmark!

[Margaret1951 in reply to Constance13]

In the dark ages I think 😂😂😂 we know more than them !!

[Daisyfield]

I have had normal bloods and BP etc throughout. I am 52. I had classic shoulder pain. Good response to treatment strongly confirmed PMR.

I understand it to be vasculitis hence why muscles and joints affected, esp shoulder joints due to inflammation causing impingement of blood supply to joint.

Hope you get the treatment you need

[krillemy]

Thank you, that fits with my knowledge.

[HeronNS]

Oh really? Odd that. I never felt the problem was in my bones. Throughout the year I thought the pain was just osteoarthritis getting worse I was puzzled why it didn't seem to be in my joints but, literally, pain all over (polymyalgia), as though I was cloaked in pain.

[twinkleyt]

My sister was diagnosed with PMR and treated with Pred by her GP, despite having normal blood test results 2 years ago. She is now on 2.5mg daily. Gp told her he was not a qualified Rheumy but had extensive exerience in PMR.

When I had, and is now worse, slipped discs pain, and thigh/groin pain I explained how my sister had PMR but I was told that I did not have it as bloodtest on the Sediment was normal.

Even having 33 daily radiotherapy sessions for cancer , I was the only one I met there that was not given Pred despite losing 10 kilos +. My muscle wastage was the most serious not fat.

It is not only a post code lottery but an individual Dr's lottery, I'm sorry to say.

[Margaret1951]

My muscles in my legs are slowly waisting away my physiotherapist told me, when I get out of bed in a morning I can see and feel the bone from hip to waist. but I am still smiling 🙂

[krillemy in reply to Margaret1951]

God to here some of you experience the same as the the other disease that gives wasting are more serious the PMR. I have put on weight (2,5 punds) since I started pred. some of it is definitely return of muscle as well as fat. Oddly my fat distribution also normalised within 2 weeks after starting pred. Before I had very thin arms and legs and no behind BUT a belly like a pregnant woman. Stomac fat redistrbuted to arms, leg and behind. I am happy about it - but it is strange.....

[Hidden]

Wow! I am gobsmacked.

[krillemy in reply to Hidden]

Yes They need to find objective, paraclinical measurable diagnostic criteria, so all are treated the same. Maybe they should go back to agree on the basic pathology of PMR: Is it vascular, muscles (type II fibers) or joints? Then what is consequential....

[PMRpro Ambassador in reply to krillemy]

Rheumatologists who participate in the OMERACT group are working on that - I participate in it. But it is a slow process - rheumies do appear to like disagreeing with each other and being picky!!

[krillemy in reply to PMRpro]

Very interesting! Are you there as a professional? It looks very promising, but it also looks like it is more for the purpose of "outcome" as in clinical trials? I guess that will still mean an agreement on inclusion/diagnostic criteria. What is the main opinion on the underlying pathology - vascular?

[PMRpro Ambassador in reply to krillemy]

It is for standardising clinical studies in general - but that makes any studies comparable which they tend not to be at present and there will be a set of qualification criteria - which tend to be what many doctors base THEIR ideas on. They aren't always all-encompassing unfortunately but the rheumies who participate in OMERACT do all seem to be much broader minded about symptoms/time on pred and so on. They are used to relating to patients as equals.

I work with the Leeds group as a patient research partner, OMERACT is the one group where patients' opinions at the meetings have equal weight to those of medics and at the meetings there are about 20 patients in a total of 200 participants which include not only rheumies but physiotherapists and other healthcare professionals.

I don't know anyone who thinks PMR and GCA are not due to an autoimmune vasculitis even if the details aren't known.

[krillemy]

the "overall opinion" I mean