Hi went to see a rheumatologist today and got a young arrogant arse who totally dismissed that I had either PMR or giant cell as I’m too young and my markers are normal and basically told me to start getting down the prednisolone as it’s masking everything and they do not know what I have but definitely not giant cell . I was so angry and frustrated I could cry I honestly I feel I’m getting nowhere , so I said and if I do lose my eyesight who’s fault is that going to be then when I drop down and ignore the symptoms basically.
My husband got so angry with him and asked him what he thought it was then and he said don’t know and welcome to rheumatologi .
So his advice is to come down from 30 to 20 to 171/2 and so on till we get see what happens .
any advice would be appreciated x
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Eek! And a young one too. Well, even if he’s right, would it hurt him too much to deliver his ‘news’ backed up with reasoning which is also backed up with the latest research in view of your concern? Was this a consultant or a registrar on rotation? Like (bad?) jokes, it’s the way you tell ‘em that makes such a difference. Yes, Pred might be masking something else, but at least he could have acknowledged your fears and tried to give you a bit more to reassure you that he was using best practice. The welcome to rheumatology comment as a rebuff isn’t helping anything. Currently how are things in the head department?
Hi he was a early 30ish consultant , we asked him why then did the last rheumatologist put me up to 30 mg because she suspected giant cell and he said we all have different opinions. My husband said to him but the bloods are not going to be high if the prednisolone is so high right he said yes .
The only thing I can do now is come down and see how I feel .
Since i went up to 30 I haven’t felt jaw pain or head pain I will drop to 20 mg tomorrow and we shall see .
I know I said that to him it’s not your eyesight I’m the one living with this and taking the risk if it was just pain I had to deal with that’s fine but not my eyesight .
Well of course your markers are normal - you are on a fairly high dose of pred and anyway up to 20% of cases don't have raised markers. And the guidelines for GCA say "over 50" - but that doesn't mean you HAVE to be over 50 either.
Complaint time - just for rudeness and poor patient communication.
Hi I know but they don’t seem to want to listen to you as a patient I know I’m not the classic but you don’t just wake up and not be able to lift your arms or make a bed for nothing , I told him I think it took a turn more worse after my first vaccine then he wrote that down .I’m going to tell my doctor he told me not to listen to him 🤦♀️
As someone else said, it's the way you tell them that counts, and that goes for patient and medic too. When I first started with PMR I was actually screaming when pulling knickers up after going to the loo, let alone getting dressed. You have to emphasise these things for them to really take them in.
He also said we could try methotrexate to wean you off the prednisolone and I said no way without a proper diagnosis am I starting another drug , awful 😢
I think because I took neuralgia in 2014 he thinks it’s that I told him it feels completely different the jaw pain is sore and tired you couldn’t ask me to have a sweet when it’s that sore and the side of the head feels like someone is pulling on it like a elastic band it’s not right .
Sorry misunderstood you - thought he was feeling heads for lumps etc - I had the usual tender scalp, jaw claudication & head pain like two tight metal bands from nape of neck upover head and vertically down through eye sockets.
Have to say, yours sounds suspiciously like GCA to me!
Yes I’m going to keep track of the pain as I’m reducing, my friend who is a gp said next time I get he pain when reducing go straight to AE and not to rheumatologist, maybe that’s the way to go now .
I went to A&E after GP just said take paracetamol for 2 weeks. I said I was sure it was pmr as my friend had it, only I was much worse. A&E were marvellous. I had full bloods, Xrays and I was constantly asked if I had jaw pain etc. Stayed there all day on a ward and then then pmr was confirmed and I was put on 30mg.So go to A&E would be my advice and lay it on thick.
I had a similar experience late last year. I did complain and was subsequently seen by head of dept who was / is so lovely, understanding , informed and sympathetic. Best wishes
Have had arrogant and ignorant Rheumies, awful and frustrating....now in same hospital have a lovely Rheumatologist, listens, discusses and we decide together the next thing to do, regards steroids, tests etc.....there are known good Rheumies, I think there should be known useless Rheumies to us too....a secret list maybe!..😉.....
Do not go back to him, look up who else is available in hospitals near you....Good luck, keep us posted....
That’s all you want is someone who is going to be understanding and try and get to a proper diagnosis and plan , I was on the verge of walking out and telling him what i thought of him or my husband was about to 🤣🤣
Communication is what my Rheumatologist swears by...and that is exactly what patients need. I have taken a friend with me in the past to the useless Rheumie, she said to him, so what is wrong with her then...he just shrugged .......First one said, don't ask questions just listen!!....I have sat in a waiting room with a patient with him dreading going in to see him...that is so wrong.......the good ones at our there....do some research.....
As PMRpro said....go to the Scottish PM R charity.....ask them......
I had it on left side of my face but went away with codeine , I did see three dentists thinking it was toothache until one of them said it was neuralgia. This feels completely different
You don’t get much choice here but I’m not used to it here , I was living in America for 15 years it’s a very different system over there yes we pay for it but you would definitely leave knowing what was wrong with you and not be spoken down to .
I looked up myself about my Rheumatologist, I knew he specialised in PMR and teaches at medical school....I asked my GP to refer me to him, she said I can only try, so we hoped for the best.....so I did get my first choice.....others I was unlucky to be sent to....Remind me please what country you are in....have forgotten....I'll blame my adrenals!
That is so awful, that doctor should be reported. If you think you have GCA you should have a opthamologist/neurologist take a look at you as rheumy's check out arthritis and PMR etc. I would suggest staying at 30mg until you can see a proper doctor because once your eyesight is gone, it is gone. I hope all goes well for you.
I’m so sorry you’ve experienced this. I have had the same with a couple rheumatologist. I got the impression they didn’t believe what I was saying and would talk over me. One also said the practically the same- I’m too young and markers are not showing any signs of inflammation, regardless of the prednisolone, reiterating the need to go by markers and not to act otherwise due to no signs of GCA (I had all the symptoms). My husband made a formal complaint, the rheumatologist was so rude, almost word for word like yours, reducing me to tears and left me wondering what was going to happen next, being told to reduce as quickly as possible and not to increase pred when having pain.
I now see the head of the department and she’s brilliant.
Thanks I’m having a chat with my GP on Friday and I’m going to tell him everything including that he said not to listen to him because he’s not the expert 🤣 let’s see what he says to that , my doctor is a old and very experienced doctor do don’t think he will be too happy x
Goodness, how terrifying for you. I'm in Scotland and had these names given to me when I was pondering a private appointment. Not sure if a quick private second opinion is an option but in case so, passing two names on. Can't give you a view beyond that but really hope you seek a second opinion one way or another. all best
Thank you I will definitely look for a second opinion, David McCarey he works at Ross hall hospital I was meant to see him last year but they cancelled twice I will try him again 👍
If it's any help I have never seen the consultant in charge of rhuematology it's always been a different registrar every time, all with their own and differing opinions. One young lady said accept that you will never be the same again, listen to your body, rest and reduce the steriods slowly and when you're ready. So have ignored the rest and taken her advice which is much in line with what is said on this forum. In your place I would have demanded to see the consultant in charge.
Morning! I had the exact same response, was told my ‘markers weren’t up enough! paid for a private consultation in the end and saw a specialist , unfortunately am now left in limbo, tried to return to the NHS after getting my diagnosis but have been passed from pillar to post since, taken myself off prednisone, aching all over now struggling badly, waiting for my NHS hospital referral 😩🤷♀️ , I’m 52! Good luck keep us posted xx
Classic.. I'm angry for you. Definitely complain. If you are prepared to travel there must be more understanding consultants in Scotland. I'm sure the Scottish charity can help with that.People don't complain enough , because it's exhausting as much as anything, but it needs to be done. You have excellent support here and maybe your GP can help with where to go.
Really feel for you. It's worrying enough without someone like him. Keep us posted. Good luck
Im even wondering , if people should referred to them at all, most of them have not got a clue! seems a very grey area of medicine to them ! So disheartening when you need help the most. Think many have been in your situation, including me. So sorry PMR is just not in their remit !!!
I have to agree, mine was a perfectly nice person, but really no help what so ever.The trouble is when you get your app with them, there is so much riding on it, that it's such a let down when you can obviously see they really are just going through the motions.
You should put in a complaint ,I had a rude arrogant rheumy a few years ago and regret not putting a complaint in , seems some of them don’t know a lot about pmr or probably anything else for that matter I hope you find someone better
Exactly what mine came out with 4.5 weeks ago. They said he was newly trained and. Wry thorough, dismissed PMR outright and reduce prednisolone 1mg every three weeks till off it all together. Because symptoms started before I was 50 then it’s not PMR but he didn’t know what if got until I’m off prednisolone. Must be a new training they’re having. No discussion or answers to my questions either. I just cried
The guy I saw was newly appointed so relatively inexperienced. But he started well at the first appointment and gave me pred to cover a trip to the US. 15mg and under 6 hours later I was reborn, I cried - went to the GP to show him the improvement in a couple of days and kept a diary of the timeline. When I went back to the hospital clinic I was sent into the assistant for the day who repeated the activities of the first appointment and declared himself beaten. At this point I didn't have a diagnosis - would one not expect to see the head honcho? It turned out he was a "GP with a special interest" - as I pointed out, I could have had that at my GP as it turned out. Neither of them was interested in my report of pred and its effect - PMR was obviously beneath them. The consultant ordered more tests for what he was sure it was - all other options ruled out and 12 years later there is still nothing to suggest aninflammatory arthritis.
Aw, it makes you want to just give up bothering but then the pain and fatigue make you carry on. I’ve just had a phone call from a GP who has my test results the Rheumy did.
Dexa scan shows bone scan of my left leg is ok and X-rays of shoulders and hips are clear so I can stop the AA. Talked over me and not interested about going back to pre diagnosis fast, lots of pain, headaches around left temple and eye. Just said to ring consultant and ask him for second opinion if I’m not happy. Couldn’t get off the phone quick enough saying the consultant is the expert not the Locum who diagnosed me. 🙄.
Sadly, what is called "evidence-based medicine" has become a mere box-ticking exercise. Disease definitions say "PMR usually occurs over 50" but this is then interpreted as "PMR never occurs below 50". I've been told I have neither PMR nor mild vasculitis on the basis that it came on gradually over many years. Meanwhile, 20mg of prednisolone started easing the symptoms after only the second dose and has continued to improve matters 2 weeks later. Vasculitis UK did warn me that most rheumatologists only ever look for arthritic joints and are out of their depth if these aren't present. I've lost count how many times I've been pushed towards a diagnosis of arthritis or fibromyalgia despite absolutely zero fit to the symptoms. Science understands huge amounts about how the human immune system operates, but almost none of this seems to have made it to frontline medicine (with the exception a few very rare genetic diseases). I hope the steroids bring you relief, even without a name for the disorder.
I was told I had arthritis for 15-20 years and tested for everything under the sun all coming back clear. When eventually I saw a new doctor she gave me prednisolone which transformed my over night. This Rheumy has scrapped that after 20 mins into a consultation and no access to my surgery notes🙄
If you choose to go privately - which everyone can if they can afford it - you have total freedom of choice although a lot of the good rheumies don't do private work. OTOH, almost all private consultants also work in the NHS. It is almost impossible to get private cover for chronic conditions - or the premium is very high, reflecting the potential cost of the medication for something like RA where biologics are likely to be used or multiple surgery for joint replacements for example.
If you see someone through the NHS, it depends on the country you are in. In England there is more freedom than in Scotland and Wales: you can choose to which hospital Trust you have your first referral so you can avoid someone with a bad reputation at a particular hospital. Your GP can refer you to a particular named team but then the hospital has the right to overrule that and allocate you to someone else. If you knew who was doing which clinic you also have a bit of selection when you arrange your appointment if you are left to do that:
Once you are under a consultant you may not always see the same person at clinic - you will see one of their team and the junior doctors rotate at intervals as part of their training in the specialism. The consultant will always oversee the treatment though.
As far as I know, in Scotland you don't have that choice, you are allocated who the hospital decides on.
There is one - Rod Hughes. But getting a good mark on those sites doesn't mean they know much/anything about good management of polymyalgia rheumatica - and that is where the problem lies.
I would think that Health professionals who specialise in PMR/GCA do have knowledge and experience of the condition and it’s management. I did research the background and profile of the Rheumatologist that I used and he is very good.
But very few of them DO specialise in PMR and GCA, those who do are usually pretty good. GCA is rare so even they don't see it a lot and many appear to think PMR isn't "worthy" of their attention as it doesn't damage joints so they think it isn't disabling, you give the patient pred and they are back to normal and anyway it is gone in 18 months or so. None of those three premises is correct.
Having been down a somewhat similar route with a Rheumatologist all I will add is that you might keep in mind what the difference is between a Rheumatologist and God? God doesn't make out to be a Rheumatologist!
I hope I made you smile, but be advised that it's just not the Rheumatologists or even all of them but it's there in most specialities. In my experience, it's only the ones that deal with real life and death or devasting outcomes that don't have this "God" complex and it's the Neuro, Orthopaedic & Dental surgeons I'm talking about. They tell you it as it is, they give you all the facts and they still face you up when it's all over bar the shouting. Most of the others I wouldn't trust as far as I could throw them! Bless!
I had a terrible time with a young neurologist in the hospital when I first h a d GCA.I know how you feel .It's awful.My husband was very angry tooLITTLE UPSTARTS. THATS ALL O CAN SAY. Just move on.GO elsewhere.Dont give him your time of day.Trust what you are feeling.
Some young people have got a bit of learning to do.
Hi Rottsuzi, sorry to hear you had such a disappointing outcome to your appointment. I've had PMR since 2017, GCA in June 2019, currently at 5mg from 50mg in 2019.I live in Glasgow and my GP referred me to a local rheumie, I've been seeing him since 2018. If you like I can message you details? I know he runs private clinics as well as NHS.
Here in the US it is extremely difficult to fond a rheumy who will dx PMR under 50. After fighting with mine for a year amd multiple opinions, I went back to my GP who originally diagnosed me who agreed to treat me. After my 50th birthday last year, he laughed and said I could have PMR now.
Can I just ask a question? Is there anyone out there like me and doesn't have a rheumie,last time I had phone call which was 2 years ago and said he would leave it to my GP who doesn't bother much but do get bloods done every 3months.
It’s common in the UK. Not so much the US but in my case, my regular doctor was willing to take over my care and I am thankful. He does my bloods every 3 months and my taper.
The majority of UK patients remain under the care of the GP so no, you aren't unusual. In fact, a good GP is often preferable to a poor rheumy.
However, that is a bit of a problem when it comes to research since when rheumies DO see PMR patients they are frequently already on pred and that complicates randomising patients to study cohorts. Rheumies would like to see possible PMR patients at least once before treatment was initiated. But the waiting times mean that rarely happens - you can hardly leave a patient in agony for months when you know if a moderate dose of pred works it is very likely PMR. I did hear mention of a PMR-fasttrack set-up. If only ...
Actually even with GCA I only saw a Rheumy twice, at 7 and 9 months into treatment. But I think -
a. he was miffed because it had been diagnosed in A&E by a junior Ophthamologist - not difficult really as had already lost sight in one eye, so that department looked after me for first few months,
b. I asked awkward questions, and
c. GP and I together had sorted out a plan (based on guidelines) which he approved… and left us to get on with it!
Didn't bother me, my then GP probably knew less than I did about GCA so we discussed everything, rather than me being told what to do…and let me reduce sensibly. As she had missed diagnosis initially think she was ultra cautious.
My second GP was older, wiser and said reduce at your own pace, keep me informed, and call me anytime you need to.
Hi Dorset Lady I am writing to you as you appear to be more local than anyone else on this site.I am in Somerset and have seen a junior rheumy in Musgrove hospital, Taunton. After complaining about her appalling manner to my own GP I was contacted by her departmental head who arranged an appointment for my husband and myself last week. He spent the whole time trying to reassure me that his junior had the right diagnosis and that I DID NOT have PMR or GCA. And that, even though my GP was sure I had GCA, she was wrong. She had put me onto 60mg pred because it was affecting my right eye and the side of my head was very sore and painful. Also the pain was radiating down into my neck and my headache did not disappear immediately (should it do that with pred?). I was told to drop 10mg every two days till I was down to 15mg then one mg each week.
My question to you now is, can you recommend anyone who I can ask for another opinion? I can travel a small distance, Bristol, Exeter or Southampton but not up North.
Bristol is usually very good and so is the Royal National Hospital For Rheumatic Diseases at Bath. If you raise a new post asking for a recommendation there are people in the forum who have attended both. Do you want a private recommendation of must it be NHS?
The pain doesn't always disappear immediately - it may take some days and it does depend on the dose. Sometimes even 60mg is not enough to start with.
Hi thanks for your response. I am seeing my own GP tomorrow morning and want to ask for another opinion but really don't know who to ask for. Bristol is easier to get to but I really want someone who will really listen and not treat me like an idiot.
I don't know the current rheumies at Bristol - but I'm fairly sure there is someone who does, Bath too. But they won't see it here - that's why I suggested raising a new post.
I’m in the same boat. I was urgently put on 50 mg as (I thought there was medical guidance out stating should be 50-60mg at initial diagnosis). I too had a total ar*e at the start who was patronising and dismissive on the first visit. I too was upset to the point of crying when I came out. Felt like he scolded me like a little girl. I complained about him. I thought it was coming across as cultural arrogance. I’m the “Little woman” I was furious when I stopped crying. He denied his treatment of me and I didn’t have a recording so nothing it was his story against mine. Nurses heard him but too scared to back me. Second opinion at specialist hospital confirmed PMR. But told me could not tell if GCA as I was put on steroids so quickly they could mot diagnose. So like you I am just reducing blindly (pardon the pun. I got another arrogant ar*e who examined my knee. He asked about my problem I tried to explain the things that happened like the pointless physio as I k we it wasn’t muscular or helping. While I was describing my symptoms he became intolerant and told me to shut up and listen to his questions 😱 I should mot get the op done as I might die from COVID being immune suppressed. Both specialists did not have English as their first language. I think it’s a cultural arrogance. A very demeaning, misogynistic approach. To be honest I’m sick of it. When studying and working over here they should have more training in bedside manner and treating the person and not the symptoms. I’m always too flummoxed to say anything at the time and COVID would not allow me to bring anyone. I really empathise. Sorry I emptied my rant in your thread. Ask for a second opinion. Where are you based. Hope you find better treatment.
And anyway - you will be accused of racism. I had a middle-east origin medical consultant on take the night I had my first TGA (transient global amnesia) which was correctly diagnosed by the A&E consultant. A TIA had already been discounted - but the gentleman decided it was an alcohol problem (I'd had a glass of wine the previous night, helpfully mentioned by my husband) and wrote up a banana bag (mixed nutrients in a bright yellow solution used for alcohol withdrawal symptoms. My husband asked when I could come home and was totally dismissed by the gentleman because there had to be a carotid scan, and MRI and something else before he'd even consider it and that would take up to a week. They were done by after lunch as OH called in all his favours with colleagues. But then there needed to be a discharge letter - which the gentleman claimed wasn't his responsibility - a misapprehension he was rapidly disillusioned of by another consultant! We did get the impression that he wasn't the most popular blue-eyed boy of the department! But from beginning to end it was the cultural problem. I'm delighted to see them working in the UK- but the cultural side needs some work.
You are right but it’s not racism it is quality standards in basic customer care which seem to be missing from training. What happened to unconditional positive regard ?? Therapeutic alliance. There needs to be standards of care set if treating anywhere.
I meant WE would be accused of that for criticising the person in question ... All too often they don't have to do any entry training. They may know the medical stuff - but they don't come up to the same standards otherwise.
It was paralleled by allowing private companies to bid for NHS contracts - their staff never had to come up to the same standards as NHS services.
Yes I assumed it would be us accused of racism. However, that does not play out when one of the GPs female and native who was cheeky and condescending. Sneering haughtily when I was asking if there were any supplements I could take or things I could do to help myself. She said “your making this your life and that’s not good”. Damn this brain fog, I wanted to say “this is my life. I’m trying anything to change that.” I can’t even look her way. Best Dr treatment I find is Locum Drs. My experience is they listen, they refer, don’t pretend to know it all, are to early on in career to have bias and admit when they don’t know. First one did my blood tests and right away diagnosed me with PMR & GCA after 8 months of my own GP telling me it was stress and the menopause. 😡
Absolutely - that sort of GP playing the "I'm educated - you're not" really gets up my nose! They forget that many of us also have degrees, also know medical science and may even have been healthcare professionals. And she is wrong - simply because calcium and vit D are supplements and SHE should be providing them. Plus, she is obviously totally unaware of how a chronic illness DOES become your life - because you have to live with it. And with that sort of GP, it is all down to you because they aren't much b£**%y use ...
Yes my best experience with PMR was with a locum - so good I wanted to follow her where she went, but of course one can't do that! On the other hand, the cultural thing doesn't last past the first generation I suspect. My new doctor must be of Sri Lankan origin, judging by his name, but he is from the UK, British and Czech educated, and very very good with my PMR, and got me a very prompt referral to orthopod for my knee (must have a magic way about him) and has also taken my husband's various (slightly hypochondriac at times) complaints seriously. We think we are lucky and hope he stays here.
Definitely agree you need to dump the useless rheumy and reduce ever so slowly.
You seem to have a decent and understanding GP, perhaps s/he can continue to treat you without the involvement of a rheumy. I'm about to request this of my GP after experiencing a "I know it all... I'm the expert...Do what I say" rheumy with blinders and ear plugs.
I was fairly new to the diagnosis when I had a mini stroke and was having difficulties talking. I was in the ER when a nurse practitioner said that I made up PMR and it was not a disease! He even accused my doctor of making it up! It's crazy. I wished I could have been able to give him a piece of my mind but I was struggling just to get simply words out.
plain and simple get a 2nd opinion. Who do these people think they are. They get a qualification and can literally ruin someone's life. My husband had a gp who kept saying reduce reduce. He's had quite a few "do's" and thankfully knows now if it happens he takes an increased dose. Wishing you Good luck.
Maybe, just maybe, they want all under 50's to be off prednisolone because it lowers your immune system making you more susceptible to catching covid. I agree to try and lower your pred gradually then get proper tests done, good luck, stay safe
You can certainly tell you pushed a button with many members. You have it right....listen to your body. I hope you proceed to get another opinion or go to the A & E as many have suggested.
I have GCA with textbook symptoms....two doctors failed to diagnose me until I wound up in the emergency room, blind in one eye.....then they obviously got it right. I'm in the states, and I can attest to good and bad here. It is the patient that 'drives things. Please don't wait and pay a heavy price. You are right~!
I remember when doctors were like detectives....they found out what was wrong. So please take all the information and gut feelings you are armed with and let them know who the boss is...in a nice way, of course, but remember you are the boss. Whether it is NIH or private insurance here in the states....I swear...you get the quality of care you demand💖.'...
omg I certainly did 🤦♀️I didn’t realise it was this bad clearly something has to be done about it . I spent 15 years in the states so I do know the medical system very well over there and they definitely don’t look down on you like a child , you have your say . I’m not having them dictate to me and make me feel like I have nothing wrong with me .
I am new to this forum and am in the US. I woke up in February and am 52. I was misdiagnosed after two ER trips and put on high doses of prednisone. I am on 15 mg and had tow shots yesterday for pain and inflammation. I would get a second opinion as it took three months before I was diagnosed. GCA is very serious. I just read a great book about PMR by Kate Gilbert and ordering the Inflammation Syndrome book which is highly recommended.
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