Terrible rheumatologist : Hi went to see a... - PMRGCAuk

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Terrible rheumatologist

Rottsuzi profile image

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

152 Replies

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?

Rottsuzi profile image
Rottsuzi in reply to SnazzyD

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 .

Thank you

Coffeebeans profile image
Coffeebeans in reply to Rottsuzi

Losing your sight on a differing opinion is not a good place to be is it!

What an awful consultation. I'm not surprised you've come out feeling deflated and annoyed. Hope you get it sorted.

Rottsuzi profile image
Rottsuzi in reply to Coffeebeans

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 .

A10mg drop is too much…. You will feel ill regardless, 1mg per week at the very most is my advice

Rottsuzi profile image
Rottsuzi in reply to SnazzyD

The other thing he said was who put you back up to 30 I said my doctor he said don’t listen to him we are the specialist 🤣

Find a new rheumy asap!! Where do you live? It's possible someone in your area knows a good rheumy (can't be a worse one that's for sure)!! 😏

Rottsuzi profile image
Rottsuzi in reply to Constance13

Hi I’m in Glasgow think I will need to look for a new one for sure .

PMRpro profile image
PMRproAmbassador in reply to Rottsuzi

You know there is a Scottish charity?

pmrgcascotland.com/

Bit more difficult to choose your rheumy in Scotland but there must be someone less obnoxious.

Rottsuzi profile image
Rottsuzi in reply to PMRpro

Ok I will have a look at that . Thank you

Where do you live in the UK and how far are you willing to travel?

My initial experience with a rheumatologist was like that. There were a few things said like "I couldn't take prednisone for every "little" pain." The other thing was something about "noncompliance".

I didn't request another rheumatologist but for some reason a new rheumatologist showed up at one of my followup appointments. We basically did a reset. She "requested" that I stop prednisone to see what happened. I complied the best that I could and PMR was diagnosed.

Rottsuzi profile image
Rottsuzi in reply to

Hi yes think that’s what I’m going to have to do get low enough and hopefully get a proper diagnosis.

PMRpro profile image
PMRproAmbassador

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.

Rottsuzi profile image
Rottsuzi in reply to PMRpro

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 🤦‍♀️

ChrisinNam profile image
ChrisinNam in reply to Rottsuzi

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.

Rottsuzi profile image
Rottsuzi in reply to PMRpro

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 😢

So he knows you have not got PMR or GCA by just looking at you, that is pretty impressive!!!

Rottsuzi profile image
Rottsuzi in reply to piglette

Hi yes it seems like it so gone down the prednisolone and let’s see what happens basically, awful advice x

piglette profile image
piglette in reply to Rottsuzi

Sometimes I wonder how a few of these doctors managed to qualify. Frightening that they are let loose on us.

Rottsuzi profile image
Rottsuzi in reply to piglette

It definitely is and it’s a worry .

PMRpro profile image
PMRproAmbassador in reply to piglette

I don't understand why they choose patient-contact specialities! You can be as rude as you like as a pathologist ...

MiloCollie profile image
MiloCollie in reply to PMRpro

Funny as hell!! Like Nhs managers they ENJOY lording it over people.

😂

madhouse1 profile image
madhouse1 in reply to piglette

🙈

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Second opinion, and letter of complaint once you have seen someone else.

Rottsuzi profile image
Rottsuzi in reply to DorsetLady

Yes think it will have to be , very frustrating going round in circles . He felt the side of my head and said it felt normal 🤷‍♀️

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Rottsuzi

My head felt normal…..but it certainly wasn’t internally……ophthalmic artery affected leading to losing sight in one eye..

Unless he’s got X-ray eyes or magical powers he cannot be sure…

Rottsuzi profile image
Rottsuzi in reply to DorsetLady

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 .

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Rottsuzi

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!

Rottsuzi profile image
Rottsuzi in reply to DorsetLady

He was feeling the temple at the right side said it felt normal.

PMRpro profile image
PMRproAmbassador in reply to Rottsuzi

That just means GCA isn't affecting that bit - he doesn't have x-ray vision ...

Rottsuzi profile image
Rottsuzi in reply to PMRpro

Very scary we are putting our trust in these doctors.

madhouse1 profile image
madhouse1 in reply to PMRpro

Or a crystal ball like mine! What is the matter with them?

PMRpro profile image
PMRproAmbassador in reply to madhouse1

Delusions of grandeur????

madhouse1 profile image
madhouse1 in reply to PMRpro

👍😂

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Rottsuzi

My temporal arteries weren’t affected- but deeper ones were! As PMRpro rightly says, doesn’t mean you don’t have it elsewhere.

Rottsuzi profile image
Rottsuzi in reply to DorsetLady

Ok thank you for all the advice all I can do is come down and be very on top of how I am feeling x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Rottsuzi

Keep notes so you can explain at next appointment how things have gone.

Rottsuzi profile image
Rottsuzi in reply to DorsetLady

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 .

diana1998 profile image
diana1998 in reply to Rottsuzi

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.

in reply to Rottsuzi

What kind of neuralgia? That changes things too because I would have never let anyone touch the side of my head! Dental work was impossible sometimes unless I had general anesthesia.

Rottsuzi profile image
Rottsuzi in reply to

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

in reply to Rottsuzi

That sounds like trigeminal neuralgia. Some people get teeth extracted needlessly hoping that the pain will stop.

Rottsuzi profile image
Rottsuzi in reply to

That’s exactly what it was I have never took it again thank god it was very painful.

in reply to Rottsuzi

Trust me ... I understand what it feels like!

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

Rottsuzi profile image
Rottsuzi in reply to Arflane97G

That was good maybe that is the way to go .

Longtimer profile image
Longtimer in reply to Rottsuzi

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....

Rottsuzi profile image
Rottsuzi in reply to Longtimer

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 🤣🤣

Longtimer profile image
Longtimer in reply to Rottsuzi

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......

Rottsuzi profile image
Rottsuzi in reply to Longtimer

It is awful, I will definitely do that thank you x

madhouse1 profile image
madhouse1 in reply to Rottsuzi

You weren’t seen in Derby were you by any chance? Xx

in reply to Longtimer

Do people in the UK get any choice about who they see or is it that you show up for a appointment and take who you get?

I saw the same rheumatologist, ophthalmologist, and GP for about 12 years. The continuity was good.

When I retired 3 years ago, I opted for a new health care system that is different for me. Now I go to my rheumatology appointments and have seen a different rheumatologist each time. I have probably had 6 appointments over the last three years and have seen 5 different rheumatologists.

I like the new health care system because I never get billed for anything. However, continuity seems to be lacking. I have liked all 5 rheumatologists so I can't say any of them were "bad".

Rottsuzi profile image
Rottsuzi in reply to

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 .

in reply to Rottsuzi

Are you a citizen of the UK but lived in the United States for 15 years? Or are you a US citizen living in the UK? I'm confused.

Rottsuzi profile image
Rottsuzi in reply to

I’m a Scottish girl travelled for 23 years and came home 3 years ago and ended up ill , weather 🤷‍♀️

in reply to Rottsuzi

I would like to visit Ireland and Scotland some day. My father said we are Scotch-Irish so I not sure which one. Genetically, part Scandinavian 😂

Longtimer profile image
Longtimer in reply 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!

Rottsuzi profile image
Rottsuzi in reply to Longtimer

I think I will research one here , I’m in Glasgow Scotland

in reply to Longtimer

I'm a US citizen but I did travel a fair amount in Europe in my younger years. I lived in Holland, Switzerland and spent some time in Romania. We hosted a few students from Germany too.

One of the German students was from the former East Germany. We visited his family in Germany not long after the reunification. That visit must have been stressful although enjoyable. I didn't have any prednisone and was in need of medical care. That was an interesting experience.

Rottsuzi profile image
Rottsuzi in reply to

Where in the us are you ? That’s great you traveled , I loved my time travelling may go again if I can get my health better 👍

in reply to Rottsuzi

Iowa --- not the exact geographical center but close to it. I think the exact center is somewhere in Kansas. The region is all part of the Midwest and mostly farms.

Rottsuzi profile image
Rottsuzi in reply to

I spent 5 years in Denver and loved it

in reply to Rottsuzi

All of Colorado is nice and I wouldn't mind living there myself. Denver is unique because it is protected by the mountains and it never gets too cold in the winter. I've been to Denver a few times but we usually do day trips outside of Denver. My wife's brother lives in Aurora

Longtimer profile image
Longtimer in reply to

You must have had some wonderful experiences....

PMRpro profile image
PMRproAmbassador in reply to

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:

nhs.uk/nhs-services/hospita...

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.

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.

Rottsuzi profile image
Rottsuzi in reply to Sally001

Thank 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.

Good luck, I hope you get it sorted.

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

Dr David McCarey Dr Anne McEntegart

Rottsuzi profile image
Rottsuzi in reply to Polywally

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.

Rottsuzi profile image
Rottsuzi in reply to ChrisMcT

Hi I should have because he is going against the first rheumatologist I seen 😡

Hi I live in Aberdeen, here is contact info for Scotland

Colour photo
Rottsuzi profile image
Rottsuzi in reply to Mazxstitch

Thank you x

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

Thanks not good you can’t live with that pain , we are living this not these doctors 😡

So anoying been there if you didn’t have a laugh about it you would cry your self to death 😂🤷🏽‍♂️

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

Rottsuzi profile image
Rottsuzi in reply to Sophiestree

Thank you , I’m definitely going to let it be known that I won’t be seeing him again my life in his hands NO WAY

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 !!!

Longtimer profile image
Longtimer in reply to Viv54

I have always thought, because there isn't a definite test to show there is PMR, they really don't care!....some of them anyway....

Viv54 profile image
Viv54 in reply to Longtimer

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

PMRpro profile image
PMRproAmbassador in reply to madhouse1

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.

madhouse1 profile image
madhouse1 in reply to PMRpro

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. 🙄.

Longtimer profile image
Longtimer in reply to madhouse1

This all makes me so angry....where is the empathy anymore??.....has lockdown made them worse!.....

madhouse1 profile image
madhouse1 in reply to Longtimer

I think they were well on their way before lockdown sadly Longtimer. xxx

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.

Viv54 profile image
Viv54 in reply to AtopicGuy

My problem is I do have chronic arthritis, she would only focus on this ,and skimmed over PMR, it's so disheartening !,

madhouse1 profile image
madhouse1 in reply to AtopicGuy

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🙄

Request 2nd opinion from another rheumatologist due to lack of confidence in the one that you saw.

madhouse1 profile image
madhouse1 in reply to Liby57

If anyone knows a Rheumy in or near Derby Derbyshire that knows and understands PMR please shout up.

Liby57 profile image
Liby57 in reply to madhouse1

You might find one on here.

topdoctors.co.uk/doctor/pol...

I’m still waiting for an appointment with rheumatology, I gave up in the end and paid to have consultation with Professor Moots.

madhouse1 profile image
madhouse1 in reply to Liby57

Thank you x

PMRpro profile image
PMRproAmbassador in reply to Liby57

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.

Liby57 profile image
Liby57 in reply to PMRpro

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.

PMRpro profile image
PMRproAmbassador in reply to Liby57

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.

madhouse1 profile image
madhouse1 in reply to PMRpro

They definitely aren’t correct as we know only too well.

Rottsuzi profile image
Rottsuzi in reply to Liby57

Definitely going to

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!

madhouse1 profile image
madhouse1 in reply to Benos123

😂

Benos123 profile image
Benos123 in reply to madhouse1

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.

IT is a horrible disease and you need compassion!

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.

Rottsuzi profile image
Rottsuzi in reply to mcbouchon

That’s would be great thank you

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.

Thanks,good to know iam not alone xx

PMRpro profile image
PMRproAmbassador in reply to Harrywogan

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 ...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Harrywogan

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.

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Well, b) alone is enough isn't it?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Yep!

Sirtomas profile image
Sirtomas in reply to DorsetLady

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.

Thanks for your help

PMRpro profile image
PMRproAmbassador in reply to Sirtomas

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.

Sirtomas profile image
Sirtomas in reply to PMRpro

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.

PMRpro profile image
PMRproAmbassador in reply to Sirtomas

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.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Sirtomas

Can’t wait to give you a recommendation- but have put out a feeler to someone who might be able to…will get back to you if I get an answer.

But as suggested by PMRpro might be worthwhile raising a new post.

Sirtomas profile image
Sirtomas in reply to DorsetLady

thanks, I will try that.

Rottsuzi profile image
Rottsuzi in reply to cranberryt

Omg that’s awful

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.

PMRpro profile image
PMRproAmbassador in reply to Singr

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.

Singr profile image
Singr in reply to PMRpro

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.

PMRpro profile image
PMRproAmbassador in reply to Singr

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.

Singr profile image
Singr in reply to PMRpro

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. 😡

PMRpro profile image
PMRproAmbassador in reply to Singr

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 ...

Singr profile image
Singr in reply to PMRpro

Oh that made me laugh. You are so right.

Rottsuzi profile image
Rottsuzi in reply to Singr

Hi think that’s what I’m going to get next that’s it’s menopause 🤦‍♀️

Bcol profile image
Bcol in reply to Rottsuzi

At least us lads don't have that one thrown at us!!

HeronNS profile image
HeronNS in reply to Singr

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.

Rottsuzi profile image
Rottsuzi in reply to nuigini

Yes I do have a good GP so let’s see what he says next

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.

PMRpro profile image
PMRproAmbassador in reply to Amkoffee

Makes you wonder a bit about his training!!

Amkoffee profile image
Amkoffee in reply to PMRpro

I reported it to the hospital but don't know what happened, if anything.

Singr profile image
Singr in reply to Amkoffee

Oh jeez!

That’s the worst!! Of course your markets are normal…your on pred!

I had a terrible rheumy as well that only lasted 3 appointments before I “fired” her and am now under the care of my great GP.

Hope you have the option of getting a second opinion!

Rottsuzi profile image
Rottsuzi in reply to PMRCanada

I will make it my point to get another opinion because I definitely don’t think I’m wrong .

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.

New doctor?

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

This problem seems to be widespread. I'm not saying all doctors are great in the USA but I don't think it is that much of a problem. Here it has become standard practice to be sent a "satisfaction survey" for most medical services. I get those surveys all the time. I don't know how accurate they are but there are standards that must be reached. Individuals are reviewed within an organization and must meet certain standards or else they are released. The organization itself has to maintain overall standards of excellence because if their ratings aren't good, people get care somewhere else. Even insurance companies can withhold reimbursement to a certain extent if good service isn't provided.

I think there is dissatisfaction with the health care system in the USA but it is for different reasons.

"Even though we spend more on health care than any other high-income nation, we are less satisfied with our health care system. This study indicates that the leading reason (that happens to be unique to the United States) is the concern we have about uncertainties in being able to access our most preferred care, that is, the extent to which people feel that they can access their top health care preferences at a time of need."

pnhp.org/news/why-are-ameri...

There is some dissatisfaction with the cost as well but that is improving.

"A new high of 67% of U.S. adults are satisfied with the total cost they pay for healthcare. That is up from 61% a year ago and 58% in 2018. The prior high was 64% in 2001, and the low is 54% in 2006"

news.gallup.com/poll/327686...

HeronNS profile image
HeronNS in reply to

Sending private message.

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💖.'...

(I do get wound up!)

Rottsuzi profile image
Rottsuzi in reply to Grammy80

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 .

Thank you

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.

Clare

HeronNS profile image
HeronNS in reply to Luckipiper

Were you diagnosed with PMR or GCA? What was the misdiagnosis?

Rottsuzi profile image
Rottsuzi in reply to Luckipiper

That’s good you are on top of things , it took me 10 months and 3 doctors to get them to see something was wrong . That’s a good book Kate Gilbert 👍

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