I have just returned from my 6 monthly appt with my Rheumatologist. She was talking ‘at me’ before I’d even sat down. Maybe I was rude but I interrupted her and said “Good Morning”. I have reduced to 4.5 mgms Pred and thought she would be pleased by this, but she asked why I was not off Pred altogether. I explained I was reducing very slowly and that so far that had worked well for me apart from the chronic tiredness which I expected. She said after 7 years I should be off them - didn’t seem to realise that I had had a GCA scare during lockdown when my dose was raised to 60 mgms. She then said I was probably dependent on 5 mgms for life and that she could give me ‘another tablet’ to help with that. I replied that I was happy with my slow taper and wanted to try to get off Pred altogether. I thought maybe I was pushing my luck ar 4.5 mgms but asked if I could have a Synacthen test. She looked staggered that I knew to ask for this and said “No - we’ll do that if you manage to get to 2.5 mgms”. Her attitude throughout was “I’ll talk - you listen” and I had to interrupt to ask questions. Throughout she spoke very quickly and seemed in a desperate hurry.I think the appointment lasted about 3 minutes! As my local hospital is an hour’s round trip by car I felt shortchanged! I left feeling flustered and realised I hadn’t asked some of my questions - written down on my bit of paper which I didn’t look at!
Surely consultants should be well-mannered enough ( not to say trained) to listen to their patients!
Sorry - I’m just offloading!
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Plantmad
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Offload away! I would also be really miffed. I just don't understand these types of docs, they sure are not getting much info from the actual patient to you know, try to HELP them.
Manners don't cost anything - maybe she's going through a stressful time, but she doesn't need to pass it on to you.
Do you have an email address for Rheumy dept so you can ask the questions you need to.. and maybe see what feedback you get from this appointment - does a copy come direct to you or your GP - or can you access through NHS or GP surgery App?
Thanks for replying DL. I don’t have an email address for the Rheumie Dept, but I will get a copy of the letter she will send to my GP. It has occurred to me that I could ring the Rheumie nurses with my questions - they are always pleasant and will approach the consultant for me, but shouldn’t have to do this so soon after an appt. Hey ho!
Definitely ring the Nurses and tell them why you're talking to them and tell them what you've told us.
My Rheumatologist spends so much time with each patient that her clinics run very late - but I don't mind, as I know she will listen to each patient and she cares. Why, oh why can't they all do that? 🌻
I realise how fortunate I and others who can name her as their Rheumatologist are. I worked in the NHS for almost 40 years and am horrified at some of the things I read on here. I agree with PMRpro that you should complain to the CEO. (See if the Nurses give you any clues as to their opinion of her! 😉)
"She then said I was probably dependent on 5 mgms for life and that she could give me ‘another tablet’ to help with that"
Hydrocortisone I presume. Doesn't "help" - just replaces. And pred is approved for the management of adrenal insufficiency. Why change what is working?
I would write to the Trust CEO with a complaint. They are getting a bit more conscious of their public persona and plain rudeness and dismissal of the patient isn't a good look. When we did that about my daughter's lack of progress with a problem. it resulted in a very speedy catch-up. And others on the forum who have done similar after a bad experience with a doctor have seen a different doctor who did it right. She was wrong on so many counts,
Thanks for your reply PMRPro. I will consider making a complaint, although this is my second Rheumie as I complained about the first one who “talked” to her computer screen throughout the consultation and didn’t once look directly at me. She then made a mistake with my medication, which I corrected and she just waved her hand at me!
I had a similar experience in that the questions I had written down were glanced at and pushed to one side. The appointment lasted less than 5 minutes and that was private right at the beginning 5 years ago !
I didn’t see the arrogant so and so again. His secretary rang during lockdown to see if I wanted a phone call for £150. You can guess my answer.
I’ve looked after myself since then with the help of the wonderful people on here .
You would think when you are paying that sort of money they could at least be polite and also give you better value for money. I too rely on the excellent help offered on this forum - good people who care!
I have come to the conclusion that most doctors are introverts and tend not to be a people’s person! On the other hand, if I am having surgery for example I would prefer to have a difficult to deal with surgeon who is top class at their job, than someone who is pleasant and friendly and is just mediocre. The orthopaedic surgeon, Sarah Muirhead-Allwood, who operated on the Queen Mother and Andy Murray was supposed not to have a very good bedside manner.
It can happen - my hip replacement was done privately and his skills as a surgeon are legendary AND he has a wonderful bedside manner. It was a minimally invasive procedure so recovery was very quick. He was brilliant and it's a shame there aren't more like him.
Isn't that all Consultants nowadays? I had a consultant state that "well if we cut the Vegas nerve". I'm like - "What?!!!" (this was by a top leading Consultant at a top London Hospital.) All these appointments do now is remind you that there is no help and that they want everyone on private medical or to manage our own symptoms at home. It's also astonishing how many Consultants need to refer to the BMJ because all of them either need a better CPD system, go back into further training or not practice at all. Power corrupts absolutely!
I did get the impression she wanted to get through her list as quickly as possible but would be happy to accept her hefty cheque from the NHS at the end of the month!
I had a practice nurse, who has been at my GP practice for at least 20 years, who the other days seemed to think that if my blood test included a full blood count that they would test for vitamin D as a matter of course. It took me a while to realise that she though a full blood count meant that they would do a full set of blood tests. I couldn't beleive it!
Oh dear, Plantmad! I have been so lucky with my rheumies. My department (Salisbury hospital) sent me a brief questionnaire after my last (phone) appointment in which I gave them a high rating for their service. Does your hospital have a similar feedback questionnaire? Might be worth enquiring.
A friend of mine’s son is an orthopaedic surgeon at Salisbury. He used to be in a large London hospital and he says it is really refreshing in Salisbury as they all work together as a team, while in London they are all playing political games with each other.
I just gave horrible feedback to my PCP on one of their surveys. Leaving her. She's the one who won't accept the PMR diagnosis from my internist husband, and is too moral superior to give me predisone.
Hi, I can completely relate to this ( see my recent post) and I had almost the same experience. It's upsetting and left me feeling I was somehow failing in my ability to get better! I do think there is an agenda either fueled by cost or lack of understanding of the illness by some professional s, and we are the one's suffering . We should at the very least be listened to during an appointment and this isn't happening. I've requested to be referred to another Rheumatologist or another G.P. at my practice to oversee my care, as the present Rheumy is the practice's " expert in Rheumatology" and not an actual Consultant. They are telephoning me Monday next. I have to say, this forum has helped me more in a few weeks than the whole 19 months under that G.P. and given me more knowledge and information for understanding and managing my conditions. Good luck and stand your ground. 💪
consultants have to do anual appraisal s where they have to demonstrate good continuous professional development. They are also assessed by thier trust. In order to help her with this - why not write to her politely and give some feedback - you can put your questions into the letter too. It would be better then taking out a complaint- . If you offer the letter as patient feedback on consultation style and request another apt to discuss issues that were not discussed- this could show the consultant you are not to be trifled with and want to be taken seriously as well as give them the opportunity to change and improve without compromising their professional reputation.
some of these “so-called” medics think they’re above everyone else. And good for you interrupting her. I would have done the same.
My husband had a similar experience with a radiologist. The said person was extremely rude and barely spoke. When someone is worried about their condition and get a response like this then it doesn’t help you feel reassured.
What a pity , i dont like to class people , but with them they see to be a breed of there own , i gave up going years ago to see them, total waste of time !
They seem to all be like that I left one for her attitude… I got another nicer one, but he is not willing to listen to my concerns. Or completely ignores my questions.
My friend used to work at a hospital as a medical secretary. She said the consultants (in pathology) thought of themselves as gods and expected to be treated as such.
My own rheumy was polite and pleasant on the surface but not at all sympathetic. He also poo-pooed my dietary weight loss which I proudly told him, by saying "well you're not down to what you were when I first saw you". Er... I was ill then, with GCA!
Plantmad's account of that appointment doesn't sound to me like someone having an "off day".....
When we see them only every 6 months, they cannot afford to have off days! 😠
As a retired Health Professional I know that we just have to keep calm and carry on whatever is going on in our life or with our own health etc. The patients come first. (In my book!)
I'd say they are paid to NOT have off days. And any other HCP would be on the carpet if they were permanently having off days. What happens outside work - stays there.
Don't read into something that's not there. I meant probably they were having a bad day that's all, Everyone in the NHS is uunder severe pressure and sometimes you need to give them a bit of slack, that's all.......
If I was in that situation and have been, then you need to say something there and then! Tn my case they responed and realised that maybe there were a bit harsh and apologised!
I can empathize with all the people who have problems like this. I had a good rheumatologist, who listened to me and discussed my problems. She told me she was moving to a different hospital and I had a choice of following her or changing consultants. Stupidly I chose the latter because the hospital was much easier to get to. Recently I saw the new rheumatologist for the first time. I had a list of things to raise, but she intimidated me from the start; as soon as I asked a question she told me the sole purposes of the appointment were to check whether I still had symptoms of GCA and where I was at with my prednisolone. At the time, after much agonizing, I was part way through DL's 7 week taper from 11 mg to 10 mg. She was furious, telling me the regime was rubbish (she seemed to think I'd invented it for myself) and that I should be taking 10mg and 11mg on alternate days. I refused to change - in the 7 weeks I had 2 social engagements, a holiday and 2 eye operations. After much argument I agreed to try her method when I was ready to taper further. I did manage to raise a couple of my concerns, but mostly abandoned them thinking she would not be interested anyway. Over the last few days I have been watching the sessions from the PMRGCA Spectrum meeting. The first one, presented by a consultant nurse specialist, made me think how much better things would have been if I'd been able to see one 18 months ago when I was diagnosed and started treatment with 60mg prednisolone. I've never been told I could contact a nurse, but I see there is a telephone number for rheumatology nurses on the letter the consultant sent to the GP (I don't say 'my GP' because if I need a GP I usually see one I have never seen before; the last one I saw intimidated me by her consciousness of how little time she had with me). Sorry this is so long, but it's nice to share it all with people who understand.
What a shame - why not write to your previous consultant and ask if the offer still is available on grounds of breakdown of relationship with the new one?
So sorry you had this experience with your Rheumatologist. I am so lucky with mine and he always spends time answering my questions. Even during COVID he rang me and we had a long chat about PMR and COVID. I think he's a good bit younger than me so hope he isn't planning on retiring.
On the other hand when I met my Neurosurgeon I was glad I had asked his Secretary what his "bedside manners" was like. She was very truthful and so I knew what to expect. I would describe him as professional and efficient. He was however, highly experienced in his field and an excellent surgeon according to my other doctors who recommended him. He did an excellent job on my spine and gave great advice which helped me in recovery. By the time I was discharged he had become more relaxed with me and we had a good laugh at my last appointment.
I don't pick the doctors for their personality but their skills. I wouldn't do well with a doctor who doesn't listen and talks over me though and would defo make a complaint as that's just rude! It's difficult with NHS as you often don't know who you will see. I had private medical insurance for my spine so was able to choose. My GP helped me with my NHS Rheumatology referral telling me to see my Rheumatologist as he had special PMR clinics. So glad he did that.
My rheumy is exactly like yours, very abrupt and doesn’t listen, he’s been rude to 2 of my daughters and even my husband has had to have words with him. No need.
As repeatedly explained on the forum, a test that assesses if your adrenal glands are CAPABLE of producing cortisol when stimulated with the hormone ACTH. It is not done until you are at a dose well below 5mg pred as above that the production of cortisol is suppressed anyway.
And not everyone needs to have a synacthen test. I did have a morning cortisol test (which is different and with poor result would have pointed to the need for synacthen test) a few years ago, GP's advice not my request, and the result was okay and a couple of years later was (finally) able to taper off pred altogether. If you have increasing problems of fatigue, etc., not related to PMR symptoms as you reduce (or a poor result from a morning cortisol test) then it may be a good idea to have one.
Sorry to hear that. I had an arrogant rheumie last year, but I wrote to him in Jan to tell him why I wouldn’t be back. I read here, doctors put you on Pred then want you off it asap. But we know that slow tapering and listening to your body works better. Good luck.
Good for for writing! If we just remain mute nothing will change. I too wrote to a rude and totally incompetent rheumy . I didn't get a reply of course but I've since heard she's retired so that's one less who won't be missed. Are these people living fifty years ago when we "commoners" treated doctors like gods. Times have changed mate!
I feel for you🙏and hope you are finding a way through this . I am am down to 4mgs trying to slowly reduce to 3.5 and experiencing a lot of pain / exhaustion (10years of Pred) Doc has decided the pain is due to arthritis ( defo in hands and feet but the ‘long’ pain in shoulders, arms legs feels like PMR.i requested a synacthen test but informed no point as I now have arthritis . But what does that have to do with whether adrenals can wake up or not ! I despair . Private rheumatologist told me arthritis due to hormone levels so I asked gp if we could discuss HRT as soooo painful “Not at your age” ( 71) Conversation cut off - there’s something deeply demoralising trying to figure the most effective way to identify and manage chronic pain whilst being made to feel stupid for wondering if there’s an alternative to off Pred. and more codeine . 😘🌈
"Private rheumatologist told me arthritis could be due to hormone levels" I am REALLY interested in this but, despite some Google research, I haven't been able to find anything to back this up?
Mmmm will check these out. My rheumatologist told me my carrotty hands were Seronegative RA and prescribed Methotrexate. (He had previously told me PMR was in remission and to stop Pred as 3.5mgs wouldn't be doing anything) The resulting astronomical flare was how I discovered this site when a daughter bought me Kate Gilbert's book! I contacted Dr Hughes whose name I found here as I was getting desperate. He told me the carrotty hands were not consistent with RA, that Methotrexate would be of no use, and that if you walked around a supermarket and looked at the hands of women over a certain age, about 30 percent would show signs of ...well - lumpiness. (bit technical sorry ) which he said is due to falling oestrogen levels. Think he described it as something like hormonally induced arthropathy. I was shocked as regarded menopause as having been symptom free. I've not been able to find out anything else and both my current NHS rheumatologist and doc. have said HRT not appropriate.
OMG I am appalled! Three and a half mgs would be doing heaps. Did these so called specialists even go to medical school? I am convinced that low hormone levels would explain a lot of my problems but of course, at my age, 74 , I can't have HRT. Lots more research to be done here I think?
Who’s going to fund research into women’s health 60 plus 🤣 not economically or otherwise interesting 🙈( one of my daughters’ friends who’s a gp was complaining to me about how much money goes into male baldness research rather than antibiotics) …. Forgive me guys on here …and the gendered PMR slant must make it even more difficult for you to deal with PMR … so sorry 🙏. So Louisa , why can’t we have low dose HRT ? Is that physiologically more damaging than the constantly re - calibrating /reducing Pred and the seeming endless supply of 30/500 Co codamol which I’m encouraged to take ? Another subject I know … xk🌈🦋
I have a friend - who had GCA - who is in her mid-80s and still on the HRT that was started many years ago. There are specialists who believe HRT should be for life!
Who knows what they think!!!! I was encouraged to stop the HRT I was on and did so after the latest of a series of scares - which was later shown to be inaccurate! Worst thing I ever did because the first signs of PMR appeared a few months later.
I am SO glad I changed to an excellent, sympathetic, top notch rheumy at a teaching hospital near my home. She loves that I do research on my own and when I suggested we try Kevzara she readily agreed. She said she enjoys the fact that this forum helps inform "our" decisions re my treatment and totally supports my DS taper and how I put that taper on hold when on vacation, etc. I am blessed to have found her here in Ann Arbor, Michigan.
I would be pissed off! That stinks. I'd say find another than blast her on Yelp - but I know they are hard to find. I went to one that didn't make eye contact with me once! That didn't end well. Good luck !
Please don't apologise! You have every right to feel short-changed and furious. It almost exactly mirrors a rheumy appointment I had (my first and last with this woman) . I posted about it so you may care to look it up? Mine predicted that I would be in a wheelchair if I carried on as I was! Oh Glory! How do these people even exist.....?
I just got back yesterday from appt I had to request, it was with Rheumy nurse. Hadn't seen anyone since my initial consultation back in May 2023. I was becoming anxious at sudden pains I was getting, not gradually but just moving, I'd get a pinching pain. I am very very lucky to be still able to play tennis up until all these pains. I've tapered over 18mths from 12.5mg to 4mg steroids, not for the first time. Anyway she advised me, sorry, you fell out of the system, no one knew about me!! Then she must have told me about 10 times (in a 30min appt) that "we" must remember "we" are getting older and "we" are not 21 any longer!!!! She seemed to want to talk at me & kept looking over to my notes I'd got to remind me of all my queries. Told me I didn't need blood tests anymore until I get PMR pain again. Oh..also told me that "we" would NOT expect you to still be on steroids after all this time!!! Does she not know what goes on in our PMR journey? Anyway, I felt quite fed up when I left. But I shall be looking forward to being 69 in a few days, after all it's only just over 21 x 3!!!? And I'm going to play tennis today🤫
I hate being patronised anyway - but like that, no, not acceptable and I would tell someone their staff need reminding we are equals in this game, My favourite meme is discussed here:
The arrogance and rudeness of some consultants has now ceased to amaze me. Thank you to all those who have replied to my post with advice, support and similar experiences. Where would we all be without this excellent forum?
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when can you have an adrenal testing?
GCA a mystery 
Follow up appointment at GP
Puzzled!!
