I’ve moved from Midlands to hampshire and saw the new rheumatologist today. I have had PMR for 6 yrs now and have had several flares each yr. today the consultant said he’s never had a patient with PMR for longer than 18 months and he wouldn’t have left me to manage by myself. He then proceeded to tell me all about PMR. I pointed out I know what it is, but he bulldozed on with diagrams etc and said that as my previous rheumi has left me on steroids for so long I’ll never be able to get off them. I have an unavoidably stressful life which generally causes the flares when things get too bad. My confusion is that what he said means that the first rheumi was negligent (which I don’t believe) or he’s wrong. He was very arrogant and spoke over me until I said “ will u pls let me speak”? I’m going to ask to see a different one. But I’m also going to GP every time I flare up and ask for a blood test and examine and pass it on to him each time until I’m re referred.
confused by rheumatologist : I’ve moved from... - PMRGCAuk
confused by rheumatologist
Hi Wraysbury, what a plonker your new rheumy is. I am new to this but already have learned, from the forum and reading up on the research that he is wrong about the the 18 month duration of this condition. It is as individual as the patient, some can be in remission in 18 months but many, I think almost half of patients take much longer and some never manage to achieve remission. Also I am sorry that he was so rude. As many on here would say, first rule with PMR is listen to your patient. Hope you find an alternative soon. I think there is a recommended one near to you who many on here have seen, R. Hughes I think? Someone will be along to give the details and have all the knowledge I don't have! May be private which is costly (I had to resort to this temporarily). Sending best wishes.
When others have written about similar experience our conclusion is that the patient left that particular medical practitioner and found someone a bit more knowledgeable and sensible, not to mention sympathetic, so of course they've never had anyone with PMR lasting more than a year or eighteen months simply because in nearly every case the patient flees within that time period!
If you have a sensible GP willing to prescribe pred and request regular tests, and no serious issues which require specialist care (e.g. GCA), then you probably don't need another rheumatologist.
Btw I think I remember when you first joined the forum❤️. I was prescribed pred in June 2015, more than a year after initial symptoms. And only reached zero at the beginning of February this year (2024). So, despite so long on pred, albeit most of the time at a low dose, I did manage to come off when a) PMR went into remission and b) my adrenal function returned during my final *very* lengthy taper.
Yes I remember you too. I’ve had so much stress over the 6 yrs. but this has really made me want you fight back at last. I am a nurse with loads of other qualifications including lecturing at uni, plus we are more qualified than anyone having had PMR for so long. However what really annoyed me was when I started using technical terms and he said oh, u obviously have some medical knowledge. Then he started to step back. And speak with more respect. That made me furious as he should treat everyone equally. I’ve come across arrogant bastards like him when I was training many yrs ago. They thought they were God, but I thought they’d all died by now! .
Spot on. I did a runner too.
First doctor I went to with my symptoms was clueless and I think she thought I was just a hypochondriac old woman. Her suggestion was Celebrex, for what she (and I at the time) assumed was osteoarthritis. Needless to say after reading up on that I didn't fill the prescription. A year later another doctor took one look at the way I was walking, ran the tests again and diagnosed PMR, and I was really fortunate she was always sensible and always let me manage my taper after her initial instructions got me through the first couple of months. I'd say my experience was much better than that of those who get an earlier diagnosis but clueless treatment.
I live on the Hampshire border, and, whilst I don’t want details of your rheumy, it would be helpful to me to know if this is Southampton Hospital, please (hoping not, as I am on waiting list after a similar bad experience in Wiltshire !) thanks in advance…
No it wasn’t! I’m going to ask to go to Southampton instead. They appear to do research in the same way as Rowley Bristol did and I find them far more open to advances in medicine and treatment
I’ve been on the waiting list for Southampton for 2 years now. They used to send me an email monthly asking if I still require the appointment. After about 14 months the emails stopped arriving. I think I just dropped off their list. I wasn’t referred for PMR, I see my GP & this forum for that, after a similar experience to yours in Wiltshire, and manage it very easily! Good luck, hope you do better, S x
After this experience I’m going to get an appt with the man in Chertsey if I can afford it, as someone mentioned above and then work out my way forward. In the Midlands they saw me every 6 months and provided physio, aqua and group courses ( pre Covid). Everything changed then, but they still checked up on me. I thought I’ve managed pretty well over the 6 yrs, but this consultant has shaken my confidence and made me feel that I’ve harmed myself
IF you need to see a specialist, then that’s a good way forward. Quite a lot of us are managing it on our own now & only see a specialist if we run into trouble, or have other complaints. I don’t think being offered physio, aqua & group courses is standard,nor I’d have read posts saying it!! I don’t want you to spend your money if you don’t need to. Your choice, of course!
Oh! The arrogance of some ‘professionals’ makes my blood boil! Good for you for speaking up.
Just because he may not have had a patient with PMR for longer than 18 months [maybe they moved to another more understanding one!] doesn’t mean they don’t exist. The fact than he made adverse comments about a fellow Rheumy isn’t professional … thought it was only hairdressers that did that!
Stick with GP for now - and if it’s possible maybe get an private appointment with our ‘go to’ Rheumy - Prof Rod Hughes at Chertsey-
finder.bupa.co.uk/Consultan...
Thanks. Can he be seen on the NHS?
He will transfer to his NHS list if he takes you on.. but many find a one off private appointment puts their mind at rest [he is very sensible and knowledgeable].
Maybe give it a go if you cannot get to Southampton…
thanks. I’ll look him up
He used to but it will depend on the hospital policy these days - they are so overwhelmed that referrals from out of area may be turned down.
Pity we can't forward this thread to your ignorant arrogant Rheumatologist or, failing that, persuade him to talk to some of his colleagues.
Sorry you had such a horrible experience. I wonder if HCPs realise how much that behaviour undermines a patient's confidence in their clinical judgement.
I’m so sure that the arrogance comes from our knowledge and understanding of our diseases, and they do not like it. Because the older ones don’t know much about rare diseases and the younger ones train under them and practice as they do, like d*cks (excuse language-but this really winds me up) I had a surgeon once, so arragont and insisted he was called ‘MR’, we had words and I guess my spine will remain un-fused…)
Dear me - what a sheltered life they have led! The top PMR rheumy in the UK has been working on countering the 2 year myth and we have had plenty of people on the forum who have been on pred for over 6 years and still have been able to get off pred. As HeronNS says - anyone sensible would leave his care well within 2 years!!!!
He's wrong and the first rheumy wasn't negligent but treating the patient in front of him, not some twisted image derived from an inaccurate textbook and browbeating patients. I would complain to the hospital.
Yes, I too have experienced doctors like that who behave appallingly in one way or another until they click we are colleagues and suddenly they row back or become civilised. Had a GP like that - he obviously was on the spectrum and couldn't look at a patient and my first encounter was awful. By the second one he'd seen me at the lunchtime meeting in my white coat and NHS badge! I took advantage of it, who wouldn't, but if it wasn't urgent I waited to see someone else. It is so wrong - the patient who doesn't work in the field also deserves manners!
Well done for sticking up for yourself. I had a similar arrogant rheumie years ago who thought he knew what he was doing but didn't. Told me I couldn't possibly have PMR because I was too young (51) and even if I had had it it would have gone away after a few years. I put in a complaint and was told 'I wasn't the first'. I also, with the help and motivation from this forum, got myself transferred to another rheumie. With that fire in your belly you'll hopefully get the treatment you need and it'll inspire others not to put up with second rate treatment
I was on Prednisolone for my PMR for 7 years, admittedly, latterly on a tiny dose waiting for my Adrenals to get back up to speed. So in 2013/14 my Rheumie told me that it would all be over in 18 months and at the time I didn’t know any better! However, with some research and this fabulous group I soon realised that this was highly unlikely. In the end I managed my treatment and recovery by myself because my GP was neither interested nor helpful. Always in too big a hurry to get me off Prednisolone! I was a nurse as well and she hated me knowing anything medical! You sound very sensible and knowledgable, you will be fine. You haven’t done anything wrong. It’s your body, you know best.
what a tool. Sadly it’s all too common, take care X
18 months!! my dear mum had it for over 20 years until day she passed away x
When I had GCA I had regular blood tests which was very helpful when tapering. I now have PMR and feel very let down with no regular support with the tapering. It’s just trial and error!!!
GCA is a different kettle of fish though, so most doctors are more vigilant - but at lower doses you can ease off the tests, unless you have issues.
Since covid it's been more difficult to get regular blood test for many, so you're alone. How often do you ask for them?
Even with GCA and on higher doses, my tapering was always based on how I felt [including and any symptoms] -blood test were just a confirmation rather than a leader in that process.
Not what you're looking for?
You may also like...
Another visit to Rheumatologist…
Update re Sensible GP, Rheumatologist not so much…
Dreading seeing the Rheumatologist
Rheumatologist
Visit to rheumatologist
Rheumatologist and feeling positive 
Rheumatologist 
GP 9 Rheumatologist 0
Advice on referral to Rheumatologist
