My doctor had warned me that the rheumy she was referring me to was "weird". I thought I could cope with that because she also said she's extremely throrough. I just wanted someone to get to the bottom of what's wrong with me apart from PMR.
The scene went like this with no greeting or hello:
I walk in
Rheumy: "Well I'll be blunt. You haven't got PMR because that doesn't last longer then 18 Months"
At this point of course I should have WALKED OUT immediately but I think I was so flabbergasted I meekly took a seat.
I was told that she was having to sort out the mess everyobdy else ( I.E the health professionlas prevously seen) had put me in. That she had seen so many cases like mine this week she just wanted to go home & go to bed. I was also told I would end up in a wheelchair if I carried on taking prednisone.
I was berated and lectured to for two hours . I couldn't get a word in edgeways.
I went back to my lovely GP today and told her what had happened. She was aghast & apologetic (not really her fault). She is telling her colleagueus NOT to refer anyone to this woman again.
My wallet (I went privately) is considerably lighter but I almost feel a sense of such anger that it has motivated me to feel quite energised! Because of this site, I am SO well informed but what if I had been uninformed? Thanks for listening everyone!!!!
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Louisa1840
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Thanks to all of you and all the supportive replies, I am fine today thank you, only determined to not think that money can buy a solution to PMR problems!
Sometimes I think that I am the only one feeling the side effects of depression and anxiety from prednisone, especially when many others just complain about getting the moon face and increased weight. It helps to know I am not the only one.
I seem to get all those side effects! If I was younger I’d be covered in acne too as I was as a teenager! It makes me feel totally wired at times & weird!
Sure did D.L but it has girded my loins to make me realise there is no quick fix out there and to stick to my guns in relying on my GP and all the knowledge I glean from this amazing site and particulalry to you & Pro for all your ever ready support & advice. Thank you....
Complain. I hope you didn’t pay by the hour! What she said is factually wrong as per research and guidelines. Perhaps she has problems or mental health issues and shouldn’t be practicing for her own sake, let alone be charging for her abuse.
I know about the shock that makes one mute in disbelief, rather like that film footage of a supermarket on fire and people are still trying to pay for their groceries instead of running for their lives. I had the same recently with a doctor for another condition. He shouted at me, would not let me speak and then took that as no evidence for what I was trying to say, he even raised his hands up in apparent exasperation. I left seeing others looking at the door, obviously having heard it. I was upset, mostly in frustration because I was ambushed and spent the time trying to organise my brain cells. However, had I interrupted or shouted back I would have been classed a mad woman or similar, so I would not have come out well in any case. I suspect you would have been similarly branded had you stuck your head above the parapet. I am going to complain just to make sure the toothless patient liaison does at least tell him his manner sucks. At least I didn’t pay, I’m sorry you had to but perhaps you might have a bit more clout as a consumer.
My husband accompanies me to my Rheumy appointments. They are less likely to bully you if you have someone with you to back you up! Maybe a friend or family member could go with you next time. Obviously with Covid around they don’t want extra people with you but I just say I’m hard of hearing (which I am) and need my husband to listen for me.
If you'd shouted back some prat would have approached you with their hands raised which for some reason they are told is the way to placate an irate person (for me it triggers a PTSD reaction so makes things worse) and you would have been thrown out for threatening behaviour. That happened to me when the consultant asked ME if I had the results of an EEG and I, rather sharply, questioned why it would be me rather than her - with my (stupid) husband sitting in the room. HE never opened his mouth, I never forgave him that.
I hope there is a complaints procedure? Rudeness I can (almost) accept, complete disregard of international opinion on the part of REAL experts in the field I can't. I wonder if it ever occurs to her that she is arrogant and misinformed and that MAYBE the fact so many others disagree with her could POSSIBLY mean that she is dancing to the wrong tune?
Had I NOT taken pred I WOULD have ended up in a wheelchair - after over 13 years of pred I am still able to function fairly well.
This is why we say over and over again - be wary who you pay to see, she is not alone in her views on PMR though mercifully few are quite as bad as that. It is one thing seeing somebody that inept and rude when you aren't paying out of your own pocket but one thing I expect when i pay is at least a degree of manners.
Where in Aus are you? I know one person at least in the Melbourne area who asked for recommendations and I suggested Claire Owen - who is heavily involved in PMR research alongside Sarah Mackie in the UK and has some very up-to-date views on PMR. SM is on a crusade to dispel the 2 year myth of PMR! Not sure if Claire is that far but she does understand the role of myofascial pain in PMR and has published on it. Not sure how your system works and whether she does private work - google suggests she does,
Pro, I am in Hobart, Tasmania so just a short flight over the water to get to Melbourne. Thank you for this person's name I will do some reserach. For now I am content to rely on MY lovely GP's support but MAINLY on this amazing site. Also I must let TIME work its magic - I am nearly up to the iconic 5.9 years... (Only joking I know that is simply the median length of time for PMR it is NOT a categorical length of time).......
Sorry to advise PMRpro and Louisa1840 - Dr Claire Owen has recently given up private practice to focus on PMR research and will also, I think, be Deputy Head of Rheumatology at Austin Hospital here in Melbourne. A great shame that she's leaving private practice, but marvellous to have someone on our side doing the much needed research.
Did wonder - there are a few very good rheumies around carving a name for themselves in the field but almost none of them do private work because they plain don't have time. Good for anyone who can get referred to her though - how restrictive are the rules? I assume it is next to impossible to be referred out of state?
I've "met" Claire at zoom meetings - at ungodly hours so the USA, Europe and Aus can all join in
I think it is possible to get referred out of State simy because Tasmania is so small ( half a million people) Melbourne is regarded as our local big city & many people fly over for specialist surgery. If she's not practising any more though perhaps not.? But very good that there is PMR research at that level going on.
This is not acceptable and her ignorance of how PMR works and how to treat it is dangerous. Unfortunately it is all too common. The Charity has earmarked funds for training doctors and needs to start with the rheumatologists. There are a few good ones around but they are few and far between. In the early years ignorant ones did me more harm than good. Thank goodness we all found this forum somehow and thanks to the generosity of the experts on here managed to educate ourselves, but what abou the poor things struggling on their own and getting treatment like this? I shudder to think.
Sorry tangocharlie, yes the money is reserved to help make GPs aware of the problems associated with getting a diagnosis. They are the front line.
We worked hard to get that money £10,000 and when we were closing down and had called for ideas, we had to choose and we chose that particular one.
The National Charity cannot change or use that money for anything else as it was 'ring fenced' under the charity commissioners rules.
The preliminary work had started and your Rheumatologist was one who was engaged in gathering information from members at support group meetings with our Patron Rheumatologist in the February and it had started to take shape . The medics involved were nearly ready to go in the North East when Covid struck.
It is still ready to go once the NHS is not under so much pressure. We all know the state the NHS is at present and the problems won't be solved quickly.
Yes I have come across some poor GPs and Rheumys, but never one as bad as this sounds and at least in the UK we have clear ways to complain. Some are even part of the NHS. PALS.
The charity is run on a shoe-string (only 2 paid full time employees and 1 part-timer) the rest are volunteers. and before it came into being in 2008/9, there was nothing at all to fight GCA & PMR's sufferers corner. There is now and they are making strides, but Rome was not built in a day - it took years.
Thanks for the info, I'd forgotten it was for GPs rather than 'doctors' generally. every day we hear probems on here with rheumatologists, that needs to be tackled too as another priority. You did amazing things in the NE getting the charity off the ground.
No problem at all, we all forget things as time moves on and I only remember the 'battles'.
Anyhow a bit of history never comes amiss.........👍 onward and hopefully upward.
I was lucky when I was diagnosed in 2007 because the GP who I saw had had a patient 35 years previously, who lost their sight. In that London practice 4 GPs had ever seen a case. The 4 of them had sworn never again and she had never forgotten and had moved to the North East.
Who was the lucky bunny? Me, Doctors appt one day 60mg pred the next day.
I have never quite understood the “hierarchy “ , for want of a better word, of this wonderful forum. Could you explain about Ambassadors and pros. Who are the salaried staff? Are there any doctors on the “board” who have an interest in vasculitis? Finally if you wanted to volunteer to be on the panel what is required of you (in my case I am a retired GP and have EGPA)? As for fund raising I am writing a book which includes my own experience with vasculitis. I have had it for forty years, 20 of which I was undiagnosed. I am now in remission. If I am published (I really write children's books!)I will be giving the royalties towards vasculitis research. Why aren’t vasculitis uk and PMRGCAuk all in the same charity to give a bigger voice and also to give donations to rather than duplicating research effirts and administrative costs. Many thanks
If you look under members at the Moderation Team you find details CandyH and Fran_Benson who are both employed by the charity - and oversee the forum as the name suggests.
PMRpro and MrsNails were previous Moderators before Candy and Fran were employed, and still have PMR, and are long term members of the forum/charity. I no longer have GCA, but was bestowed with Volunteer title many years ago by previous moderator. All of us three give of our time freely.
Do you mean are there any doctors on the forum, or on the board of the charity? GPs are very welcome within the charity and the forum but not sure how many working ones are on latter.
Long time ago it was mooted that GCA particularly came under the umbrella of VasculitisUK (I see you are already on forum) but I think politics got in the way...sure jinasc or PMRpro can fully explain.
You may find it useful to have a look at the charity's page and address your comments there -
The ambassador label is one provided by the charity - I've been a moderator, a volunteer and an ambassador at various times depending on the fashion of the moment. There are no professionals - PMRpro is my user name and is explained on my profile. I do have a physiology degree and worked in the NHS for years as well as working with my husband (who was an HCP at consultant level) in his research in vascular medicine and oxygen transport. I have had PMR for some 18 years now - hence the choice of "PMRpro".
The forum is patient-led and none of us are paid. PMRGCAuk has 2 (or 3) part-time admin staff, none of whom have any medical or science qualifications. Their role is admin - I and DorsetLady follow every post and report anything questionable to them and MrsNails also provides us with support. None of us have any official powers.
There is history about the separate existences of VUK and PMRGCAuk, put simply, in the days before VUK, the then charity which later became VUK didn't consider PMR to be a vasculitis. Not sure of their views on GCA! I'll leave that to jinasc to explain although there was already a PMRGCA charity in Scotland and a support group in England. jinasc and 4 other ladies with PMR and GCA "met" on another PMRGCA forum on the patient.info site (it was originally 2 separate forums but they were combined later) and, together with Prof Baskhar Dasgupta from Southend, set the wheels in motion. The first English charity set up was in the NE, in Gateshead, and later the national version based in the south was set up. The NE charity was wound down some years ago. The Scottish charity is still very much in action.
Honestly l’m lost for words but l understand exactly where you are coming from as l had a very similar experience with a Locum Consultant.
I was lucky that my Husband was there & a Nurse (who l happened to know) so l had Witnesses! I went straight home & phoned DrL’s Secretary & explained what had happened.
Apparently, l wasn’t the first person to complain but l was the last, he was ‘let go’ the following morning - l could have made a ‘Formal Complaint’ but l had just finished Chemo so wasn’t up to it.
DrL assured me all the Patients who he’d seen would be rung & offered an Appointment with her.
She said if l was happy we could have another call in a couple of days to discuss how l was doing, which l accepted.
He got off lightly but l couldn’t face the stress!
Thank you Angela, I did take my daughter with me so I did have a witness. She is a midwife so was able to put (when we could get a word in edgeways!) some good points up. I simply don't have the energy to go through a formal complaint process right now but it's enough that my GP and her practice (my husband heard her telling the boss about this rheumy) know and will no longer be referring patients through.
A Happy Christmas to you & yours too - because of the awful year we have been through with dear family members missing, it will be low key for us this year.
Is there a "good doctor bad doctor" site somewhere? Most hospitals do have a comments page somewhere and they will have an NHS post somewhere. If they are that rude to paying punters, the mind boggles how they treat mere mortals!!!!
I’m so SORRY. I would have been devastated by that. Report her - she should be struck off. I hope you have some loving support with you today. Putting virtual arms around you. 🫂🤗 xx💖
I DID spend a virtually sleepless night, tossing & turning but mainly being angry with myself for not walking out on hearing her opening statement! I am the sort of person who cannot react at the time - I go away & STEW!!!
I’m not surprised you poor love. You must report it to the senior principal at your GP Practice and to the GMC.. these incidents are taken VERY seriously.
I would be VERY angry! I had a head gash requiring 7 stitches through the negligence of Network Rail. It took a year on a No Win No Fee claim and I was awarded £7k. I still have a keloid scar there 10 years later. A friend who witnessed the accident said Oh don’t make a fuss otherwise the staff will get sacked!!! I was dripping in blood … the A and E department patients at the West Mid were horrified - but I was still waiting there an hour! Squeaky wheels get the oil! DONT STEW … BOIL! X
I'm just as shocked as anyone by this rheumatologist's behaviour. Not to excuse it, but it seems an awful lot like she's in the midst of a breakdown. Not just for the safety of her patients, also for her own mental health, she needs to be put on some sort of leave.
not delusions. Remember my first rheumy told me at our first consultation that you couldn't get it if you were under 50 and if so diagnosed they had got it wrong. I did correct him in no uncertain terms and got a referral to an intelligent, informed and unbiased rheumatologist.
that is awful and in uk I would complain to PALS which is patient liaison for complaints or the GMC (doctors registration council) . Have you anything similar? Some other patient may not be able to move on as you have so it would be good if you could share your experience so this doctor gets some time off ( maybe not return to work ever!) pleased you were able to see someone privately x
I suppose I’m lucky I never saw my Rhumy and only spoke to her on the phone but each time she ‘told’ me what I should be doing, never asked me how I was feeling. Told me I wasn’t tapering fast enough after 2.5 years and told me she would prescribe Methotrexate. She didn’t even realise she had never seen me. I explained gently I didn’t want to take Methotrexate and that it was my body we were talking about. She discharged me! I now talk to my lovely GP and read all the expertise on this site. I am so grateful you are all here. Thank you.
Oboes, this is howI feel now too. The combination of a good GP plus this wonderful site should be enough unless there are comorbidities. PLUS might I add, a hefty dose of PATIENCE!!!
Hi Louisa, struggling on our own I think. I was diagnosed in Feb 2020 and thought I can cope with this my mum had Lupus and I know all about Pred of course I can cope and it will only be 2years or so but then lockdown happened in March and I suddenly realised the seriousness of PMR. Stay strong. Pam
Again speechless! Why should I be? I think it’s so hard when you have to “ gear yourself up” to deal with folk like this. When you have settled down then do all you can to stop yourself and others coming away with this unprofessional, uneducated and arrogant experience. As Heron said she herself may be going through some mental problems but needs to be reported so that she also can receive the appropriate help. Well done to you that you didn’t rise to this awful treatment.
I know recently I have had quite a few medication “ reviews” from my GP practice. I think they have time to review my medication and want to put me on things I don’t want- AA, a PPI, Adcal, less steroids and statins and want to take me off the things I want Amitriptyline, and HRT patches. When you’re not 100% the last thing you need is a fight to get the treatment you require and remain relatively polite in the process!
Hope you’ve settled down now and I do think you were right at the time to not argue with her- 2 hours!!! But you now can write and complain quite unemotionally and concisely about her behaviour. Terrible too that you had to pay for this abuse!!
Thanks so much for your back up & support Jackoh. I must admit though, when I saw my GP 2 days ago I did get her to prescribe PPI for my acid stomach ( presumably from the years of pred?). It's worked like magic ......Otherwise I am with you about not wanting a drug cocktail every day.
Not only would I complain through the formal channels but I would send a letter of complaint directly to the rheumatologist. You have my heart felt sympathy.
Disgraceful, especially in view of you paying privately. I would certainly be making a complaint about this Rheumatologist! I know you were warned but that's no excuse for how you were treated.
As an example I was treated badly by a pre-op assessment nurse at a private hospital. I made a complaint and I went right to the hospitals Head of Nursing who dealt with the matter to my satisfaction. Mind you I will never go back to that hospital group again.
I saw one rheumatologist who had been drinking, he slammed my medical records violently on his desk when I said I could not take placquenil, and I left his office in tears.
One rheumatologist from our local university told me I did not have PMR/GCA. I needed to see a psychiatrist. I had slipped on the ice on the way into his office. My knee was swelling and bleeding. He showed no concern, rushed out of the office as if I was being rude by taking his valuable time. One of his interns took pity on me and asked for an x-ray for my knee. I later learned his score on the internet is 1.
One rheumatologist put me on methotrexate, which caused an intestinal blockage. She also said she did not think I had PMR/GCA.
One rheumatologist was in his 80s, should have retired years ago, and once kept me waiting in his waiting room for four hours.
One rheumatologist said I did not have PMR, I had GCA. he did vitamin IV cocktails.
One rheumatologist read the biopsy report from my temporal biopsy, and since the guy who wrote the report, wrote it in ambiguous language, he said I did not have PMR/GCA and would need to see a psychiatrist.
The head rheumatologist at the Mayo Clinic asked for my original biopsy. He said I had marked histiocytes on my cell walls and I had undertreated GCA.
My current rheumatologist has me on 5mg. prednisone for life, and Actemra. I am having blood pressure issues. The calvedilol I am on is causing vertigo and dizziness. I had a brain MRI. The MRI came back clear for strokes, infarctions, etc. but does show evidence of small vessel disease. I also have mild dilation of my Aorta, but my heart looks real good on the echocardiogram. The point is, I have all of the physical manifestations of late stage GCA. That I am not blind in one eye is a miracle because my treatment was delayed so long by medical jacka***es with more arrogance than empathy. Do not shoulder guilt or blame. Half of all doctors graduate in the bottom half of the class.
I modified an old rhyme.
Eat when you're hungry
drink when you're dry
if a doctor don't kill ya
you'll live till ya die
My present rheumatologist is great. so is my primary. But I had to go through hell to find them. Don't get discouraged, don't give up. Be your own advocate.
"Half of all doctors graduate in the bottom half of the class." - love it!
An old friend when we were at uni said he believed any student doctor who didn't get 100% in their exams should not get to graduate. Bit harsh I felt but he did have a point!
oh gosh, she sounds like my previous rheumy I had for 5 years, have new one now, should have left previous one in the first year, she was very rude and short on each visit after first year,
I am sorry that you had to deal with such a rude rheumy. During my first bout with PMR I was sent to a rheumy that refused to have a conversation with me about my condition. Instead he issued abrupt orders to me like hold out your hands. Then he proceeded to give me a prescription for prednisone and walked out of the room. He was on the other end of the spectrum where he just couldn't be bothered to talk to me good or bad. Needless to say I asked to be sent to a different rheumy. My NP told me I wasn't the first person who expressed this sentiment. Take care.
Your use of the word "spectrum" echoes my thoughts that this woman ( and all the others we're hearing about during this thread) actually ARE on the autism spectrum?
How awful! But o know those types of doctors are out there….but then again intelligent, respectful doctors exist too.
I refused to see my first rheumy after only 3 appointments. She was a power and control freak who put down my other medical professionals assisting me as not knowing anything about PMR, and she outright accused me of lying about putting my pred dose up, when indeed it was her who ordered bloodwork after a flare following her tapering advice (that was much to steep of a drop in one go) and then told me to up my dose. She later apologized but too little, too late. My bp significantly raised each time I saw her, literally.
So we must advocate for our health and hopefully you can’t engage in some sort of complaint process that will save others a similar horrific experience.
Thanks to all of the above responders! It's interesting that my experience should elicit such a barrage of similar ones - AWFUL!! My thanks for all your support. I feel vindicated and heard.....
Whenever I am referred to a specialist I always Google them first and have been fortunate to avoid paying to see someone who is incompetent or rude or uncaring. Then I research whatever it is I need treatment for as the internet is such a great tool for learning about almost anything. Mostly, though, I have learned more from this group than any other resource and am so grateful for everyone who is part of it. I am sorry you had such an unpleasant experience and I, too, encourage you to report that woman. She sounds unbalanced in addition to being incompetent.
Oh Louisa I thought I had a bad Rheumo but yours takes the cake. I don't suppose you are in Sydney by any chance? My first Rheumo was an absolutely horrible man, I couldn't believe anyone in the medical profession could be so rude and quite nasty whilst delivering a diagnosis of PMR and GCA !!! which I had never heard of before, I just knew I was very sick and in a lot of pain. So I go another Rheumo a few weeks later and sadly she can be really abrasive too, though nothing like the first one. All my other docs are lovely and I have a great relationship with them all. What is it about Rheumatologists?
That's what my lovely GP said as we both know another Hobart Rheumatologist who is off the show & only wants to talk about his overseas holidays when WE are paying for his time!
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Update on Rheumatologist Appointment
A sensible rheumatologist
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