Went to the Royal Free, Hampstead for scheduled appointment for PMR yesterday. I'm now nearly a year in from the initial diagnosis. Head of this department I originally saw privately. He gave me an injection of Depo-Medrone 120mg to see if my symptoms went away as a diagnostic tool. They did. Couldn't afford private as ongoing. It took another 5 months to see another rheumy there (someone I liked right away) and get on to their NHS list. She's been wonderful, and I was able to start the regime of the injections on the NHS with my GP who has also been marvelous. But yesterday my appt with the rhuemy I like was hijacked by the main guy there. Over the ten minutes he allotted me, he hadn't read my case notes, referred to the recent blood tests without showing me what they were and said, you do not have PMR, the blood tests are all normal. And I was practically dismissed as a malingerer. I had to put my bolshie hat on quickly, and quickly blurt out why I was there. I think I am still on the list I fought so hard to be on, but won't know until next week or week after the bank holiday. Very scary for me, and left me shaking. How can these experts be so careless?
Not a question, more a sharing : Went to the Royal... - PMRGCAuk
Not a question, more a sharing
Of course they're normal - you are on enough pred. What an unedifying experience - one does expect the senior guy to know facts, like up to 20% of PMR/GCA patients have normal range markers and that being on pred should normalise any abnormal ones ...
Thank you. It is through this forum that I've learned this. I was shocked by this top rheumy's response to me. It is arrogant and unfeeling, but also scary because it shows me how fragile the system is that can make the difference between a patient finding the best way to live as normal a life with PMR as possible, or suffer horridly. The quality of our lives are in their hands, and it is a matter of luck and persistence to find one that knows, and has the wisdom to also listen. But I think what he was telling me is that the current level of steroids administered, and the length of intervals between injections is working. I do feel much better over all. Not symptom free, but much better than before. The steroids are working on the inflammation levels successfully at this time. But I am not PMR free as he stated. I wonder if others have experienced this kind of reaction and attitude from their rheumys?
Over the years, loads! Sometimes we do say that a good GP is preferable to risking a rheumy who is unknown and may be like that.
I had 2 bad rheumy appointments. The first, early on about hand pain, she insisted was OA and so was the knee pain. She could "feel it" she claimed. 13 years later an x-ray of said knee because of pain showed nothing suggesting OA. The second wanted it to be anything but PMR but luckily he couldn't start me on sulphasalazine as I was moving here and needed a consultant to supervise it. The 3 doctors I've seen here all agree with PMR - I don't think an inflammatory arthritis would have responded to 15mg pred in under 6 hours like my symptoms did!
I forgot to say, he also glanced at the protruding painful collar bone end that has not yet been diagnosed. A PET scan showed arthritic erosions and sclerosis. The female rheumy thought it was Tietze Syndrome but ordered no tests because there is no treatment. The preds I take have a very helpful affect on the protrusion and pain, so inflammation is involved in some way. The top man I saw yesterday glanced at the protrusion and said you have osteo arthritis. I said, oh, I hadn't had a diagnosis of the cause yet. He said "you don't need to because I am giving you a diagnosis right now". That was that!
Well put, I love that 'The quality of our lives are in their hands, and it is a matter of luck and persistence to find one that knows, and has the wisdom to also listen'. You've had the bit of bad luck, now use the persistance and your resilience that shines though in this post to continue to get the treatment you need and deserve.
Nothing surprises me anymore...awful experience for you, but can relate to it....
Have been on pred 8 years and I`m at 10mg....my reading have always been low (2)even with flares......last one said..."presumed PMR"!....
Remember this:
"If my blood tests indicate normal or near normal levels, it's likely because I'm taking enough pred to control the inflammation!!!! It doesn't mean there isn't any!!!!"
Oh God how awful. The one time my Rheumatologist was away I was told that “ there is nothing special about PMR” by her stand-in when I explained why I traveled to another town to see mine.
.....but there's something very special about your (and my!) Rheumatologist! We travel "out of area" to see her!
No, nothing special about PMR - but a lot special about a courteous and caring doctor who thinks laterally when a patient struggles. PMR on its own is one thing, PMR with add-ons is another. One friend had to travel from Kent to her to get the right diagnosis - even Prof Dasgupta got it wrong.
The green eyed monster I thought.
How really upsetting for you ! I hope this gets sorted out .Nothing worse when your ill someone saying you have not got whats making you ill ! Hope you get this sorted. Thats the trouble if you get passed around !
How awful!! Maybe he is just trying to cut the list down. Whatever the reason it’s unacceptable. Your blood levels are down because your PMR is being controlled by the steroids. Let us know how you get on - hopefully that’s the last you hear from him and you’re still on the list. How annoying and frustrating for you!!!
Hi Bennijax, I do sympathise with you. I think I am seeing the same rheumatologist as you at the royal free and also privately. After 4 years I have also been told I do not and probably never had PMR. Meanwhile I am trying to get down on the steroids and am currently on 7 mgs. Four years of taking the steroids have taken their toll. I had a hip replacement 3 weeks ago and I think this could have been my problem 4 years ago. What wasted years AND I still have to wean myself off of the steroids.... I wish you well.....
On what grounds is he of the opinion it was the wrong diagnosis 4 years ago?
He said the steroids were not doing anything even when I went up to 20mgs so couldn’t be PMR.....
The 2015 Recommendations say the lowest effective dose in the range 12.5-25mg, exceptionally 30mg. It might not be PMR but it could be a manifestation of LVV (large vessel vasculitis) with only PMR symptoms - since they never looked any further than that but now they do if they have the chance and are good enough to know.
rheumatology.org/Portals/0/...
academic.oup.com/rheumatolo...
He wasn't there at the time I assume ...
There are a lot of variables too - from how much of the pred you personally absorb - it can be as low as 50% to your particular version of PMR.
I dropped my horrible rheumy after 3 appointments. During those visits I was told I’d be going on Methotrexate (at each visit), was told I upped my own dosage without her “permission” (which was blatantly untrue as she had me give blood which indicated a high CRP and she subsequently upped my dose). She also tested me for RA (negative), but insisted I had seronegative arthritis, despite my GP diagnosing me with PMR based on classic symptoms and immediate response to pred. She said ALL her patients must follow the same taper....which by the way caused my first flare because I dropped too much pred going from 15 down to 10 at her instruction. She said my orthopaedic surgeon should stick to his own specialty because we discussed my knee pain as a first symptom of PMR, something she adamantly did not agree with.
Eventually after I cancelled any future appointments, she called to apologize. Too little too late!! Now I am overseen by my fabulous GP who advises me to just aim to get to 5mg...NOT “0”. He supports me through my tapering woes and flares and my blood markers also play a role in my tapering plans (they accurately rise and fall consistent with symptoms).
We must always advocate for our health. I get a much better outcome working WITH my doctor. The mental benefits alone to be able to honestly discuss fears and successes is invaluable.
I wish you much strength moving forward as you navigate the world of medical care. Stand your ground and take concerns to the next level if need be.
Thank you!
It makes me so angry too that the so-called experts who are supposed to be helping us are so ignorant and arrogant. I think they should all be hauled up in Court and cross-examined by PMRPro until they learn some humility and some facts about PMR and GCA. I think it's the main thing that has driven me to help others, as I and so many others have suffered needlessly at the hands of idiot doctors who have done me more harm than either the PMR or the Pred ever did. Channel that anger for good by putting in a complaint or asking for an investigation of his conduct and come and help us in the charity in our fight to get patients a better deal. Also write off the bad experience by going back to the nice rheumy.
Ah Tangocharlie, I wanted to call you but thought better to calm myself! I have written a letter to the helpful rheumy, but I haven't been accusatory as I don't want her or I to get in trouble. My GP may continue to help me, I think he will. I need to write to him. Meanwhile I don't need or want to go to that clinic. From everything I've read on PMRGCAuk site, the notes I've made, the articles I've researched and downloaded, I've learned far far more about the condition how to navigate the steroids and meds. So GRATEFUL to all you on here.
Back in 2017-18 a friend experienced a senior breast cancer surgeon in the NHS who was negligent, not just with her but several other women. She made a formal complain on their behalf, and it quickly became very stressful, with a law firm involved. I don't think the case was enough to have the Medical Board dismiss him. I just do not want to expose myself to this particular rheumatologist again. Waste of time and money.
I'm now a member of PMRGCAuk and yes, I want to help the charity and help it achieve a high profile.
And maybe one day use your background and experience on the Helpline? You didn't really have plans to relax and have a peaceful retirement did you? 
You are funny, I’m smiling and chuckling, of course not! Thank you for your confidence in me!
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