Please can anyone recommend a Rheumatologist in the North East - I live in Northumberland. I am prepared to travel as far as Leeds to the South and Edinburgh to the North. I was diagnosed with PMR in October 2020 and my GP said that he could manage PMR. Along came Covid and that didn’t happen. I did see Colin Pease a Rheumatologist in Leeds, privately, a year ago. The first time I saw him he seemed very pleasant and reassuring but the second time he said that I no longer had PMR as my bloods were normal and virtually blamed the voluntary work that I was doing as the reason I was still in pain. 🤔I am waiting to see an NHS Rheumatologist but understandably this is a long time happening.
Sorry for the waffly story but I’m currently feeling like a ship without a sail!
Many thanks to you all for your very reassuring posts.
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Ashington52
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I'm in Scotland. I have normal bloods. I respond well to steroids. I've now seen four rheumatologists (2 NHS & 2private) in four different regions. I still have no treatment and little quality of life. I am in no position to recommend any Scottish rheumatologist, yet.
Thank you for your reply. Last time I was on steroids, I managed to travel to a funeral in England. I was surprised to discover that many people down south think the NHS in Scotland is in much better shape. Trust me: it isn't. GP surgeries in towns and villages are closing down, appointments are hard to get, waiting lists are terrible, and they only want to treat routine cases. Disappearing quality of life - and maintaining the ability to work - count for nothing. And that's despite the NHS budget per head being much higher in Scotland! Those of us who can't get treated are supposed to feel grateful that the medicines we can't get are "free" of charge! LOL!
Small world! Arbroath and Aberdeen. They were my first two rheumatologists (both NHS). All I got from the first was "I'm [only] prepared to diagnose you with RA", despite the fact I have no diseased joints. The second one concluded I "don't have an inflammatory disease." My GP relayed this to me. When I asked why I respond so well to prednisolone, even getting more relief the more I'm on, he added "everyone feels better on steroids". I was refused any more treatment, so I used up the remaining prednisolone in my drawer to plan one final, 3-month course including a proper taper. I got excellent relief after the first 20mg dose, had a lovely foreign holiday, and caught up on some DIY and gardening over the summer. A few days after my last 1mg, it was like I'd never been on them. That was last autumn. Getting up, showered and dressed by lunchtime is about my limit, these days. The pain, stiffness, and fatigue has recently spread down my arms to my hands. They cramp when I do light tasks.
Hum - then you haven't seen someone in Dundee? Your GP needs a reality check - if I had a fiver for every time I'd heard that chestnut, and from some who should know better, I could have a darn good dinner out!If you have PMR, you feel better on pred BECAUSE IT TAKES THE PAIN AWAY, What a novel concept!
What you are describing is absolutely typical of PMR - or at least, a pred-responsive myalgia of the same sort I have. I had 5 years of plonkers being mystified - until I spent a few months here skiing - not joking, the flat has no stairs, and that made a massive difference. I took the skis and boots to the storage at the bottom of the lift and managed to drag myself up to the bus in the village and then to the top of the lift, I could just manage to get down the shortest, simplest run and after that it got better, Skiing hip action has a miraculous effect on PMR. In the afternoons I surfed the net and eventually had a lightbulb moment when a GP mentioned on his blog that he had just seen Mrs Brown and his suspicion of PMR had been confirmed by her response to 15mg pred, The same happened to me when an rather arrogant rheumy in Co Durham gave me 6 weeks of pred to get me through a business trip to the US. When I came back he wasn't in the least interested in my diary of pain going in 6 hours and being back in 6 hours without pred. But luckily a different GP in the practice who I had never seen as she had been on maty leave and part time otherwise and was incredibly popular, recognised typical PMR and treated it as such. I now have a leading PMR expert (in the world) who has never argued with the diagnosis.
A GOOD GP should be managing you on the basis of the clinical picture. A GOOD rheumy would investigate properly - since you aren't on pred they could nicely do a PET-CT and THAT would show where the inflammation is sited, IN the joints or AROUND them and that sorts the sheep from the goats. But maybe they are scared they will look silly ...
The Tayside NHS rheumatologists are based at Ninewells Hospital in Dundee, but they hold clinics at local hospitals such as Arbroath and Stracathro. The first rheumatologist I saw was a member of that team. The second NHS one I saw specialises in vasculitides and had recently moved from Glasgow to Aberdeen. All I got from him was a PET/CT scan which showed nothing of significance. I then saw a private GP who referred me to a private rheumy (my 3rd) in Edinburgh. He basically said "if you've already seen Dr X in Aberdeen, there's nothing more I can do for you." My private GP then referred me to another private rheumy (my 4th) in Glasgow, based on the fact he'd heard he believed in PMR with normal bloods. That was 7 weeks ago and he gave me hope (see below).
I'm certainly not a classic case of PMR. Firstly, I'm quite seriously atopic, but my blood tests, including CRP, ESR & ANCA, are normal. I've suffered steadily worsening morning stiffness, easy fatigue, muscle pain and muscle weakness all my life, especially in the upper back and shoulders. I've had no choice but to endure and adapt, until it became unbearably debilitating in my mid-50s and I begged to try oral steroids.
My 4th rheumatologist recently said he's prepared to treat me based on what we already know, but wanted a few more tests first. He discovered I have 0.12nmol/L of anti-AChR antibodies in my blood. At higher titres, these are implicated in myasthenia gravis (MG), so he swiftly referred me to a Glasgow neurologist, who discovered I've lost all my tendon reflexes. This suggests chronic inflammatory demyelinating polyneuropathy (CIDP), so he is trying to arrange urgent nerve conductivity tests somewhere. I'm not holding my breath because I do not have the symptoms of full-blown MG or CIDP, so I suspect the nerve tests will be inconclusive at best. Then I fear I will find myself back at square one, despite the fact that PMR, MG and CIDP are all autoimmune diseases that respond to prednisolone!!!
If you had a PET-CT when you weren't on pred then the chances of it being PMR are actually pretty low since it would show the regions that are inflamed in PMR and causing the symptoms. PMR is not the disease - it is the name given to a constellation of symptoms which are caused by a selection of underlying disorders, some autoimmune, some not. PMR is a diagnosis of exclusion - you rule all those out and that leaves PMR.
ANY level of anti-AChR antibodies is abnormal - not just higher titres. And it is a particularly specific test.
I think your 4th rheumy is doing a decent job to be honest. The fact you have had low level symptoms all your life really does suggest this isn't the PMR we talk about here. You don't have to have the full-blown clinical picture of anything for that to be the final diagnosis.
I took my last 1mg two days before the FDG PET/CT scan. I also researched how these scans work. They will reveal raging inflammation (see image), but it's a myth that they'll show up every last bit: the truth lies somewhere in between. The person interpreting the image adjusts the contrast until the liver looks light grey. Any vessels that look darker are deemed inflamed; any vessels lighter are deemed normal. Organs that consume large amounts of glucose even when resting show up black. I never expected my scan to show vasculitis. Any damage to my vessels has occurred slowly, due to decades of atopy.
I agree re anti-AChR antibodies and full-blown diseases. Unfortunately, the NHS considers anything below 0.25 (or even 0.5) nmol/L as normal! No foreign paper or website seems to think so. I will pursue this, if necessary.
An FDG PET/CT scan image showing severely inflamed arteries in a patient with vasculitis.
Indeed! That has crossed my mind many times! Perhaps I would, if the side effects of long-term oral steroids were not so bad, and I wasn't desperate to know what's caused this torture all my life. If it turns out (from the anti-AChR antibodies) that I have an unrecognised form of sub-clinical MG, I dream that it might be controllable with low doses of pyridostigmine, which boosts acetylcholine (ACh) but is not steroidal! Some hope, eh?
My Rheumatologist couldn’t be better, she is a leading light in our diseases and is involved in research projects. She is very patient centred and empowering. I don’t know what her availability looks like. I see her at Leeds st James, Hospital or more usually Chapel Allerton Nr Leeds where there is even a Vascular Scanning machine. Google the contacts.
Good luck in your hunt, having a good one makes all the difference. PMRPro recommended her to me and I travel to see her.
Thank You so much Sheffield Jane. My daughter actually lives in Chapel Allerton. Is this Rheumatologist called Sarah Mackie by any chance as I have heard excellent reviews about her. If this is Sarah I was told that she didn’t see patients privately?
Gosh sorry! Yes it is Sarah Mackie, she’s lovely and very on the ball. I believe she spends a significant amount of time on research, so I don’t know how successful a GP referral would be. She doesn’t do private work. My GP grumbled but I persisted and he relented. A Rheumatologist who doesn’t “know” PMR/ GCA/ LVV is much worse than useless.
Having read so much about Dr Sarah Mackie, I emailed her, explaining my normal-bloods situation and requesting an appointment. She kindly replied, saying she does not work privately, but suggested a colleague of hers in Leeds. I made an appointment but later had to cancel it: denied steroids, I had become too weak to travel so far in the mere hope he'd be as good. I saw a private rheumatologist in Edinburgh instead, and he was useless.
Nothing wrong with the department in Gateshead - especially Vadivelu Saravanan, MRCP who was heavily involved with the PMRGCANE charity before it was wound up a few years ago. There are other good ones there but I have drawn a blank looking for private options in Newcastle. I assume you want a private option?
The next further south I would suggest is Michael Plant in Middlesborough who was also a great supporter of the local PMRGCANE group and does private work.
I see an NHS rheumy from South Tees, Dr Shikoh. He's very nice, but is convinced I don't have PMR because when I saw him for the first time, it was 10 months after my initial diagnosis by the GP and the 15mg of Pred had made everything so much better. He also thinks at 59 that I am too young. I have had numerous scans, investigations and blood tests because he wants to prove it isn't PMR and that I have something else. I'm now down to 4mg, have been diagnosed for over 2 years, my medical records still say "presumed PMR" and he's sending me for another scan next week. If you're over 70 and have PMR, then I would recommend him, if you're my age then I would keep on looking . . . . good luck!
Thank you all so much for your very helpful comments. I’m only going down the private route as I’ve been on the NHS waiting list for such a long time. I like you PMR pro looked for a Rheumatologist in Newcastle but draw a blank hence seeing CP in Leeds!
But Mike Plant in Middlesborough was closer!! And honestly - I do recommend him. So does cycli Unlike CP he listens and doesn't feel threatened when the patient questions things.
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