I want to find an empathetic & knowledgable consultant rheumatologist who understands PMR not only from a clinical point of view but also from the patients. Someone that will NOT just say that I have to reduce my Predisolone when I can hardly walk/crawl around first thing in the morning.
I live in Central London but don't mind travelling a bit if it's the right person. If anyone has any names they will be gratefully received. I guess they don't need to be a rheumatologist, but a very well informed doctor.
Many thanks.
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Purpleprimate
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I see Dr Hajela at the Chelsea outpatient centre. He works in other locations around London too. He is excellent. When I was first diagnosed, I saw another rheumatologist who just stuck me on steroids and left me to it. I’d had one blood test and no other testing. At the time I was 52, so he should have ruled out other conditions before doing so. After 4 months, I changed to Dr Hajela. He ordered more scans (including a pet ct scan) to rule out everything else and only then settled on pmr. As I was intolerant to steroids, he worked with me to find other ways to manage the symptoms. He recognises that my low inflammatory markers did not reflect the pain I’d been in. He has recently retired from the NHS (he was with the Sussex/Brighton trust) but he still works privately. Hope that helps and good luck.
thank you. I am managing it quite well most of the time. I’m about to finish a msc in nutrition so that has helped with diet and lifestyle strategies! I’m back doing 20 minute spin classes and 5 minute weights (500g weights only!), walking every day too. Sleep, and sugar are my main pain triggers so I try and keep on track with that. Good luck, Emma
Dr Hajela is wonderful. I’m so sad that he’s retired from the NHS. I can’t take steroids either so I’m basically bedridden. What did he suggest to help you? I’ve lost all faith in my rheumatologist in Brighton. I can’t see why I can’t have monthly steroid shots as I don’t get the side effects with those. My rheumatologist wants to start me on Methotrexate, which is extremely toxic. I just don’t get it. Thanks!
hi there, I’m so sorry to read this. It’s so tough. I had a call from an Sussex trust locum this week who said that they are recruiting a new rheumatologist. Hopefully they may be better. Why won’t they give you monthly shots? Maybe you could find out the relative costs of both steroid tablets and the shots and compare them. If they are both cost effective, you could ask to have the shots then. Just a thought. What do I do? Like many others on here, I eat an anti inflammatory diet. No refined carbs, some supplements, gentle exercise, early bed times, only red wine once a week. And stress management techniques centred around breathing.
Try Huw Beynon who works from Devonshire Street and St John and St Elizabeth’s. He has been very kind to me and a friend with serious GCA. He told me the most important thing was to be well! You will find his details on Google
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