Rheumatologist Yorkshire?

[caz3333]

Hi, please can anyone advise me of a rheumatologist they are seeing or know that they are really good. I am willing to pay and go private as getting nowhere through NHS. I have heard of a Professor McGonagle who practices in Elland, West Yorkshire. I am at my wits end with this PMR as oral steroids do not seem to be working now and every day is becoming more of a struggle. Any advice re a good rheumatologist would be appreciated. Thanks.

[Celtic PMRGCAuk volunteer]

Caz, probably about a 45-60 minute drive for you, depending whereabouts you are in Yorkshire, but there is a highly recommended rheumatology professor in Leeds with a special interest in PMR/GCA. You can look her up online - Dr Sarah Mackie.

[caz3333 in reply to Celtic]

Thank you Charity appreciate your reply and I will look up her details. I have heard that Prof McGonagle is also good but a recommendation is always ideal. Many thanks. X

[PMRpro Ambassador in reply to caz3333]

Would have been the same from me - one lady travels a long way to see her! It is a multidisciplinary and research group so they look at other options besides "just" PMR without simply saying "no, it isn't that, you need another speciality"

The rheumatology group works out of Chapel Allerton - Prof McGonagal does too but his special interest is different. Dr Mackie is more specifically PMR/GCA so her group would be a better option I think.

lmbru.leeds.ac.uk/people/ou...

PS - she doesn't do private work I don't think but you can tell your GP you wish to be referred to her and there is no reason why you couldn't contact her yourself by email.

[caz3333 in reply to PMRpro]

Hi PMRPro thank you for your reply which I appreciate very much. I will make some enquiries and see where I can go from here. I wI'll speak to my gp as soon as possible. Many thanks.

[Polywotsit PMRGCAuk team member in reply to caz3333]

Hi - Prof McGonagle is a research immunologist who has been looking at some of the aspects of PMR. He is brilliant, but SM is the one to look out for. She has a very good understanding of what PMR sufferers go through, especially relating to symptoms like fatigue, that not all doctors 'get'.

[caz3333 in reply to Polywotsit]

Thank you Kate for your reply, I have made some enquiries and got the ball rolling so to speak and will hopefully get to see one of them soon. Blood tests are back today showing as borderline which doesn't surprise me the way I am feeling at the moment! Like you say, it's the fatigue and general debilitating symptoms of PMR that grinds you down which most of us put up with as we get used to it being normal for us! Then when we have a flare up it just makes everything so much worse and this time it really has got me down & depressed.

[Hidden]

PMRPro, may I ask what you mean by "Rheumatology group"? Sounds like a bigger operation? Caz3333, good luck. Prof M looks quite amazing, too..must be a tough decision to make.

[caz3333 in reply to Hidden]

Thanks Coniston I am seeing Prof M this Saturday and really hope he can help & guide me as to where to go from here. The steroids are clearly not working now, been on 20mg for the last 2 weeks and feel worse every day and no painkillers are helping. I am scared as its out of control and not like my usual flare ups in the past.

[Hidden]

That sounds utterly wonderful and exciting, caz3333 I hope your flare would be sorted out by this specialist very soon. I have seen Dr SM so please feel free to PM me if you need any info. Good luck for Saturday

[caz3333 in reply to Hidden]

Aww thank you Coniston I am feeling a bit brighter knowing I have an appointment with an expert! I will let you know how I get on by PM, I have read about Dr SM but unfortunately she doesn't see patients privately and my NHS referral will probably take a few weeks!

[Hidden in reply to caz3333]

Fantastic, caz333 Please, do Looking forward to your Good News Yes, nothing beats a private appointment with the internationally renown Rheumy Dr. Thank you for sharing. Best Rgds, C.

[sealine30]

I see DrM as part of her trial group and she and her team are brilliant, she is only ever an email away, a bit like this great group😊 I have been on pred now for a year and am at my lowest cycling between 7 & 8mg on alternate days, and although my joints seem to know the difference, it is not o bad that i need to tae a step back. Im not sure that I have a diagnosis of pmr as i have only ever had a handful of the markers but it is always written on my notes as steroid responsive myalgia

[caz3333]

Hi Sealine that sounds like you have things fairly under control. At the moment I can only dream of getting below 15mg prednisolone and remain fairly pain free. I am unable to do any kind of activities other than walk the dog as my legs are usually fine with only the occasional flare up affecting them. I can't garden or do anything at my allotment anymore I can just sit and read and watch tv after doing my 25 hrs a week job. I used to like swimming but that's impossible, the pain of getting dressed and undressed for starters! I can only hope that Prof M can help when I see him. I am going to have to use all my savings for a summer holiday to pay for everything private as an urgent referral to see a rheumatologist on the NHS is anything but urgent. I am trying to remain as positive as I can after reading Kate Gilbert's excellent book and doing things she recommends with diet, pain relief etc but for nearly 3 years I have not had any useful input from the gps to help me or seen a rheumatologist and my worry is that I have been taking far too many steroids without properly managing what they have been doing to my body and wonder if this can ever be reversed now. Fingers crossed I will soon start to feel better & good luck with the lower dose of prednisolone.

[Hidden]

Since I live in the North, this thread has been a breath of fresh air. It's always very useful to know positive feedbacks of Rheumatologists in the area. Thank you, caz3333. If you have any specific things to be done or the results you are looking for here and now, I agree that seeing a consultant privately is going to be money well spent. Without health, we cannot do things we need / want to do (and that would be a problem). Interesting to hear about DrM as well. Never heard of her "trial group" before. So that's new, thank you for sharing, sealine30. Seems to be a lot of things are going on in that unique hospital. One would assume that everything happens in London, Oxford or Cambridge. I learned that that's not true.

[caz3333]

Hi Coniston I couldn't agree more about being able to do the things we want to do as without health life is not the same. No amount of money can make you feel better! I wish there was a support group in Yorkshire but sadly there isn't. If, and when, I start to improve and feel a bit better I would love to help set up a support group in my area as it really helps to speak to other people with PMR. The trial group at WGH sounds promising and like you say makes a change for something like this to be going on up North! I will let you know how I get on when I see Prof M.