I am moving from Guernsey to York next April... House is sold and the move is on... A move that takes us closer to some of our children and grandchildren so we are looking forward to it. My question is, does anyone know of a good Rhemy in York? I have been told by my Rhemy here that Barcitianib which is one of the drugs I am currently on is only prescribed by a Rhemy and not a doctor so I do need to find one fairly quickly. Any help or advice would be appreciated.
P.S. currently doing well with my latest reduction... now on almost 4.5 mg of steriods... not been that low for a while. Looks like the combination of methotrexate and Barcitianib has made a difference for me.
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Mamamia21
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I don't know if you can request a specific rheumy anywhere these days - I have enquired about the supply at York! They do have a protocol for GCA in their EDs with York being the main centre.
However - you could TRY to be referred to Prof Sarah Mackie in Leeds, you really won't get better than her for PMR/GCA but it may be rather a wait which you can't play with. Another goodie is Mike Plant at James Cook in Middlesborough which is about an hour - he did a lot with establishing the local support group though I'm not sure if it still runs. cycli on the forum has seen him.
Using a Janus kinase inhibitor in PMR/GCA is very unusual - I hope the rheumy you are transferred to is willing to continue with it.
Dr Sarah Mackie is well worth travelling for. She is my Rheumatologist and she really understands our diseases. In fact she is a leading light who is involved in the research. I am not on Barcitianib though. If she thinks it will help she would prescribe it. She is a great proponent of Methotrexate though. I feel in very safe patient centred, hands. I travel from Sheffield to see her.
Would your current Rheumatologist be able to refer you to someone who is of a like mind, who will continue your prescription and care plan.?
Thanks for the recommendation SheeffieldJane. Unfortunately the system in Guernsey does not allow for referral from here...and my current Rheumatologist does not know anyone in York or surrounding area. I have been given a couple of extra months to keep me going until I find someone so will hopefully I will find someone in that time...
Sarah Mackie is also my Rheumatologist and I echo all that is said about her on this forum. However, she works part-time in the NHS (and part-time research) and doesn't do private work. I had to wait 6 months for my first appointment with her and that was pre-Covid.
Do join the Yorkshire support group - we meet in various locations across the county as it is so large - Ilkley, Sheffield, York and sometimes Leeds.
Hi PMRpro, thanks for the reply and suggestions. The reason I am now on Barcitinib is due to some kind of arthritis which I assume its for... This mixture seems to work for me so hopefully I will find someone who is willing to prescribe it... otherwise I may be starting from scratch again... Lets hope not.
If it is a diagnosed arthritis it shouldn't be a problem. I have asked my daughter who works in the Scarborough and York Uni Hospitals Trust and she will speak to the ED consultant in the morning (if she remembers, I will prod her!) about who he would suggest. Where will you be living?
Not somewhere that floods I trust!!!! If you are living there obviously you would be much better with someone there. If you were in the country around somewhere else would be fine.
tells you a lot about their set-up. The site seems a bit cumbersome, I can't find a way of working through the blue list besides always going back to this page and clicking on the next in the list.
Hope you have warm undies for the winter - York isn't as warm as Guernsey!!!
All good, no flood risk where we are... I can't say I am looking forward to the colder weather but we are originally from the North East so should not take too long to toughen up again 😂.
Thanks for the link, very useful... will start working my way through the lists 😊.
Hi PMRPro, a little while ago you said your daughter could speak to the ED consultant... did she remember? I have just phoned York hospital and left a message but don't hold out much hope that they will call me back. Just thought I would try this route before I started looking for private Rheumy's that might help.
At the time he wasn't in so that got nowhere just then. I thought they might have contact from when they get ?GCA patients but apparently not and she doesn't know the rheumies there. Her husband needed a rheumy appointment and they chose James Cook in Middlesborough as being preferable as they live similar distances from both. The wait was well over a year though. If I were you, I would seriously consider Mike Plant there - I think he does private. I know it is a bit of a jaunt but worth it for someone who listens and will discuss things. I think cycli found him very approachable - could be wrong.
sorry sent message before I realised you had replied... Thanks for getting back to me... apparently if I can get a Dr's feral they will proscribe Barcitinib as long as I have a proof from Guernsey without seeing me. I can wait to see Rheumy I just need the prescription 😊. Now to see if I can find a doctors who will add me to their list.
That is great!!!! That may be a useful bit of info for me in the future - I will eventually have to come back to the UK and one of the things keeping me here is being on tocilizumab/Actemra!
Hi Mamamia, I’m sorry to say that our experience of the rheumatology dept at York hospital isn’t good (we live just outside York itself). My partner has had pmr for almost three years and is doing pretty well (currently reducing from 4mg to 3.5mg of pred) However, he’s done this almost entirely on my advice, with all my knowledge gained from my daily reading of this wonderful webpage. He has seen a rheumatologist twice, neither time was any help as it appeared we knew as much (or more) than he did. The last contact was a phone call where it was agreed my partner was doing well and would carry on reducing. I would also add that our GP surgery has almost been equally as useless but as long as they keep giving the repeat prescriptions without a fuss we’re not complaining. Good luck with your move - we love York so am sure you will too! Hopefully PMRpro’s daughter will come up with a helpful name or two for you 🤞
Thanks Fudgethecat, yes I too have mainly managed on my own thus far. I only need the Rheumy to agree to prescribe the current drugs I am on so hopefully with my letter from my current Rheumy in hand all will be ok... Only time will tell...
Yes, really looking forward to our move... York really is a lovely place 😊.
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