Rheumatologist recommendations Norwich?

[MrsPMR]

Hi everyone - does anyone have any thoughts on recommendations for rheumatologists in the Norfolk area ( or East Anglia)? Just thinking about making a plan B…

[PMRpro Ambassador]

For PMR, Max Yates. Only him.

[MrsPMR in reply to PMRpro]

Thank you - now to try and get an appointment!

[PMRpro Ambassador in reply to MrsPMR]

Is this NHS hopes?

[MrsPMR in reply to PMRpro]

Yes - GP affable but seeing a rheumatologist seems like a priority to me. Would be willing to go private if that was the way forward. Any thoughts?

[piglette in reply to MrsPMR]

I have normally been offered six to nine months on the NHS, possibly more now, so I have gone to see someone privately.

[MrsPMR in reply to piglette]

Thank you for the info

[PMRpro Ambassador in reply to MrsPMR]

Max doesn't do private and it may be difficult to stipulate you only want to see him. My favourite who does private for PMR is Rod Hughes in Chertsey. Joel David in Oxford is scoring points too. You need one who gets the concept of slow tapers, who won't rush you off pred despite your body being unhappy - and it is worth the journey for one of them. Rod does one f2f and then video calls afterwards if you are happy

[MrsPMR in reply to PMRpro]

That’s great info thank you

[Longtimer in reply to MrsPMR]

I have seen Dr Max Yates, excellent doctor. You can discuss anything with him....he will do lots of tests too if needed. I asked my doctor that I specifically wanted to see him....Good luck.

[MrsPMR in reply to Longtimer]

Thank you - we’ll ask next week and hope for the best.

[Longtimer in reply to MrsPMR]

Good luck keep us posted.

[marionofnorwich in reply to MrsPMR]

I am in Norwich. Max Yates doesn't do private consultations. I was referred to him as I asked my GP to refer me to him and also emailed his hospital email address so that the two end of the referral linked up. This was after over two years into my PMR diagnosis as the GP wouldn't refer before that (as is policy I believe) and coincided with a flare. In truth, there hasn't been much he can do. He wanted me to go on a biologic trial but I wasn't accepted. He was helpful in getting other referrals that I needed (knee and, it turned out gynae, for a longstanding fibroid I thought had gone away). He is very easy to talk to and thorough. I haven't seen him for a while but can communicate via email and would probably see me if I asked. Personally, unless you are having actual problems (over and above the usual PMR reducation journey) I would ask for a referral to him and wait

[purplesprouting]

Hi, I am with max Yates for PMR at Norwich hospital......he is brilliant, very caring. Good luck 🤞

[MrsPMR in reply to purplesprouting]

Thank you - good to know.

[Angelsmummy]

I see Dr Sykes at West Suffolk Hospital.It was him put me forward for TCZ.Also I told him I wanted to stay on slow taper as recommended by this forum and I think he is beginning to listen to patients wishes.Always very accommodating regarding phone calls and listens .Get regular check up phone calls from his team.Good luck!

[MrsPMR in reply to Angelsmummy]

Thanks for the info - will keep it in mind - really helpful.

[Hirondelle]

hello from another east coast (Suffolk) PMR and now adrenal insufficiency member of this wonderful forum. Perhaps too far for you but I found a lovely rheumatologist at the Ipswich Nuffield Hospital . Referral on the NHS took over a year for an appointment. My private rheumie us Dr Anita Weerakoon . She is very holistic and checks you for everything . £150 per hour and very well worth a visit. Good luck

[MrsPMR in reply to Hirondelle]

Hi Hirondelle - thanks - that's really helpful. At this point I think we're willing to do what it takes to understand more about MrPMR's condition and we're looking into private options. Recommendations gratefully received.

[Longtimer in reply to MrsPMR]

Dr Yates will answer all your questions, he teaches at UEA medical school, and researches into PMR, he had a student in with him at my last appointment....worth waiting for!

[Nagswoman]

Does Dr Chetan Mukhtar still see patients at Norwich?

[PMRpro Ambassador in reply to Nagswoman]

As far as I know.

[Horses1234 in reply to PMRpro]

yes he is in Norwich and has a lady that works with him Sarah ? ,who is very thorough too

[PMRpro Ambassador in reply to Horses1234]

Thorough possibly but holds the now rather outdated view that PMR comes in one version, lasts 2 years and poof, is gone. Also believes that in that 2 years you can taper pred according to a fixed schedule and if the pain returns, it isn't PMR.

[marionofnorwich in reply to Nagswoman]

My friend is under him. I will ask what he thinks but as PMRpro says, I believe he sticks to a regime of reduction. I haven't seen him myself

[GreatGranny4]

Hi, I was referred to QMC Nottingham in December 2023 and saw Dr Peter Lanyon in January, it was approximately a 4 week wait on NHS. He was very thorough and understanding and booked a PET scan for me as I was having problems tapering from 10mg to 9mg and had tried 4 times.

We were going to Australia in February and he was hoping I would have the scan before I went, unfortunately they rang me with an appointment for the day we were due to fly, however while we were in Australia I received a phone call giving me an appointment for two days after we arrived home. Following the scan on 29 April I received a letter on 3 May with an appointment for the 13th and I had been put under Dr Mohita Damamy who has just been made a consultant, she was lovely and very understanding, the scan results were ok so she suggested I try again so on the 14th I reduced from 10mg to 9mg and hopefully all is going well!!

I realise Nottingham is probably too far for you travel but Dr Damamy does podcasts on PMR too which you might be interested in.

[MrsPMR in reply to GreatGranny4]

Thank you for the detailed answer - it's all really helpful!

[Scaredofpred]

I am from Norwich too. Quite a few of us on here recently.

Is there a local support group please? Or enough of us to form one? ( hope it’s ok to ask).

[DorsetLady PMRGCAuk volunteer in reply to Scaredofpred]

One in north Norfolk -

pmrgca.org.uk/author/north-...

Always worth considering setting one up- contact the charity’s-they’ll advise ,

[tempusfugi in reply to DorsetLady]

Just to let you know, I have tried on several occasions to contact this group to no avail. They don't seem to be answering phone calls or emails. Penny Denby of the WedPM Support Group is following up for me.

If you Zoom, Scaredofpred, you could join this group. It meets on the last Wednesday of the month and Penny would, I'm sure, add you to her list. Her contact is [e-mail]

If you do hear of another group in Norfolk, or you form one, I would be grateful if you'd keep me updated. Many thanks. tempusfugue

[MrsPMR in reply to tempusfugi]

Will do tempusfugi!

[DorsetLady PMRGCAuk volunteer in reply to tempusfugi]

You’ve replied to me, but MrsPMR has seen and answered.

[DorsetLady PMRGCAuk volunteer in reply to tempusfugi]

Might be worth contacting the charity and advising issues, they have been looking at local groups lately - maybe send chat to Sophie -

healthunlocked.com/user/Sop...

or try emailing her - [e-mail]

[tempusfugi in reply to DorsetLady]

Thanks vm, DL. I will try once again before following through, as it's a while since I did so but their web page hasn't changed for a v long time (where it says 'Our next support group meeting will be confirmed soon.'

[DorsetLady PMRGCAuk volunteer in reply to tempusfugi]

That’s never good is it? The East Dorset one has recently been revived… so maybe your local will be as well.

[MrsPMR in reply to Scaredofpred]

Hi Scared of Pred - I'm just getting to grips with things, it's all new to me at the moment. However, once things have settled down for us, perhaps a few weeks/months down the road, then I would be interested in setting up a support group. I'll make sure to revisit this is idea and then we can arrange something.

[PMRpro Ambassador in reply to MrsPMR]

It doesn't have to be an official group and doesn't have to involve booking a venue - just 2 or 3 people can meet to have coffee together and chat to start with in the same way loads of people do.

[Scaredofpred in reply to MrsPMR]

Thanks MrsPMR. I’m fairly new too, diagnosed end of March, it’s a big learning curve and adjustment!

Would be happy to look at starting something with help, but also happy for “ coffee dates” too, have found the forum so useful as a sharing / info source. Now that my Pred has kicked in people keep telling me how well I look! Actually I generally feel well too, but the underlying issues are still there.

I live in Brundall!

Hope you are ok.

[Rugger in reply to Scaredofpred]

Two of us started our group simply by finding a cafe where we could meet. We put a post on here and the rest is history! The meetings are usually "coffee dates" with exchange of ideas and experiences. Choose somewhere near to you, so you don't have to travel too far! (That's the advice that Penny gave us!)

[Rugger in reply to Scaredofpred]

Certainly OK to ask! If you start one in Norwich, you could catch people in north Suffolk too. I believe the group in Woodbridge has stopped meeting. (email [e-mail])

I and another member started the Yorkshire group in 2017, as there was nothing up here. Good Luck!

[tempusfugi in reply to Scaredofpred]

Scaredofpred, please see my reply to DL. Part of it is for you!

[Scaredofpred in reply to tempusfugi]

Thank you!

[Rugger in reply to tempusfugi]

See my reply to scaredofpred re "coffee dates"!

[tempusfugi in reply to Rugger]

Many thanks for your comment, Rugger.

[marionofnorwich]

I do know of a few people in Norwich and nearby with PMR. I am near Trowse myself.