London rheumatologist

[Sefu]

Hi I am in a panic on behalf of my Mum who is 92 and last week diagnosed with GCA. Eye clinic at local hosp. agreed they weren't the right starting point (no eye symptoms) and that GP under prescribed pred. I asked for next place to be St Georges, Tooting on basis of some google research, but the person I thought might be ideal rheumtologist isn't there anymore. Does anyone have great experience with a consultant there I can try to select or a brilliant experience somewhere preferably Croydon/South London, but prepared to travel further to achieve best outcome. Thank you!

[SnazzyD]

What a worry. The best course of action can be better judged if you say how much Pred she is on, what symptoms she had and what she has now. Generally, if she has uncontrolled GCA it is a medical emergency not a slow road to the Rheumatologist.

[Sefu in reply to SnazzyD]

Hi Thanks. Two responses below with further info.

[PMRpro Ambassador]

Are you looking for a private consultation?

GCA is a medical emergency so the initial management is the crux. That just involves high dose pred - I assume they have done that? After having the correct diagnosis and treatment to start with it is really more a case of finding a doctor who will listen and not argue about the diagnosis or try to get her off pred too quickly.

Please tell us rather more about what happened and how the diagnosis of GCA was arrived at if she had no eye symptoms. Pred dose and ongoing orders are also important.

[Sefu in reply to PMRpro]

Thanks. Mum had non stop headaches often severe 24/7 sometimes, then look like going away, then back again. We waited 2 whole weeks. GP did blood test which I think indicated high ESR but not much else. Please see below to Yellowbluebell with bit more info.

[SnazzyD in reply to Sefu]

Just so you are not fobbed off, there isn’t a GCA test so usually, but not always, raised ESR and/or CRP is all there is. This just says there is some inflammation somewhere in the body and can be used in conjunction with symptoms to diagnose GCA. Usually, headaches with raised ESR is enough to trigger a high dose regime of Pred. My Pred was started on symptoms alone and the GP sent me straight to A&E before any bloods were done. I was put on 60mg Pred for a few days then 40mg for 6 weeks before reducing the dose. The reduction you’ve stated sounds a bit reckless and I’d like to know what guidelines were being followed.

[Sefu in reply to SnazzyD]

ok thanks ! Will push tomorrow.

[Yellowbluebell]

Got to agree with snazzy, your mum needs an urgent appointment NOW. We hear too many sad stories on here of people.losing sight due to gca not being treat promptly and properly. A &E and see rheumy there. Snazzy has asked you for details which will help us help your mum. It does make a difference to how we can help of we have all the details. YBB

[Sefu in reply to Yellowbluebell]

The GP put Mum on 30mg Pred until supposed to see eye unit. By Tues. I had to call GP as Pred about to run out and no contact from hosp. eye unit. Then Eye unit contacted same day and Dr on phone agreed that eye unit wasn't right starting point as no eye symptoms AND that, as Mum weighs 7.5 Stones, the concept of starting with high dosage should mean 40mg and then from this Monday we should taper down to 30mg for 1 week, then taper 5 mg down to 25mg and go down in 5mg steps from there. Now we're on our own just with that guidance until see rheumatologist as yet unknown time.

[PMRpro Ambassador in reply to Sefu]

No, that taper is far too fast. She needs to be at 40mg until there is no sign of her symptoms at all and usually that would mean for a month. Then if she is still OK at 30mg, stay there for a month.

This may help you and the GP:

rcpe.ac.uk/sites/default/fi...

I can't believe they haven't referred you as an emergency! They wouldn't do this with a stroke or heart attack - and this is the same principle.

You could maybe call the emergency eye clinic at Moorfields and ask for advice.

[Yellowbluebell in reply to PMRpro]

And once again ignorant doctors and hospitals and eye departments. God when are they going to learn?!! YBB

[PMRpro Ambassador in reply to Yellowbluebell]

The twit who failed to diagnose me told me much later that the woman in the practice who DID recognise it had taught him how to use google. Obviously it should be part of your induction process in a new hospital ...

[Yellowbluebell in reply to PMRpro]

I thought the treatment of mental health patients was a big enough thing for me to try and remedy in my own little.way but the lack of skill in diagnosing pmr and gca scares the living daylights out of me. I just dont know why doctors are.so ignorant to something that can blind someone and.does on to regular a basis. Will they only learn when they have got someone like DL in their practice?

[Sefu in reply to PMRpro]

Hi ok thanks! See what I can do with telephone calling. Have to say I am not a fan of the GP system ... have always felt that we train them and then limit their function to going on for useless.

Should I be more interested in seeing a rheumatologist or the eye unit after all ?

[Yellowbluebell in reply to Sefu]

A rheumatologist should be able to organise everything so if you were to see one at A&E he can refer. Or.if you see one normally the same applies. YBB

[PMRpro Ambassador in reply to Sefu]

They may be able to recommend a protocol - I would have expected a decent eye specialist to have taken on a patient with GCA until they could transfer their care to someone capable. Moorfields MUST see GCA patients - it would be the obvious place for patients with visual symptoms to go first. Then they must have a protocol they follow - especially for local patients.

I'm just so concerned at you being told to reduce the dose so quickly.

[Sefu in reply to PMRpro]

Hi Could you please add full link ... seems cannot follow it. Thanks.

[PMRpro Ambassador in reply to Sefu]

I don't know what HU is playing about at - that's about the 3rd link today that worked when I poste dit and has disappeared:

Our approach to the diagnosis and treatment of polymyalgia rheumatica and giant cell (temporal) arteritis

V Quick, JR Kirwan

is the full title

rcpe.ac.uk/sites/default/fi...

[PMRpro Ambassador in reply to PMRpro]

And this worked when I posted it. You can't edit a post and it retain the link though I see

[Sefu in reply to PMRpro]

Found thank you !

[Jan_Noack in reply to PMRpro]

my links stop working after I edit the post today.. more than 3 times

[Yellowbluebell in reply to Sefu]

See pro response but that's not enough and not long enough. She needs urgent treatment. If you dont get joy from eye hospital take her to the nearest big hospital A&E. Not a local one unless they have all the departments and a rheumy on call.YBB

[Sefu in reply to Yellowbluebell]

ok thanks !

[Maisiek]

Our Prof Dasgupta - Southend? But as the Pros say mum needs urgent Preds. Good luck .

[Sefu in reply to Maisiek]

Thank you. Might be bit too far geographically, but will keep in mind.

[SnazzyD in reply to Sefu]

If she is symptomatic I’d go A&E then sort out ideal Rheumy referral after that, especially as normal clinics are not running optimally at the moment.

[Sefu in reply to SnazzyD]

ok was thinking of going and just 'camping' in rheumatology dept so get 5 mns, but will try fire up normal path first.

[Yellowbluebell in reply to Sefu]

You wont get 5 mins. If the clinics are running they will be booked outsm and much as there are good rheumys most wont add people on to clinics unfortunately. If it was my mums would be at A&E right now and be refusing to leave till she saw someone qualified. Sounds extreme but we have all heard this situation too many times before and doing something NOW is the only option. YBB

[Sefu in reply to Yellowbluebell]

ok thanks.

[Suuha in reply to Sefu]

I was put on 60mg for GCA, confirmed within a few days by biopsy in May 2017. Now on 3.5mg. Seen by rheumatologist Dr. Sandhu In St George’s since then. She seems to know her stuff.

[Sefu in reply to Suuha]

Thanks !

[tangocharlie in reply to SnazzyD]

And tell them 'suspected GCA' so they can dig out the right protocol, not just 'headaches'. When I turned up at A&E with suspected GCA and said that they knew exactly what to do and got hold of the on-duty rheumatologist. Luckily mine turned out not to be GCA.

[whitefishbay]

I used to see Dr Ben Elli @ Hammersmith Hospital. He seemed quite good.

[Sefu in reply to whitefishbay]

Thanks.

[PoolePerson]

Professor John Axford brilliant Rheum doctor was St George’s might have retired but works privately Parkside Wimbledon. Good Luck

[Sefu in reply to PoolePerson]

Yes, retired sadly.

[Mary63]

The rheumatology consultant at Croydon is awful. I wouldn’t go there. I will never go there again.

[prunus]

When I was ill with GCA my son dumped me at A and E. and it went from there. That is where she needs to be in my experience.

[Sefu in reply to prunus]

Thanks !

[Yellowbluebell in reply to prunus]

I agree totally.YBB

[prunus in reply to Yellowbluebell]

Inspite of being there it took them nine days to come up with the right answer. I had kept telling them I was loosing my vision. One doctor even asked me what I was seeing. My rheumatologist told me I would have to educate most doctors about GCA. When I gave my optometrist paperwork about it his comment was he could not do with all patients with so much to read about.

[Yellowbluebell in reply to prunus]

Bloody useless!! Oh it makes me extremely angry that this is still happening all over the country. No one should lose sight from GCA when we have the solution, high dose pred.YBB

[prunus in reply to Yellowbluebell]

They finally came to me about 10pm on a Saturday evening with 60mg of predisolone and the difference it made to me within an hour was just unbelievable. I shall never forget it. I knew then that they had finally cracked it.

[PMRpro Ambassador in reply to prunus]

I don't ask them to know the details - but anyone who is likely to meet GCA should know the basics. And an optometrist is ...

[prunus in reply to PMRpro]

I'm not saying he does not know the basics but I suppose it is the teacher in me that I wanted him to have an in depth knowledge of the subject. Having had GCA it is a subject dear to my heart.

[PMRpro Ambassador in reply to prunus]

Why most of us oldies are here ...

[ChinaWuntoo]

I am hoping to find an alternative rheumatologist in East London. Some hope! After exchange of messages with PMRpro I was motivated to google more seriously.

Of 9 consultants at St Bart's Group and 15 at University College Hospital, not a single one mentions PMR or GCA as a specialism or special interest. One has written an article on one aspect of Arteritis that may or may not mean something.

Of course, the hospital websites could be out of date.

As I said to Mrs ChinaWuntoo, it's a case of treating ourselves.... with the help of this Forum.

[PMRpro Ambassador in reply to ChinaWuntoo]

If you can get taken by Southend it is probably worth the day out. It isn't as if you see a rheumy every month.

[ChinaWuntoo in reply to PMRpro]

Thanks. That's my secret aim! I had been visiting a terminally-ill friend in Southend Hospital before lockdown so I know the route and can manage it ok. I'm gathering information to present to my GP at the appropriate time - not forgetting, meanwhile, that if I get eye problems I will be straight to A&E before you can blink! And explain to any ignorant doctors that I need to be on high dose Pred.

[Sefu]

Yes, I get the impression it's a case of getting help and helping the helper to help you (based on own knowledge especially from here). Thanks for your message,

[Ruadh]

Hi, Sefu. A rheumy in London - Will need to check out, but Dr Millicent Stone, who is a superb rheumatologist, London, NHS Hospital, plus pvt. practice, plus 'also' has a position at Moorfields ! Will just check that she is still available in the London area. But, I found her ace, thorough, know her stuff, patients love here. Has empathy.

Right, watch this space, as I go checking -

Yes. OK - London Bridge Hospital : Guys & St Thomas - and pvt, The Physicians Clinic - part of Harley Street. Collaborates with Moorfields re Uveitis ; inflammatory eye disease.

Dr M Stone | Guys & St Thomas - Dr Millicent Stonemillicentstone.co.uk › guysthomas

Dr Stone is part of The Twin research unit in London with Professor Spector and his ... Dr Stone was appointed as a Consultant Rheumatologist in the Division of ...

Dr Stone is also a Reader for the University of Bath, until her daughter' Dx for a cance of the brain, she head up the rhumatology dept of the Central Rheumatology Hospital, Bath. the 'Min'. She set up diagnostic protocols that are now followed by teaching hospitals and rheumatologists, world wide. (Wish there ere more like her.) As for GCA : question : but, she could well be a starting off point. Contact point at her pvt clinic : thephysiciansclinic.co.uk/p...

---------------------->>>

Bit of biographic detail -

Athlete season - Problem solving masterclass | LBH GP Seminargpseminar.co.uk › athlete-season-problem-solvin...

Apr 27, 2017 - Biography: Dr Millicent Stone is a Consultant Rheumatologist working at The London Bridge Hospital and The Physicians Clinic part of Harley ...

[Sefu in reply to Ruadh]

Wow that is a great CV isn't it ?! Thank you.

[Ruadh in reply to Sefu]

Best rheumy I have ever met. Knows her stuff, and does not hold back when what she finds is...'doubtful' <smile>

Mind you Dasgupta - another luminary. Not many of them around.

[Fran_Benson Partner]

Hi Sefu, I think we spoke last week. Glad you have received some recommendations here.

It might be helpful to read this article in our latest newsletter. It details the new

NICE approved GCA guidelines. See p4 -5 and particularly bullet points on p5.

pmrgca.co.uk/downloads/1/

Select Spring 2020 edition.

Fran

[Sefu in reply to Fran_Benson]

Hi Fran yes thanks and been bit hectic still trying to make progress.

[Sefu]

Hi All Thanks for all input. So the GP was cross with me saying the Rheumatologist I asked for doesn't work at St George's and I can call myself. Called and got through to an on the ball secretary and the R. does work there, so we are on track for now. (Not able to persuade GP to refer to Dr. M. Stone at Guys who has great CV, but others will be great as well so fingers crossed. Does take some courage to try and 'break in' to achieve best outcome. Thanks again .... will update.

[Sefu]

Latest: discovered by accident that specific Dr was the A&E on call rheumatologist. However it was late and by the time A&E did their own ECG and blood tests, sort of too late so didn't see the oncall rheumatologist. However, going back Tues for more tests (I hope Mum won't be too upset by the biopsy process .... is it horrible ?) and may get chance to try and focus someone on selecting Dr with relevant specialism.