Recommended Rheumatologist in London to confirm diagn... - NRAS

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Recommended Rheumatologist in London to confirm diagnosis

AAMum profile image
6 Replies

I've been diagnosed with RA by one rheumotologist and prescribed hydroxychloroquine immediately but the second one said he didn't think I had it and should stop medication for at least one month and just do physiotherapy. Confused - any rheumatologist you would recommend in London as keen to see a third one even if overkill ??

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AAMum profile image
AAMum
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6 Replies
oldtimer2 profile image
oldtimer2

I would want to know on what basis the two different opinions were made - what is the evidence for each view? It might be worth discussing the different opinions with your GP if you have a good thoughtful one.

It certainly isn't helpful for you to have such diametrically opposite opinions. Have you the results of the tests that you have had? If you posted them on here, people with experience of interpreting the tests used might be able to advise you too.

Anniebl24 profile image
Anniebl24

Something similar happened to me. One said no, one said yes. It can be difficult to diagnose and make take time to be really sure.

nomoreheels profile image
nomoreheels

Hiya AAMum, welcome, though I'm sorry you've needed to seek us out. I can't help with locating a Rheumy I’m afraid, but a few things concern me a bit.

Not the best, to have differing opinions from 2 Rheumatologists. Can I ask, did you seek a second opinion with the other Rheumy or was it just you saw a different one in the same Rheumy Dept in another appointment? What stood out was one of your initial symptoms, Carpal Tunnel (pretty common in RD) as it's cause is inflammation. Also, your Rheumatoid Factor, that seemed a reasonable enough value to go part way to a diagnosis of seropositive RD even though it's not a hugely reliable test, certainly not on it’s own. Although, a few people can have a similar value & not have RD at all, so just having an RF value in itself isn't proof positive of a diagnosis. What would be more helpful as it's a more sensitive test is anti-CCP (Anti-Cyclic Citrullinated peptide), also used in the diagnosis of RD, along with inflammation values (ESR/CRP). Did neither of the Rheumy's include these in your blood test? Generally it's done at your first diagnostic appointment, not many GPs do it. I take it the second Rheumy repeated bloods, imaging etc to come to his consideration & didn't just rely on examining you? I ask as the hydroxychloroquine could have dampened down your inflammation enough to give a low DAS 28 score if you'd been taking it a few months.

Something which makes me wonder is why you were only prescribed the lower dose of HCQ? Was it that the first Rheumy didn't think your symptoms warranted more, that you only had a few joints affected or weight ration? Or, was it that he was testing your response to HCQ to support his diagnosis? Did he say at all? Often HCQ is prescribed if symptoms or number of joints affected don't warrant methotrexate, the usual initial DMARD treatment & a stronger med. I started on HCQ (400mg daily) for that very reason, my feet were the worst affected, although my hands did show inflammation on imaging but not by examination. I responded well for a time, then I changed to MTX. Just giving as a comparison to your symptoms & possible choice of DMARD.

What will be even more helpful is if you have a copy of the reports each Rheumy sent to your GP following your clinic appointments, to see what was to be actually recorded in your medical records. If you didn't receive them then do ask your Practice to send you copies, they may reveal more & give some insight of the reasoning of the second Rheumy's reasons for refuting the firsts diagnosis. Some Rheumys cc their patients as a matter of course, other you have to ask.

I hope you can sort this one way or another, particularly with having a baby to care for too. Congratulations by the way. I do hope it's not spoiling your enjoyment of these early months.

Zena profile image
Zena

I endorse what 'nomoreheels' has said about diagnosis. Under the NICE guidelines - look that one up - you should be referred to Rheumatology asap as the sooner you get treated the less damage will be done.

They can put you on Anti Rheumatoid medications. (DMARDS) - HCQ being one of them.

Rheumatoid Factor tests done by GPs are not conclusive so Rheumatology will do an Anti-CCP Antibody test.

These are totally accurate in my understanding and experience.

(I was negative with RF & highly positive on AntiCCP !!!

I was started on Hydroxychloroquine and it worked well but then I did started getting rashes so switched to Methotrexate, which, 10 years on, touch wood is doing its job and I play tennis a few times a week. So there is light at the end of the tunnel.

If you've got inflammation and pain, I really cannot see how physiotherapy would help?

Hope this helps.

Zena

Gassin profile image
Gassin in reply to Zena

I have been seeing a very nice rheumatologist call Dr Gerard Hall, ( 30 Devonshire street London W1G 6PU) I went as a second opinion the nhs chap who wanted me on MTX immediately with only basic blood tests X-rays, didn’t listen and was totally uninterested. Dr hall put me on steroids to start with, as my symptoms came and went but as I was able to function he was hoping it would settle and go as it started suddenly and I’m seronegative. Unfortunately it hasn’t, though it’s all bearable - probably the steroids! He also injected what looked like carple tunnel in my hand which has now gone and took off fluid from my knee. He has been extremely helpful listening and explaining everything. I got my blood tests done through gp to save money. Now on hydroxychloroquine (I don’t want MTX as liver is a bit weird) and have been coming off steroids, hoping it’ll work out that’s all I need. I still see the nhs consultant well once in a year as he keeps cancelling (last time he said come straight off the steroids a week at a time which is just wrong for me for a start) but follow the advice from the dr hall as I trust him. If you want someone to talk to who will explain the tests etc go and see him, I know a third appointment seems ott but you have to be able to speak to someone as well as doing research yourself… good luckGassin

Shireen10 profile image
Shireen10

Hello! There is a top rheumatoid specialist in Bushey (15 mins from London Euston) his name is Dr Krishnan At spire - maybe you can have a telephone conversation but they need to check your bloods and your GP needs to liaise with your rheumatoid doctor and vise versa to figure it out

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