Disagree with RA diagnosis - where do I go from here?

My initial diagnosis was unspecified inflammatory arthritis in 2009 but rheumatologist felt my symptoms were Lupus-like. I moved hospitals in 2011 due to difficulty in traveling to the first hospital. My current rheumatologist diagnosed me with seronegative RA. She was off sick for a few months and I recently saw her colleague who suggested anti-TNF treatment (cimzia) but also wrote in her letter that she feels my diagnosis is likely to be RA but she was not certain.

I have asked repeatedly that, given my nail psoriasis, (confirmed by 2 dermatologists) is my diagnosis is more likely to be PsA, therefore should a different anti-TNF be chosen? It's never been answered. I've also asked to have more antibody blood work done but they've refused because my ANA was negative 2.5 years ago. However, at diagnosis, I had a whole battery of bloods done to test for various other types of autoimmune inflammatory arthritis. I would feel more at peace if they were repeated. I am unwilling to be plonked on an anti-TNF for RA when I have Lupus symptoms (as confirmed by my 1st rheumy) purely because it's too expensive to check!

I have private insurance and I'm wondering if it's worth getting another opinion purely to get the bloods done. Whatever is wrong with me, it's disabling me and causing my damage as evidenced by MRI scans. Any thoughts and opinions would be gratefully received! Thank you.

10 Replies

  • If you have the medical insurance certainly go and get them done.That way you will some answers for when you go to see your drs next.xxx

  • private medical insurance will not usually cover pre existing conditions, hoping you took it out prior to your illness??. I had positive ana test recently my consultant query diagnosis now too!! your not in gloucestershire are you ??!!

  • Hello fruitycake. I too am all at sea with my diagnosis at the moment, so much so that I can't articulate the ins & outs, concerns, confusions etc. I just know that although I have some very good days and my inflammation is finally low-ish and my long-lasting knee swellings are much reduced I still feel like s**t much of the time & feel I'm getting worse.

    I am considering getting another opinion & I'm not sure why I'm hesitating. Possibly it's because I fear adding more confusion to the mix. But then if the second opinion does turn out to be less than illuminating then nothing's really lost, especially if you have private insurance. And it could clarify matters. I'd say go for it. I'm telling myself the same too.

    Luce x

  • Hi Fruitycake23

    See if you can get referred to St Thomas' Lupus Unit, London if you think you may Lupus. They are one of the top Lupus Units in the world.

    I went there as I was told I had Hughes Syndrome. I saw Professor D'Cruz who is the most amazing and best rheumatologist I have ever met (I have been to a lot!). Professor Khamashta who also works there is also meant to be fantastic.

    I had masses of blood tests when I went there and as it's NHS, I didn't have to pay anything.

    If your doctor won't refer you, you can also see these consultants privately at London Bridge Hospital in London. The consultation is about £200 but with testing it would obviously be more.

    Professor Hughes also works there (Hughes Syndrome is named after him) and he is also and expert in Lupus. He is a lovely man and I have seen him too. Sadly, he only works privately now.

    Good luck Fruitycake23!

  • I'd second the suggestion of the London Bridge Clinic, having been there a few years back. But, before you did that, ask your GP if you can be referred to a different NHS rheumatology unit for a second opinion - do some homework on the special interests of the rheumatlogists available in your area, and either ask for a lupus specialist or a spondyloarthritis specialist, rather than a general rheumatologist. Not all rheumatologists are up with the latest on either lupus or spondy, and spondy (including PsA) knowledge is changing very rapidly at the moment so you need someone with a special interest in it. FWIW my blood testing at the London clinic for a full lupus screen was about £350 about 5 years ago. Can't remember what the appointment cost was.

  • I think you've been given great advice - especially by KJay who obviously knows her stuff (or his?) from experience. You do need certainty at this stage I agree. Surely your GP could order an ANA as mine did? One or two blood tests can't cost more than anti-tnfs. It sounds more as if they are just ticking boxes with you.

    No one can make you take anti-tnfs of course. Many of us have a degree of uncertainty hanging over us re diagnosis. For me its a matter of being seen too infrequently. How can a consultant, no matter how impressive his or her experience and skill, really get a feeling for a patient's condition if they haven't got enough time or familiarity with their case. Seeing a very eminent doctor privately might well give you the answers you need I feel because they would give you more time. If you can get all your blood results clarified on NHS then that would save you some additional costs too. Tilda x

  • Thank you for the replies.

    I am fully covered for consultant fees, blood tests, xrays and scans, so in some ways, it would be easier to go privately. Unfortunately I am not covered for any central London consultants as the level of cover was outrageous as they charge so much more.

    I have considered asking to be referred to the St. Thomas lupus clinic but it would have to be on the NHS. I'm not sure if my GP would refer me and I'd feel funny asking my current rheumatologist. I do like her and respect her, so I'd be concerned about offending her! I know my GP would have no qualms over referring me privately and it could be sorted out so quickly but as Luce says, I'm just worried about adding further confusion into the mix!!

  • If there is any confusion about your diagnosis then you are well justified in asking for a second opinion.

  • Have you looked to Gout?

  • Just a thought: is it possible just to have your bloods done privately? That point you make about not wanting to go on anti-tnfs simply because a repeat blood test for antibodies is considered too expensive is a very good one. And have you made that point in that way to your rheumy? I would have thought it would be very persuasive to a cost conscious consultant. x

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