Im looking on paying private (once again) but this time to the london bridge lupus center - I have saw numerous of posts on here but only from a few years ago about the hospital and what dr is best to see.. I have called them up and they said its £600 for lupus blood tests, first consultation £230 and rest then at £205. This is pretty expensive but unfortunately the route I will have to take to get diagnosed and some sort of answers hopefully..
Has anyone else been there with there current blood tests which was done at the nhs hospital and got diagnosed on the first appointment or do they request for bloods to be done for more money?
I have heard Dr Kaul is quite good and that is who im looking on making an appt with once I know abit more information- especially living in Birmingham and having to travel to London.
Hi Leanne a few of us go to London Bridge from the forum as we cannot get referrals or need more specialist advice. Before I saw the specialist there I summarised my history till I was diagnosed, sent copies of all my blood tests(NHS), current medication, symptoms or problem's/ concerns to his secretary for the doctors information and bring copies for him for the appointment to discuss. Last appointment I just had a couple of tests about £60.
I imagine it depends what blood tests you are providing if you need additional. I found it helpful to go there, I hope you do too. ML 😊
I was looking to go there privately but my GP agreed to send me to the Guys Hospital London Lupus Centre. Most of the Consultants who work at the private clinic also work at Guys. I've seen Prof D'Cruz who was exceptional in his history taking and examination. I saw him within 10 days of the referral, my GP and I have received Clinic letters with follow up instructions that were triggered by blood tests done at the clinic and it was all on the NHS. Granted, I have to wait until Nov for my face to face review but I was very impressed.
I put a good case to my GP as to why I needed a second referral/opinion, in that I wasn't getting anywhere with my current Rheumatologist and as a result of the second opinion further clinical information has come to light.
Is there any reason why your GP won't refer you on the NHS? You are entitled to a second opinion if you feel that your care has not been adequate?
I have asked my gp to see if I can have a second opinion elsewhere but she refused and said will be a very long process. And just said it looks like I'm very close to getting
Diagnosed with lupus, but I think they just say that to rush you out of the room
Can you ask her what her exact reasons are? If needs be take someone with you and don't allow yourself to be fobbed off. Or could you see another GP in the practice?
If her reasons are that she thinks that there is soon to be a confirmed diagnosis of Lupus made more locally, it would make sense for her to wait as once you are diagnosed you can begin treatment. It may be that she wants you to start treatment asap and referring you elsewhere will delay things.
However, if you feel that you aren't getting the treatment you need then you are entitled to a second opinion.
Are you seeing a local rheumatologist? Have you had any diagnosis made? Lupus is a tricky business and I only sought a second opinion after 18 months of good quality care by my local rheumatologist. I only got the second opinion because I wasn't suitable for biologicals and had tried and failed all DMARDs.
Maybe your GP needs to communicate her thoughts and plan with you a little better. It's important that you know where you stand. She sees you for 5mins but you have to live everyday with your symptoms.
Maybe go back and see what she says? Going privately can be so costly.
I have saw loads of gps at the practise they all seem to be the same. Is very hard to find a good gp and rhumotologist.
With your blood tests was they always constantly positive? Mine seem to alter quite a lot which I think why there not diagnosing me iv always had a very high ana but everything else seems to be normal.
I am always Ana negative but have 9 out of the 11 symptoms set by the American society of Rheumatologists. My malar rash is textbook. And I have many other symptoms that fit Lupus. Lupus isn't diagnosed just on bloods but the history of symptoms. Bloods help but they are not definitive.
Your GP cannot refuse you a second opinion. I too have been seen at the London Bridge but I was lucky enough to have cover from my husbands work. I do agree that you can be seen by all these consultants on the NHS. I took my results, they sent me for a few more privately, but also said they would see me under the NHS if required.
Apologies for the late reply and you've had some great advice already. The reason for late reply is that I've been travelling to London as l have an appt tomorrow at LLC. I need to tea so from Cheshire and can t manage it in 1 go!! I'm seeing Dr Kaul tomorrow as my usual doc (Dr Tench) is on holibobs 😊 I am extremely lucky that I have insurance but if I didn't, I would have found the money somehow.
I've been having symptoms for over 10 years and was misdiagnosed with ME. My GP is awful and wouldn't refer me to a rheumy but luckily for me, I was referred to a dermatologist for something un-related ( I have dermographism) I was in a full blown flare with distinct malar rash and it was him that ordered loads of bloods and told me that I needed to request a referral to rheumy. My GP refused initially as all my bloodwork hadn't come back, told me to go home and think about it!! And if I wasn't any better in a few months to go back...my hubby was furious (deffo take support with you) 3 days later I got a phone call from the surgery saying i needed to see a rheumy as my anticardioplin antibodies were high, vit d, calcium low, etc.
First rheumy was crap even though he was private through insurance. Didn't do any more bloods and just said it was my ME back and bugger all could be done. I asked for a second opinion there and then.
I saw Dr Tench and he ordered another batch of bloods (you need to have them done 12 weeks apart) They did come back positive (anticardioplin antibodies). However, all the Drs treat the patient - not just what the bloods say. Your history, your symptoms, everything! Everyone is an individual and I cannot recommend the LLC highly enough.
Call the doctors secretaries - they are lovely! (Id ask for Allison or Sally if poss) and see what can be done. If they can help they will. My heart breaks when I read posts where you're made to think you're a malingerer or it's in your head.
How did you get on with the appt if you dont mind me asking?
I booked in for my first appt today on the 29th sept with DR Kaur at the LLC - I am taking my mum with me for support as im only 22 so have been dealing with it quite bad since I fell ill at 20.
Im worried they will say i dont have it as my bloods are usually normal an just have a high ana.
Sorry not answering sooner, I've been on a bit of a downer. Not just because of symptoms and meds, just family stuff. I'm exhausted.
I am absolutely delighted that you're going to the LLC. Dr Kaul was lovely. I'd gone to see him as I'd had an MRI scan the previous week but Dr T asked if I'd mind seeing Dr Kaul as he was on holiday, and he didn't want for me to wait an extra 2 weeks before I could get the results. I'm really glad that I didn't wait as I've got a bulging disc, a tear in a disc, almost no disc at the bottom of my back and abnormalities in some of my lower spine (the sticky out bits at the sides of my spine). He also said that I have Ehlers-Danlos Syndrome as this is his speciality. So wow, Dr Kaul is very thorough, listens to you and asks questions so I really do think you're going to begin to get answers.
I went for a consult there and just took the tests from my GP which were pretty comprehensive. Dr Kaul took a long case history and did a physical exam. No need for extra tests. You then get a letter with meds and they will also write prescriptions if you need them. It held me until I got an NHS referral. The doc was very good and pleasant to deal with.
Hi, I saw Prof D'Cruz there recently and he was brilliant. I took all my blood test results, hospital letters, scan results etc with me and didn't need to have any additional tests due to the info I took. Cost was £230 in total for a really thorough, comprehensive assessment and advice. Good luck with everything. xx
Very normal. If we are paying privately, seeing a new doctor, haven't had answers from NHS doctors so far and feel let down, you will be nervous. I didn't feel nervous until I sat in the waiting room and then got really anxious and felt sick with anticipation. When he took my blood pressure, it was high. I'd never had high blood pressure before and it is now normal. I had just worked myself up about appt. But he was really kind and I was at ease as soon as we walked in. Then with my diagnosis, I felt relief that I had been right all along and could get the further help I needed. You will be fine. Are you taking someone with you on 29th?
Yes My mum is coming with me. I'm more nervous to get diagnosed, even though it's a huge weight of my shoulders I'm unsure if I do want to get diagnosed
I know what you mean. No one wants a Lupus diagnosis BUT after what a lot of sufferers go through it is a relief - that you're not mad, not a hypochondriac, that you have a diagnosis, can get a treatment plan and meds. It actually gave me hope. Fingers crossed that when you are on the right meds and you are managing your condition as well as possible, you will suffer less and your flares be fewer and less severe. Hope that makes sense. You are not alone with that feeling on being on a rollercoaster and wanting to get off! x
I know what you mean. No one wants a Lupus diagnosis BUT after what a lot of sufferers go through it is a relief - that you're not mad, not a hypochondriac, that you have a diagnosis, can get a treatment plan and meds. It actually gave me hope. Fingers crossed that when you are on the right meds and you are managing your condition as well as possible, you will suffer less and your flares be fewer and less severe. Hope that makes sense. You are not alone with that feeling on being on a rollercoaster and wanting to get off! x
Very normal to be nervous! I usually see Dr Tench but saw Dr Kaul today and he was lovely! Dr Tench is fab though. I do think that if you see any of the wonderful drs at the LLC, you'll be in very safe hands.
unless you are literally dying lupus is the underdog of rheumatology maybe rheumatology is the underdog full stop. all the drs i have seen are irritating and not really bothered. i have great skin but lupus has affected everything else. joints, fibro, eyes, hands the lot. good luck with the treatment and the overall care. i am not impressed
Totally agree with you I always say this- I am constantly having flare ups an now been very bad for 2 weeks with kidney infection drs or my rhumy won't respond to me, iv called an emailed my rhumy but never responds.
Hi Leanne. Joining this discussion a bit late but noticed it whilst trawling for posts relating to my own current emergency. Please don't be nervous about seeing Dr Kaul. He's quiet, very thorough and very, very kind. I've been seeing him myself for the past couple of years and he's been the best! Also, in my experience, he'll take as long with you as he needs to so sometimes his clinics do run late because he never polishes people off if they need a bit longer. (Tried to get an emergency appointment with him myself today but he's fully booked until the 31st so I'm seeing another one of their doctors on Monday instead.)
Hi Leanne2pp. Just want to say thank you for your post 😀.
Like you, I'm struggling to get treatment since having a severe allergic reaction to hydroxychloroquine in December. My rheumatologist seems to be one of those who treats blood tests results, not patients and symptoms.
Despite having an ANA of 1:1600 (homogenous patterned), an C-ANCA of 1:1600, a diagnosis of livedo reticular, punctual plugs for severe dry eyes, a letter from the endocrinologist suggesting possible Sjogren's/vasculitis...and all the multiple symptoms that folks here know only too well.
He also has letters from an opthomologist, endocrinologist, ENT consultant and dermatologist all suggesting that I could benefit from treatment with long-term immunosuppressants...he's still dragging his heels about treatment.
So...the rheumatologist has got as far as diagnosing me with UCTD - but says that 'we' don't treat that with immunosupressants...so that's left me with nowhere to go, since I can't take hydroxychloroquine.
And like you, I'm now concerned that he will decide that I have fibromyalgia - and find another reason not to give the treatment that four other consultants suggest I need.
I've been virtually housebound sofa surfing (without the surfing) for two and a half years now and the thought of existing like this for much longer with no hope of help on the horizon is...well, just unbearable.
Which brings me back to your post (I'd say wonderful - but it's not for you is it).
Having read your post and the really helpful responses, I've been able to start formulating a plot on what to do next if treatment is not forthcoming at my appointment on August 23rd (six weeks late due to constant clinic cancellations). So, thank you again...you've helped shed a bit of a light into the long medical tunnel that is all things autoimmune.
Really hope that all goes well for you at the London Bridge Lupus Clinic. From the responses here it looks like is might be the place to be 😊😊.
And what a wonderful forum this is...I'm learning so much - most importantly, I now realise that all my bodily oddities are quite normal - in a nightmarish autoimmune kinda way 😖.
That means I'm not mad - at least, not yet 🙄
Very best of luck and take care... I'll watch out for any updates to see how you got on.
👍
P.s. Just wondering if you've been to the Birmingham Lupus Centre of Excellence (one place I was going to ask my GP to send me to for a second opinion). Would be really grateful if you could PM me if you've been and found them...hmm...less than helpful 😉.
As a fellow UCTD sufferer I'd just like to say that if symptoms are bad enough then it is treated with immuno- suppressives. It's a condition that needs monitoring for changes too!. I think you need a Rheuny more experienced in treating the symptoms without safety of blood results!. They do exist !. Hope I've helped. X
Hi Misty14. Thank you so much for this. I was deeply suspicious of the rheumatologist's claim that there is no treatment available for those who (for whatever reason) can't take hydroxychloroquine...but did wonder if I was being unreasonable.
It appears I'm not 😉😀.
So yes...your reply is a great help. I'll keep pushing for treatment and if this is not forthcoming at my appointment on 23 August, I'll start looking for a rheumatologist who is prepared to treat symptoms...or rather, the actual real life person patient sat right in front of them.
Funnily enough, I think the endocrinologist was trying to give me a clue when he said 'what you need is a good rheumatologist'...so hmm 🙄.
Thanks again, very much appreciated...and a great relief too 😀😀
Hi Misty14. Oh yes indeed...that would be sooo goooood 😉😊
Will keep everything crossed for you on 24th...hopefully whilst I sit chomping on Azathioprine...wrested from the prescription pad of the largely unwilling go home and suffer...you get the rest 🙄😀😀
Hi Misty14. Eureka...I have treatment! Just had confirmation that blood results are okay so starting Azothioprine tomorrow morning.
Must admit, now that the time's come, it feels a bit daunting having to take such powerful drugs...hoping that my body can tolerate these better than the hydroxychloroquine...ever hopeful 😀😀
Going to post an update on the forum (when I can stay awake long enough)...but just wanted to let you know.
Thank you again for your lovely words of support and hope all went well with the X-ray today.
Hi foggy me, so pleased at your news but understand how you must feel trying an immunosuppressive!. It's very daunting. I've taken Aza twice and it's been very helpful so ask me anything about it you want. I've had great news today, foot healed so no boot. In shock I've managed something to plan!. We usually don't with these illnesses!. Thanks for remembering and telling me your news first. Good luck tomorrow for first pill. X
I'm still pinching myself in disbelief. Bet your doing a bootless jig of joy (if jigging is currently possible).
Took the first pill this morning - and nothing dreadfull's happened - yet. Ha ha.
Great to hear that the Azo was good to you - very reassuring - will hope for similar. And thanks for the offer of advice - you'll be first post of call if things start getting dodgy 😉.
Hi again, I wanted to add that I went London Bridge because there no centre of excellent s in Wales and my sister said if I got to live with Lupus I should go to see a doctor who specialises in it and treats Lupus patients everyday. England NHS allows you to seek second opinions any where in England, not so here. The bonus going to a specialist was the doc diagnosis of secondary autoimmune symptom's that no one else.
Don't worry if you do go they (the docs)do listen and it helps. Maybe you could get a recommendations of a specialist closer to home as mentioned above I.e. Birmingham. Good luck. ML
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