Nailfold capillaroscopy. Testing not available in... - LUPUS UK

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Nailfold capillaroscopy. Testing not available in the areas I live. Are there any private clinics that do this test?

Hi after speaking to my GP in regards to a nailfold capillaroscopy test. She contacted my rheumatologist and it's not available in thr area I live in. Which is Scotland. Does anyone who lives in Scotland know how to get this test or if anywhere private can do it?

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I would be cautious about getting it done privately as interpretation of nailfold capillaroscopy is specialised and can be challenging. What are you hoping to achieve getting the test done?

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OK. Thank you. I thought it might be a useful diagnostic tool for helping to diagnose systemic conditions. My rheumatologist thought it would be helpful but unfortunately can't get it done on the NHS.

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Don’t know if this article is helpful? Have heard Prof Herrick speak about capillaroscopy, probably only really useful in Scleroderma and Reynauds. Sometimes Vasculitis can present with splinter haemorrhages. Do you have any symptoms in your nails?

the-rheumatologist.org/arti...

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No problems with my nails. I do have raynuads which is increasingly worse. I am due to have iloprost infusions in a few weeks. Hoping that helps as the medication wasn't working.

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If you are due to get iloprost would capillaroscopy add anything? Are they querying Scleroderma?

You would think that Edinburgh should have access to a pretty standard investigation!

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No. Not scelroderma. I had never heard of the test. It was my mum that thought it might be beneficial for helping to diagnose a systemic condition. I have 2 consultants who suspect lupus but not showing in the blood results yet.

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How times change - it used to be done in Ninewells. If I were in your place I would try writing to Prof Jill Belch, who as far as I can tell is still at Dundee, and ask if she can suggest a way of getting it done. Her field is vascular and inflammatory medicine. At the worst she can ignore you and at best can help.

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Hi PMRpro. Thank you. I could try that. I find it odd how the NHS where i am don't do it 🤔 X

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See my reply Pro. It’s still regularly done at the Ninewells! Dr Colin Baines is the expert now.

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Couldn't believe it wasn't - makes you worry a bit about the level of information on the part of some same-system units doesn't it?

Thank you!!!

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Ach it will maybe just be Edinburgh having a superiority complex over Dundee lol?!

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I nearly said that!!!!

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Welll we’ve got the best Uni and the V&A now! 🤭😎

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Which according to some jaundiced cafe owner hasn't improved the footfall in his cafe. Which is aimed at parents and small children ... Would YOU take toddlers to the V&A? Or go to that sort of cafe?

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No probably not but also the cafe there is rubbish - flimsy long tables and not enough of them plus queues rather than table service. The elite restaurant upstairs has all the views

There are some great cafes all about though but a bit of a walk away into town. The nearby Discovery cafe needs to up its game I guess?

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No, not at the V&A, in the town nearby - article in the Telegraph my nephew posted on FB,

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Oh okay I’ll look out for the article then. I don’t have grandkids or child visitors so this hasn’t been on my radar!

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eveningtelegraph.co.uk/fp/d...

i.e., I did nothing wrong and I want sympathy...

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Well yes I can see that the city centre won’t have benefited much from the waterside developments - which aren’t yet complete anyway. I never go into town as I always have the dogs and wouldn’t choose a child friendly cafe at this stage of my life. But it’s a shame for all affected and I do think the V&A is a let down within too. Xx

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I visited this cafe once, before it became so child friendly. It was ok but nothing special. I think the big problem laterally was it was so child friendly that those without children didn’t want to visit.

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Exactly GE - and that IS a limited group to aim at, they tend to grow up and move on!!

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The Ninewells Dundee have the second largest scleroderma clinic in UK and the chap I see most specialises in nailfold capillaroscpopies. It’s a very simple test but as Tynemouth comments the interpretation is key so I wouldn’t try to getting it done privately. You should be able to get referred to Ninewells if this isn’t your hospital already.

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Hi thank you Twitchytoes. I live just outside of Edinburgh. Dundee is a bit far to travel unfortunately.

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It’s only just over an hour from Waverley?

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OK. I thought longer. Would i still need a gp referral? Have you had one done before?

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Yes. Mine was normal which was a bit of a curse for me! But my secondary Raynaud’s is very intermittent and is secondary to severe neuropathic damage.

I don’t know how you’d get referred tbh - ask your GP or rheum. I have to travel to near Dumferline for pain clinic and other specialisms because of my post code - can see the Forth Road Bridge from the hospital window and it takes under an hour by car.

If you can get a referral then getting to Dundee shouldn’t be a big deal using public transport.

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Getting transport wouldn't be a problem. I have someone that could take me. It would just be how i would go about getting an appointment there X

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I've had it done several times as part of a clinical trial in Leeds. It wasn't used as a diagnostic marker however as it was fairly obvious that I had scleroderma, and it was positive as expected. I've never known it used to diagnose anymore as it is fairly obvious if someone has connective tissue disease from symptoms and blood tests. If you really think that you need it you could look for trials from the scleroderma and raynauds association who may be able to direct you.

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Hi Missustee. It was an idea. My rheumatologist thought it would be a good test to have done although it's not available where i am. I do have raynuads but also thought that could help distinguish between primary and secondary. As it's got significantly worse in the last few months.

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Could you ask your endocrinologist to call the rheumatologist you had the consult with? It seems the endocrinologist is suspicious of lupus and The rheumatologist cannot make a diagnosis yet. But he is saying the procedure would be helpful. Maybe between the two of them you could get a referral into a center that does the test. If they are hesitating to start treatment but the test would make a difference, that would be a reason to do it. I don’t know the UK system but in the US the insurance companies want to know if the tests would change treatment. Sounds like, in your case, it would. Hope that is helpful. K

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Hi Kayhimm. Thanks for the reply. Yes i could try that. He has been helful so far with the quick referral to dermatology X

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That is great. I had the feeling before that he is an influential person in his field. He can be your sort of advocate since he was the one to tell you he suspects lupus. Getting doctors to talk can be enormously helpful. It have had that experience many times.

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Mine have been done as a given in Leeds. I don’t know how expensive the equipment is but have read it may one day provide an excellent diagnostic tool in GP practices for early vascular changes indicating future heart/lung problems.

Mind you, my curly whirley capillaries are entered in a 10 yr study to see who’s dead at the end of it and the causes, so it’s pretty much research after the first abnormal test.

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Have you had an ANA blood test?

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Yes. Last may. It was positive.

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Do you know for which antibody?

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