Nailfold Capillaroscopy

[Tregarron]

Has anyone had a nailfold test and been told that the Capillaries are abnormal and some have dropped out as I have been. If so were you given a reason for this and does it need treatment. My fingertips get very painful. Thanks

[Hidden]

This is usually related to Raynauds secondary to connective tissue disease - mostly useful as a diagnostic tool for systemic sclerosis rather than Lupus. Do you have Raynaud’s?

[Tregarron in reply to Hidden]

Hi

Thanks for your response yes I do have Raynauds. Initially I was told it was probably Dermatomyasitus then following a blood test this was was discarded. I have read that you can have this but it doesn't necessarily show in the blood.

[Hidden in reply to Tregarron]

Yes I have a sort of pending query over Dermatomyositis as well as a very positive antibody for systemic sclerosis plus I have seronegative Sjögren’s and Raynaud’s. But my main organ involvement is throughout GI tract and my nailfolds are normal so this has hindered a full scleroderma diagnosis to date.

I know that nailfold abnormalities can show a lot about which systemic disease process is occurring so can be very useful diagnostically - particularly with Scleroderma and Myositis. Myositis can only be fully excluded with a muscle biopsy I believe and DM can be diagnosed by skin biopsy.

[Tregarron in reply to Hidden]

My Sjogren's and Raynaud's are serenegative also. I also tested positive a couple of times then negative for antiphospholipid syndrome and had a DVT in my left leg in 2012. While I was on Warfarin the headaches I suffer from with Lupus disappeared. When I was diagnosed with SLE I was told that it is possible to have these conditions with a negative blood result. I did have a skin biopsy which confirmed Cutaneous Lupus and have treatment for that.

[Hidden in reply to Tregarron]

I have to say your specialist sounds much better than most of those I’ve seen. I was once told that there is no such thing as Seronegative Lupus by a rheumatologist and another scleroderma dr told me that all seronehative rheumatic diseases are mild in terms of disease severity.

This same chap phones me this time tomorrow morning for some reason and it will be very interesting what he has to say now that I carry an antibody with 97% specificity for systemic sclerosis. But he’s also led by the nailfold’s so we will see!😉🤔😊

[Tregarron in reply to Hidden]

Yes I went to three hospitals which were useless and the fourth the specialist was great. There seems to be so many different opinions about immune disorders that information is very contradictory. After being managed by him for a while I was assigned another specialist and it went downhill from there. I was discharged as I was told my Lupus was under control. I was then sent to another hospital whose dermatology did a biopsy and confirmed Cutaneous Lupus and started treatment. Now my SLE has started flaring and I am having lots of renal problems too which may be connected. I have now been referred to a centre of excellence have my appointment at the end of this month so I am hoping to be able to get it all under control.

[Hidden in reply to Tregarron]

Well just be aware that Sjögren’s and Myositis (and Scleroderma) can also cause serious renal problems so it’s really good that you’ve been referred to a centre of excellence - we can’t get referrals to these anymore here in Scotland as all in England 🙄

[Tregarron in reply to Hidden]

Thank you for your reply. I have been suffering with renal problems for quite some time. I was in hospital over Christmas three years ago with a serious kidney infection and I have had so many infections since. We should all have access to centres of excellence.

[Hidden in reply to Tregarron]

Yes same here - UTI sepsis, recurring kidney infections yearly etc. However, despite blood in my pee - a renal scan 2 weeks ago today showed nothing apart from a large ‘simple’ cyst on one kidney. Systemic sclerosis (especially diffuse) can cause catastrophic renal failure but that happens usually very rapidly over weeks rather than months or years. I do have hypertension but this is well managed - as is my Raynaud’s.

My rheumatologist has put me down for another cystoscope 6 years since the last one because I suggested maybe I have interstitial cystitis - which is closely associated with Sjögren’s. I’m not sure how they test for this and I do also have severe gastroparesis and bowel dysmotility - so messages are confusing.

But it would be good to find out why I always have blood in my urine at least.

My nails are a complete mess but it hasn’t affected my nailfold capillliaries.

[Tregarron in reply to Hidden]

My renal problems are complicated due to two kidneys which are joined together but each have their own ureter. Normal kidney set up on left. The right two and the ureters are enlarged due to the constant kidney infections. It's all very complicated as Lupus etc affect everyone diffntly doesn't it.

[Hidden in reply to Tregarron]

These CTDs certainly do affect each of us differently. It would be so much easier to be classic I often feel! I saw the vascular dr who is the Scottish expert on nail-fold capillaries year day. Mine are still normal and he suspects they always will be because he believes that my Raynaud’s and Erythromelagia are both secondary vascular responses to a neuropathic process rather than a vascular one. So my erythromelagia cancels out the vasoconstriction, much as a drug like Sildenafil would.

He confirmed that they now know Sjögren’s is a much more serious and complex disease than has ever been understood previously. And as I’m only one of two patients in Scotland with my scleroderma antibody - too little is known about it to know where it might lead. For now I don’t appear to have scleroderma but have severe neuropathy and related autonomic dysfunction.

However the main risk it is associated with is pulmonary arterial hypertension and catastrophic renal failure. So he explained that we will be antibody led and I’ll always need monitoring for both - which he said could also be related to the severe end of Sjögren’s. Hope this is useful in relation to Sjögren’s awareness etc.

[Jmiller623]

Yes. My cuticles were always pretty torn up and ratty looking. Plaquenil straightened that out within months. My nails look much much better now. I get bad Raynauds and have persistent aPL with marked livedo. Very much a vasculopath loopie. My capillaries were faint, some tortuous. First thing my rheumie noticed were my hands and fingernails. I looked very CRESTy in the beginning but just have smattering of all things CTD from lupus.

[Tregarron in reply to Jmiller623]

My nails still look rough they never grow in to a nice shape. My fingertips and nails hurt a lot and sometimes feels as it pins are being pushed into them.

[Jmiller623 in reply to Tregarron]

The pain and ulcerations are usually due to circulatory problems. Sometimes blood pressure meds like nifedipine can help with this. Get your vitamin D checked too. Once I started taking 5000 IU per day, my hair and nails started to grow like crazy where they were quite brittle and flimsy before.

[Hidden]

I have RA via stills disease, my nails reflect joint damage and follow flare ups. I have dry eyes, blue cold hands but no diagnosis. I have LS and IC.Not much help to you but all information helps build the picture.

Take care.

[Tregarron]

Thank you for your reply your are right all information helps. Look after yourself.