ANA Titre 1:80 with Raynauds and burning hands

[Chester_1983]

Hi, looking for some help and advice from others...

Male - Age 39 - slim - mostly fit and well - non smoker

I have this year began to experience episodes of Raynauds that appear to be triggered by the cold (but not that cold) weather and also stress/anxiety - so fairly classic stuff.

The GP initially dismissed it but I used my work private heath cover to see a Rheumatologist. They ordered some blood tests of which I now have the results.

ENA - normal

Complement - normal

Rheumatoid Factor - normal

But...

ANA - 1:80 Positive.

The Rheumatologist is a very nice lady and appears competent. She has expressed little concern at the results and says the ANA is very low and not significant but has recommended a nailfold capillaroscopy which will need to be done by someone else - she doesn't carry out that technique so I've been referred elsewhere.

My concerns are with what I am reading online in conjunction with my symptoms. My Raynauds attacks are fairly mild I think - not purely white then blue then red. They are brief and my fingers turn red. My hands are flushed and feel burnt and have been like that for 10 days. I am not overly tired and I am functioning as normal but do feel somewhat achy - but not pervasively so.

I feel like it is overwhelming likely I have a Scleroderma and that is where this will end up.

Appreciate any comments and in particular, views on blood test results. Thanks

[Bkart]

Hi Chester,

Sorry to hear that you have most probably joined the Raynauds ‘club’, your fingers look as red, sore and painful as mine at the moment. I’m wondering if I have Erythomelalgia as well as Raynauds, this condition causes redness and burning, it is almost the opposite to Raynauds! I find that heat sets this off for me, with a Raynauds attack it is important to keep warm but I find when my finger tips are burning and painful like this I just want to touch something really cold to stop the burning pain but then this can then bring on Raynauds, so a real dilemma! I definitely feel the difference between the two conditions, hopefully someone with more knowledge can help with advice. Show your Rheumatologist these photos at your next appointment and keep a diary about any new symptoms.

With regard to possibly developing Scleroderma try not to worry too much as many people have positive results for ANA but never go onto develop Scleroderma. The capillarioscopy will help to give a clearer understanding but even if negative now it can change in the future. Your Rheumatologist will be monitoring you in the future but if you do develop other symptoms ask your GP for another referral sooner. Unfortunately Scleroderma can take a long time to diagnose, is very variable with some people having fairly mild symptoms which can be controlled with medication whilst others do develop more severe illness but still manage to lead good, long, positive lives.

Wishing you all the best for the future and whatever the outcome try to remain positive and ask for help if you need it.

[JustJanet59 in reply to Bkart]

Hello - Sorry to hear you are struggling with your hands.

Having just moved away from Chester, I am wonder if you saw Prof Barnes? She is the Rheumatologist with a special interest in Scleroderma at the Countess Hospital. I was diagnosed by her and had all the tests you describe at the hospital.

If not, then I would encourage you to request a referral to her or to the Rheumatology clinic at the hospital. You may also need further tests.

[Chester_1983 in reply to JustJanet59]

I have been referred to her yes. A request has been made to perform a nailfold capillaroscopy.

I had to push for the referral as my Rheumatologist still thinks it is Primary Raynauds and that the ANA of 1:80 is not a benchmark to judge upon.

I dont appear to have any skin thickening yet. Just sore hands following Raynaud's attacks. The Raynauds attacks aren't severe but they are happening.

[OldTed60]

ANA of 1:80 is weakly positive as you know. Mine is always same with a pattern suggestive of scleroderma/ Myositis. It was initially equivocal when first tested and rheumatoid factor was also weakly positive. Then at some stage negative and finally clear positive at 1:640/ 1:320 - always same nucleolar pattern. The scleroderma drs found no sign on capilleroscopy and ANA dropped to 1:80 so was dismissed despite positive biopsy for Sjogren’s.. Now under general rheumatolgy where a specific ENA antibody showed up for SSc - usually diffuse. Still got ??? about SSc due to lack of Sclerodactyl and nailfold changes but diagnosed with Overlap CTD now with Raynaud’s and Erythromelalgia. My rheumatologist retests regularly and I’m on max treatment for Raynaud’s and immunosuppressed for systemic disease.

It’s mostly attacked my gut from head to tail but every few years it has a go at my skin with awful itch and strange shiny lesions plus pitting. I guess the treatments I’m taking are keeping it at bay.

You hands could be a milder version of mine when Erythromelalgia is starting to flare up. These days my Raynaud’s is getting worse.

Despite being dismissive previously I saw the vascular medicine nailfold guy again a few years ago at my rheumatologist’s request. I asked him if the Erythromelalgia (which is more associated with RA and Sjogrens than scleroderma I should add) was cancelling out the capillaries from showing in my nailfolds maybe? He jumped with agreement at this suggestion said exactly - and I haven’t had a capilleroscopy since. Raynaud’s is cold and numb for me whereas Erythromelalgia is intense burning neuropathic pain in my peripheries - especially in early hours or after friction of walks in warm weather. Both extremes suck but I tell myself I’m lucky if one cancels out the destructive impact of the other!

A weakly positive ANA with Raynaud’s and possibly, EM/ Erythromelalgia and mild symptoms such as body ache really could be early stages of any autoimmune, less likely scleroderma than Lupus, RA, Sjogren’s. Or just palindromic ie comes and goes, a slow burner that can’t catch light so simmers or burns out or finally catches light like mine. So I really wouldn’t be too doom and gloom heartsink at all at this early stage, certainly not about scleroderma if your ENA panel is normal and you’re not ill.