Raynaud's, visible nailfold capillaries and positive ANA, feeling scared

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New Member

Date Joined Apr 2011
Total Posts : 1
   Posted 4/6/2011 10:32 AM (GMT -6)   
Hi everyone,
I hope someone here will  have been through what I'm going through and be able to understand...I'll try to keep my story brief!
Last year I was having a manicure and the beatician noticed dark spots on my cuticles. I'd noticed them too, but they weren't painful and I just thought it was one of those things that would clear up. However, a few weeks ago I decided to Google what it might be, and came across lots of information about nailfold capillary abnormalities and Raynaud's. I had also developed Raynaud's last year but it hadn't worried me particularly as it's never that bad, and goes off after a few seconds most of the time. 
But the information I'd read on the Internet prompted me to go to my GP again (a different one, as I have since moved area), as the capillaries on my nailfolds are visible to the naked eye, and the dark spots on my cuticles appear to be due to microbleeding from the capillaries...The GP looked at my hands and said 'it's nothing to worry about'! I said that I thought it was something to worry about and asked him to look into it for me. He did, and then sent me for blood tests.
These tests have now come back, and I have been told that I have a positive ANA Hep 2 result 1:1280 and 1:160 fine speckled pattern. I was told these results on the phone, and have an appointment on Friday to discuss them, and hopefully be referred to a rheumatologist. Now, from my searches on the Internet I know these results suggest a Connective Tissue Disease, possibly SLE. But,  the only symptoms I have are mild Raynaud's and the visible nailfold capillapries. I'm otherwise feeling well, with none of the other symptoms I've read about. I'm really scared, and feel like a time-bomb of symptoms which could arrive at any minute :(
Also worth mentioning is that last year I also started taking the combined contraceptive pill - one of the side effects in the packet says rarely you can develop SLE - could the pill have caused my current problems? I have already stopped taking it due to migraines a couple of months ago - will stopping the pill mean the symptoms go away?
Has anyone else had similar experiences?
Thanks so much in advance,

Forum Moderator

Date Joined May 2005
Total Posts : 7668
   Posted 4/6/2011 11:11 AM (GMT -6)   
Almost all cases of med-induced lupus go away when the medication is stopped. I don't have the list of medications in front of me, but please make sure to mention this to your doctor.

A positive ANA can mean many things, but doesn't necessarily mean you have active symptoms. You may be placed on plaquenil, a med that helps inhibit lupus progression. I don't know if it is used in Raynaud's or not.

None of these diseases *have* to get worse -- I mean, just because you have a positive ANA and mild Raynauds does *not* mean you will get sicker, feel worse, and so forth. These auto-immune diseases are very different person-to-person, and can remain mild throughout your life.

As with any disease, good sleep, healthy food, and mild regular exercise should help maintain your current level of health.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

New Member

Date Joined Apr 2011
Total Posts : 1
   Posted 4/11/2011 6:59 AM (GMT -6)   

Hi there,

Thought I'd give you some insight into my story in the hope that it may help.

I was diagnosed with Raynauds at 12. I also have a positive ANA, >1/1000 (homogeneous) and nailfold capillaroscopy results abnormal (level III).  My Raynauds is considered severe and I had 2 sympathectomy procedures about 9years ago which made a massive difference but unfortunately things are getting worse again (mulitiple ulcers). I now have iloprost treatment.

The funny thing is, up to 18 months ago I thought I had Primary Raynauds. My rheumatologists decided not to inform me that I had these other factors and there was a possibility of it developing into Secondary Raynauds. They did this because they "did not want to alarm me".  The problem is, within the last 2 years I have had my kidney removed, developed acid reflux and an underactive thyroid. I now also suffer from fatique, joint pain, IBS and unexplained multiple enlarged lymph nodes. Whether these are all connected is difficult to tell but it is rather odd to develop so many problems within 3 years. Only now are my consultant team considering the impact of a possible autoimmune disorder and my Raynauds is now titled 'Autoimmune Raynauds' (whatever that means). This is 15 years after initial diagnosis.

So yes, things might get worse but unless you develop further symptoms, you just don't know. You may have certain markers but there's no guarantee that it will amount to anything. Even now, I do not have specific symptoms to indicate a specific autoimmune disorder so really it is a waiting game but I have a life to lead and try not to worry about these things. Yes, it sucks but it helps that I am under the care of a consultant so I know that they're not missing anything, it's just difficult to diagnose.

I understand the feeling of a 'ticking time-bomb', but there really is no way to know 100% in advance if there even is a bomb to go off. And in the unfortunate event of something developing, you really are better off enjoying your life while you're relatively healthy.

Life is a bit harder for me now but I just hope things remain mild enough for me to get on with things.

Hope that helps and good luck.

New Member

Date Joined Feb 2015
Total Posts : 1
   Posted 2/3/2015 10:49 AM (GMT -6)   
Hi, I have unsightly cuticles, overgrown, brownish spots, ragged. A manicure last me 1 week before the unsightly cuticles return. This started at age 47 (I am 70). I asked everyone in the medical field for advise no answers. Water, chemicals, housework etc. Finally, a dermatologist photographed hands and put them on internet and the answer came back dermatomyocitis with blood work sort of but not really confirming. I saw a rheumatologist and he concurred reluctantly. I live in Boston so went immediately to the Mass General Hospital Dept of Rheumatology with my blood work in hand. They looked at blood results and hands and told me I had "scleroderma". More precisely a limited form called CREST. I do have Raynaud's but that is part of the CREST. They follow me in Rheumatology, Pulmonary, and Cardiology and fortunately I have stayed the same with no progression of the disease. Unfortunately, my nails cannot be changed but I can wear acrylic nails which helps the appearance immensely and causes me no harm. So my nails can look normal and good as long as I wear the acrylics and have them done every 3 weeks. Given the terrible effects of scleroderma the nails are a small price to pay.
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