ANA nucleolar pattern 1:320, ENA negative and dsDNA negative - scared about nucleolar pattern

[Greenapple1]

Hi there. I hope you don’t mind me asking a question but I’m very frightened and confused right now. After months of weird random symptoms which the GP and various consultants haven’t been able to explain, I had some more blood tests taken two months ago which I’ve now found have shown a result of ANA 1:320 nucleolar pattern. Negative for ENA and ds-DNA. My GP hadn’t even raised it with me but I found out through a gastro consultant I saw who flagged up to my GP that maybe I should see a rheumatologist. I’ve now got a rheumatology referral but I’ve been worrying myself silly looking up what the nucleolar pattern is associated with. I understand I need to have some more specific scleroderma screening panel as the ENA panel is very limited but I’m just trying to understand if a scleroderma diagnosis is inevitable either now or in the future with the nucleolar pattern? I understand it depends on symptoms as well and I do have some - significant weight loss, chest pain, heartburn, neck pain, muscle / hip joint pain, a pain in my tummy and diverticular. I do not have any skin thickening it classic Raynauds (I can get cold hand and feet, they don’t go white though). I just don’t know how worried to be about the nucleolar pattern. Thank you for reading this and any help you can give me.

[trunchalobesity]

Don’t worry about the unknown. Please wait for your rheumatology referral .

I’ve had scleroderma for 17 years and am still going strong. We deal with symptoms daily and some are unpleasant but the most important thing is to remain positive.

Dr Google and vouch consultants no matter how well meaning are not dealing with you and your results. Scleroderma is notoriously difficult to diagnose even with the scl70 antibody.

If you are diagnosed by your rheumatologist then they should offer you support via specialist nurses or SRUK.

Good luck x

[dianekjs]

Hi Greenapple1, I’m the Director of Education for the Scleroderma Education Project as well as a scleroderma patient myself and may be able to help. First of all, ANA staining patterns are considered unreliable for diagnostic purposes and should generally be ignored, it is individual antibody testing that is important. Second, be aware that scleroderma is a clinical diagnosis based on an accumulation of specific symptoms, it cannot be diagnosed by labs alone. It is possible to have scleroderma antibodies and not have or ever develop the disease. The three most common scleroderma antibodies are anti-SCL-70, anti-centromere, and anti-RNA-polymerase III, and if those haven’t been tested yet that should be the next step. If those are all negative, there are five additional rarer scleroderma antibodies that can be tested. The scleroderma antibodies are nearly always mutually exclusive, meaning that you would typically only be positive for one. About 95% of confirmed scleroderma cases have Raynaud’s, usually as an early symptom. Other common early symptoms are swollen or puffy fingers and acid reflux. Skin involvement is not a requirement for diagnosis. Last but not least, the vast majority of general rheumatologists know very little about systemic scleroderma, including how to properly test for it and diagnose it. Hopefully the doctor you’re scheduled to see will be more knowledgeable than is often the case. It is strongly recommended to get a referral to a true scleroderma specialist at a scleroderma research center when scleroderma is either diagnosed or suspected, it can make a world of difference in optimizing outcome of this extremely complex, multi-system disease. You may find the Scleroderma Education Project website to be a helpful resource for you, it is full of accurate and up to date information about scleroderma. I would start with the new patient guide and FAQs even though you may well not have the disease as they may be able to answer your questions as they arise.

sclerodermainfo.org/guide/

[Hidden in reply to dianekjs]

Hi Dianekjs and Greenapple1. I just posted here myself but also read through recent posts and noticed this one because I too have 1:320 ANA with nucleolar pattern. I have seronegative Sjögren’s (diagnosed by a 100% lip biopsy) and Hashimoto’s plus was previously misdiagnosed with RA.

I also have secondary Raynaud’s, small fibre neuropathy everywhere and reflux plus gastritis and severe chronic constipation - causes apparently by Sjögren’s. Plus I have Erythromelagia.

My last antibody tests were done a year ago - a few months off maximum dose of mycophenolate. My +ANA had dropped to a weak positive - still nucleolar pattern and I have high systemic inflammation and high immunoglobulins as usual - all part of having Sjögren’s. However I had my first ever weak positive on my ENA panel for Anti-Th/To antibodies (anti-Th). The vascular dr I see says this is probably a false positive - although I don’t quite see how this can be a false positive reading yet he is a stickler about me being seronegative due to no anti Ro or La antibodies for Sjögren’s? False positives but not false negatives?🤷🏼‍♀️🤔

Anyway I have just told my updated story here so won’t hijack your posts with further questions - but I was very interested to read about the 5 additional rarer, mutually exclusive antibodies - presumably Anti-Th/To antibodies (anti-Th) is one such?

I certainly feel that I have more going on than my Sjögren’s alone explains, as do my GPs and dermatologist. But the vascular dr is adamant because of normal nailfold capillary test in March 2017.

Hey ho I guess it’s a question of wait and see really? And try not to worry (says the worrypot of the century!) - I’m guessing it’s unlikely that you have any form of Scleroderma without Raynaud’s because about 95% of sufferers have Raynaud’s I believe? Or you could be like me and have seronegative Sjögren’s as this might explain the symptoms you describe. The only way to confirm if you don’t have antibodies is by lip biopsy - which people are finding increasingly hard to get referred for these days as it’s a little invasive and there are no real disease modifying treatments for Sjögren’s anyway.