Sjogren syndrome positive centromere?

[Buttsy]

Good Morning all,

Hope you are all well.

I am currently experiencing Sjögren symptoms, Dry eyes ,nasal passage , mouth and other areas, outside of eyes skin very dry,cracked and sore.

I went to the optician who said my eyes were very dry and advised drops and heat packs, also to go to Dr for diagnosis.

I have been to the GPs who said it possible it sjogrens.

He as run ANA and ENA blood test. ANA positive for Centromere as always, but no ENA positive so my question is does anybody have a sjogrens diagnosis with just a centromere positive antibodies ?

I have looked it up and can see a positive Centromere can indicate Sjogrens but without the more specific markers ,will this be recognised , I definitely have the symptoms and have been having them for about 10 weeks now.

I am using eye drops and Dermatologist gave me cream for the outer area which as helped relieve the cracked skin around eyes.

Any insight would be greatly appreciated.

[OldTed60]

Hi. I have a rare SSc antibody rather than Centometre, anti Ro or La. However I was diagnosed with “primary” Sjogren’s in 2016 by lip biopsy. My symptoms began in 2011 after sudden onset bilateral joint pain in hands, wrists and knees, along with burning soles. Initially I was misdiagnosed with RA (seronegative) and my ANA wasn’t even tested - just Rheumstoid Factor which was mildly positive and anti CCP which was negative. Soon after this my Sicca symptoms started along Raynauds and small fibre neuropathy.

I was then told RA with secondary Sicca (Sjogren’s) and Raynauds. By this time I was on Methotrexate and Hydroxichloraquine and on off Prednisolone so suspect this probably skewed results for ANA and ENA antibodies - all either borderline or negative.

It was only when I was taken off all these medications that my ANA tested very positive with a nucleolar pattern, pointing to scleroderma but also Sjogren’s. At this stage I was offered a lip biopsy which showed 100% positive and I was rediagnosed with Sjogren’s. This prevailed for about 4 years until a Sjogren’s expert rheumatologist rediagnosed me with overlap SSc, (Sjogren’s predominant).

Now I’m officially diagnosed with Systemic Sclerosis as my main systemic autoimmune and my Sjogren’s has been re-listed as Sicca Syndrome which is very confusing! I’m not in favour of primary or secondary in context of Sjogren’s but I definitely have both so not sure why mine has been downgraded now. But I do get prescription eye meds for it and it’s been much better since I started taking Mycophenolate. My go-to treatment is Hylo-Night ointment which I often use during day too in tiny quantities - along with Hylo Forte drops and saliva gel, Xylimelts etc. My terrible dry mouth is the worst symptom I have to live with. Sorry for such a long-winded reply but it’s been a rather long diagnostic journey!

[Buttsy in reply to OldTed60]

Hi OldTed,

Thank you, for your response, so you also didn’t test positive for anti Ro or Anti La or as sometimes called antibodies to the SS-A or SS-B. When I went to Gp they looked up what needed testing and came up with these. But it seems like what you say and reading more on the internet that it isn’t just this test.

I think I may have to see if they will do further testing like you.

I do feel they sometimes they don’t understand or think it’s all cut and dry .with one test being the answer.

I am finding the drops and cream helping the eyes but think I need more medication/ cream elsewhere.

I think it is a long journey and quite complex.

Take care !

[SBQ1971]

I have LSsc with dry eyes and mouth and use the Hylo eyedrops without preservative. . Sjogrens was a sort of add on when I went to the Royal Free years ago, but I don't know whether I have actually had blood tests for it. I think they can diagnose much more accurately for the different factors nowadays than they could 30 years ago, when I was first diagnosed. I remember Dr. Pauling giving a presentation about new diagnostic blood tests , at one of the Conferences, and being very excited about it. Keep warm every one, it's cold today!!