Sjogrens or not?

I am a 53 year old from the Uk i have positive antibodies Ro and La i have had joint heat and pain with morning stiffness , irritable eyes, dry mouth and terrible tiredness for 4 years, i asked for the ANA test this year as i was just being dismissed by my GP ,they then referred me to the rheumatologist ....... the schrimers test was negative as were my inflammatory markers . 4 years ago i was diagnosed with microscopic colitis too \(mild) i still have the pain from this so feel that its all linked ?

My rheumatologist seems to think that this is not sjogrens but chronic fatigue brought on by pain? can anyone advise me please i am feeling so frustrated its making me feel like maybe i am just imagining it all ? my rheumatologist says peple can be antibody positive but not have the illness ?

many thanks Maria

19 Replies

  • Hi maria.

    Its all very complicated! I have sjogrens with swollen painful joints , muscle pain, hypothyroidism and ibs- it seems that most people seem to have a mismash of autoimmune problems which makes it difficult to an actual diagnosis. Im not very good with blood results and their meaning hopefully someone more knowledgable will be able to help.

    Wishing you all the best 😀

  • All these symptoms csn be thyroid related have u had thst tested

  • Yes all my bloods were normal including inflammatory markers the onky abnormal was antibody RO and La at high titres

  • So he did tsh ft3 ft4 rt3

  • yes all normal

  • You didn't mention whether your actual ANA's (anti nuclear antibodies) were elevated! Do you know what your result was and the number, if so?

    It's very frustrating not knowing the diagnosis as it doesn't take away the symptoms at all. Yet when the markers are non specific the doctors tend to dismiss you. I don't think many of them dig very deep to look at different possibilities. They are certainly very entrenched in their own disciplines which is I suppose natural seeing they are specialists in a certain field!

    I sent my Rheumatologist an article recently which definitely picks up on a lot of what has happened to me, yet it is from more of a neurology angle. It will be interesting to see if she just dismisses the paper or if she can see from what I have told her in the past that the likelihood of what they suggest in the paper is what is probable in my case.

    I hope you find some answers. It has taken nine years for me to be shown to be seropositive with blood tests, so at last I feel validated to a large extent.

  • Hi meg itwas RO and LA positive at 1:1,840 so fairly hi titres all my othrr markers are normal negative eye test too if anything my eyes feel gritty and run and weep.... i just hope she will opt for the biopsy to confirm as i feel lousy Thank you for your kind reply ..regards Maria

  • Hello again Maria!

    Titres tend to go by doubling, so 1:40, 1:80, 1:160, 1:320, 1:640, 1:1,280, 1:2,560 etc. Perhaps yours was 1:1,280 which is 'impressive' anyway. How can your Rheumatologist so easily dismiss this ANA along with a positive Ro and La. Oh dear!

    Yes a certain small percentage of the the population have positive ANA's but not 1:1,280 or above. In fact the medical literature indicates not above 1:640. If they do have those numbers it means that something is very likely going to happen in the future even if they do not have symptoms now!

    I think you definitely are sick! Whether it is SLE or one of the other related autoimmune conditions something is there. Were any of the other ENA's elevated?

  • No just the RO and LA but with the negative scirmer i think she thinks it is not SJS i am hopingt o persuade her to a lip biopsy i feel it is all linked to the microscopic colitis i have had for 4 years too ..;

  • Hello. I have really struggled to get a diagnosis other than seronegative, non-erosive RA (currently in remission despite high inflammatory markers) and Hashimoto's.

    I moved to a different part of Scotland - still on low dose steroids last year. The next rheumy told me that I had no systemic inflammation (despite high plasma Viscocity/ ESR and CRP). My Schirmers and saliva production were in normal range despite previous history of sicca. My autoantibodies were all negative. He said on this basis I had no connective tissue disease. I asked him if the steroids and previous years on DMARDs might have skewed my results but he said no.

    Six months later I attended a different hospital. Now off all medications including steroids and my ANA is now positive at 1:320 with nucleolar pattern. My IgA and IgG are both elevated, inflammation levels high.

    On this basis I was given a lip biopsy three weeks ago. And despite having no oral problems or swollen parotids the biopsy showed a clear positive result for Sjogren's. I see the rheumatologist in a few weeks for first time and will be very interested to learn what he thinks this all means. My main symptoms are neurological.

    It may be worth pushing hard for a lip biopsy although it is quite an invasive procedure with some risk of permanent nerve damage. Well worth it for me though - I feel vindicated at last!

  • well i hope that you get listened too at last. Its frustrating i, the time it can take to get a diagnosis ? i think i will ask for the biopsy because i know in myself i am not right ... it's really good to have so many other people who have experienced similar problems i am sure that these conditions are more abundant than we like to think , i just think diagnostics are still a long way off picking people up correctly ......thank you.....


  • I've read that Sjogrens may not show up in tests for several years and that only 60% of patients have elevated ANAs. An optometrist told me the Schermers test is not very accurate and has been replaced with another eye test. I'd try another Rheumatologist or wait a while and have the tests again elsewhere. Dr told me its very hard to diagnose.

  • thanks Ruth it is so reassuring to know its not just me who is having trouble LOl x

  • Yes they finally decided that I have 'secondery Sjogren's and I see a Rheumatologist at Oswestry Orthaepedic Hospital. There isn't much they can do but, as ever, manage it to prevent damage so I use eye drops a few dozen times a day and at night apply Lacri-lube which is a waxy ointment which lasts. I wake up and apply drops in the early hours though. For dry mouth I have Biotene Gel which makes a big different at night. All on prescription. One of the consequences of dry mouth was that I have not had my teeth cleaned at the dentist for a decade now. Not enough saliva to make deposits... They can't say whether the SS is a result of my BI but Occam's Razor would suggest that these odd neurological conditions are linked. It does seem to me that the medical specialities are so compartmentalised that they do not address the whole complex picture and hence are not in a position to learn...

  • I was recently told by an Optomertrist in Brisbane that the Schirmers test was not very accurate and has been replaced with another test. Also I have read that the blood tests only show positive in about 60% of cases and you should see a dentist for a Saliva test. So hang in there and try another Rheumatologist. I've found by experience that the harder it is to get in to see one, the better they are.

  • You can have the symptoms 6,8 or 10 years before it shows in a blood test, all the symptoms you are having sounds like sjogrens even colitis and fatigue, if you have Intergreative Medicine Doctors in the UK you need to see one they do different blood tests and work on a cellular level address the symptoms and not the disease.

  • Dear Maria,

    I am the same age as you, and have had a similar experience recently. I had positive ANA, ENA and RO antibodies . Rheumatlogist diagnosed Fibromalgia and said that the markers were not significant enough to take a diagnosis for sjorgens or lupus.I was told the drying up of eyes, mouth and vagina is just normal for post menopausal woman. I pushed for a second opinion, GP was not keen, but went along with it, as he thought I needed to accept the diagnosis . The result from the second opinion is that I have sjorgens syndrome and I have signs that it is affecting my kidney function. The second rheumatologist is currently doing follow up tests, so I will know more over the next few months. I am relieved that I am finally being taken seriously , as this is affecting every aspect of life . I was beginning to think I was going slightly advice, if you have doubts or feel fobbed off, get a second opinion.

    Good luck , I really feel for you.

  • Thanks its good to know its not just me xx

  • Wishing you all the best , it makes such a difference when you find a good doctor😃

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