1. Community
  2. Bones, joints and muscles
  3. Sjogren's Syndrome

Blood test for Sjogren's

Posted , 4 users are following.

AndreaB1967
AndreaB1967

I was tested for Sjogren's due to my eyes being so dry.  I was negative for SSA and SSB  but my ANA was 1:80 w/ the hemo pattern.  I have read that anything less that 1:100 on an ANA test you can rule out CTD.  The only symptom I have is dry eyes.  Every now and then my feet tingle a little but that has been going on for as long as I can remember.  I go have anti thyroid antibodies and have been diagnosed with Hastimoto Thyroiditis.  So with only the ANA being 1:80 and only realy symptom dry eyes (mainly the right one).  Do you think I should see a Rheumo Dr??

0 likes, 14 replies

14 Replies

  • lily65668
    lily65668 AndreaB1967

    Posted

    Hi Andrea,

    Depends whether you have any rheumatic symptoms. I'm assuming you're already on thyroxine for your Hashimoto's. The tingling feet sounds like the peripheral neuropathy associated with Sjogren's syndrome too. I've had a lot of problems with tingling feet and hands in the past though that's OK at the moment.

    However, there's no cure for SS, and no treatment other than symptomatic (unless you want to wreck your health by going on long-term steroids) so I can't really see the point of seeing a rheumatologist. Make sure you look after that dry eye though. I'm assuming your ophthalmologist is prescribing drops or whatever.

    Sjogren's symptoms come and go over time and often disappear altogether for quite long periods. There may well be other opinions, but I'd say wait and see how the condition develops and address individual symptoms as they arise. And maintain a healthy lifestyle of course.

    • AndreaB1967
      AndreaB1967 lily65668

      Posted

      Thank you Lily.  No  I am not on anyting for the HT.  Even though my antobosies are elevated indicating HD  my thyroid is in range for right now.  Also I have read that the tingling can also be caused by HD but either way  I woyld not want to take any sort of medicine for that cause I do not want to take seizure meds).  I realize  there is no cure Sjogren's and you only treat the symptoms  but if I had it that would explain how my eyes got so dry.  So this can go into remission ?  I have not read that.  I know you have what is called flare ups and stress makes the flar ups worse.  About how long can a flare up last ?  My eyes were really dry for about 6 months in 2014  then they goe better for about 7-8 months in 2015  then bad again  now a little better.  So frustrating !!
    • lily65668
      lily65668 AndreaB1967

      Posted

      Yes, Andrea, all auto-immune conditions are known to swing between flare-ups and remissions, even the more serious ones like multiple sclerosis (in the earlier stages anyway). I had one SS symptom or another non-stop for the first 15 years after it started when I was 50. I mostly noticed I didn't get them all at the same time, though the worst of the peripheral neuropathy - complete loss of sensation in one of my big toes - persisted for more than 10 years. I'd go through a few months of dry mouth, then that would clear up and I'd get Reynaud's, then it would be a year or so of dry eyes, and so on and so forth. Then, at around age 65, most of the symptoms disappeared! All I was left with was tendinitis in both upper arms, which has been a bit of a nuisance ever since. After six years with only the tendinitis and occasional dry eyes I was just starting to congratulate myself, when I had a nasty fall on a down escalator nearly a year ago. It was probably the shock, but the whole thing is back with a vengeance now, including the worst RA I've had since that started 35 years ago. But I'm not downhearted, as I'm pretty sure it will go into remission again eventually. In fact, a lot of my symptoms have started getting better in the last month or so.

      Don't let your doctor make you drag on for too long without prescribing a top-up dose of thyroxine. I realise there are reasons for caution, but mine was really far too cautious. The problem was that although my TSH (thyroid stimulating hormone) was well above the limit for years, indicating that my pituitary gland was working overtime to keep my thyroid on track, my T4 levels were always just above the minimum. Meanwhile, I was losing a lot of hair, had totally lost my eyebrows and was suffering quite severe fatigue. Under pressure, she finally agreed to a relatively new urine test (which had to be sent off to Holland) which threw up a degree of "covert hypothyroidism". I've been on a low-ish dose of thyroxine for six years now, and feel much better for it. My hair and eyebrows didn't grow back - they never do - but at least I'm not losing any more hair now and my energy levels are higher.

      I always find it's best to try not to worry too much about my symptoms and just treat them as they arise. In any auto-immune condition, the more attention you put on your symptoms the worse they seem to get. I know how annoying dry eyes can be but hang in there - it won't always be as bad as it is now.

  • jordan58854
    jordan58854 AndreaB1967

    Posted

    Hello. So many people have different opinions about the ANA and it can revert to normal. I agree with the other post and thing that you should just find a good eye doctor to make sure the dryness is not causing other issues. Some people do not like restasis because it could make you sick. The most important thing is that you get check ups and watch your care very closely just like anyone should do. Do not eat sugar at all. Use kelp flakes instead of salt to improve the health of your thyroid with the natural iodine contained in the kelp. Sodium is terrible for your health in large quantities. See the proper daily amount for your weight. Drink water with a little lemon so it is alkaline not acidic. Sleep. Exercise. Take a gentle organic multi vitamin. Get vitamin D and eat calcium. Most of all, decrease your stress. Mine came on the first time I let myself experience out of control stress. I was upset about something at a job that was pretty terrible, but when I look back, I should have just laughed and quit. Instead I got traumatized and quit. So really, what was the difference. It was not worth my health but I did not know that at the time. Know that most employers don't care, family and friends can be selfish and zap your energy and last nerve. Protect yourself from everything and everyone who does not care about you. If you feel like you want to raise your voice, turn, walk away and watch a funny video the first chance you get. The people on this forum care very much about you staying healthy. Please stay in touch. Peace!
    • lily65668
      lily65668 jordan58854

      Posted

      Just in case anyone is confused by the following sentence in Jordan's post: "Drink water with a little lemon so it is alkaline not acidic." Lemon juice of itself is, of course, acidic and not alkaline, as are most fruits. (Highly acidic - I rub the kitchen taps and the draining board with half a lemon to descale them in the hard water area where I live!) However, once metabolised, all fruits actually leave an alkaline residue in the body, which is beneficial.
    • shaq26875
      shaq26875 lily65668

      Posted

      I hve just learnt something new about fruit acid and alkaline residue. Thank you Lily.

      ​i was diagnosed with sjogrens by a rheumatolgist (i was reffered to him by a pulmonologist who I was reffered to as a chest CT scan showed small lesions in my lungs and by that time I also had non itchy non painful lesions ..which turned out to be Pityriasis Roscea) at that time I also had a dry mouth and intermittently swelling of small joints such as knuckles , wrists and painful knees ...he diagnosed Sjogrens and blood tests showed  saliva antibodies.  after about 4 /5 months my mouth was back to normal.. I stopped the Plaquenil....I still get  swelling  of knuckles and wrists which is painful and tingling extremities  but dont take anything for it.

      ​i take Vitamin B complex,  when I remember and try and eat healthily (tho' dont deny myself anyhthing I fancy) .

      ​my only concern is does sjogrens get worse over the years?? and especially if I dont take the Plaquenil during a flare up such as swollen knucles??

      ​by the way I never had dry eyes.

    • lily65668
      lily65668 shaq26875

      Posted

      I'm sure there will be differing opinions about this, but my own experience is that Sjogren's gets less severe over the years. I started getting symptoms at age 50, was diagnosed at 60 and went largely into remission at around 65. This lasted about six years, but in the past year symptoms have worsened again, possibly as a result of shock following an accident. However, I'd say on balance not as bad as they were 20 years ago.

      I don't have too many problems with dry eyes these days, but this was a serious problem in the more acute phase 20 years ago.

      I don't have any personal experience of Plaquenil. However, my gut feeling is that it doesn't have any long-term curative effect, so probably wouldn't make too much difference either way to the long-term course of the condition. Once again, others will probably be better able to advise you on this one.

    • shaq26875
      shaq26875 lily65668

      Posted

      thanks Lily that kinda justifies me stopping Plaquenil (even tho' the rheum was a bit surprised that I had stopped and advised me to start taking as soon as syptoms returned)
    • lily65668
      lily65668 shaq26875

      Posted

      Well, don't take it as gospel from me!cheesygrin I'm sure there are other opinions on the subject. Maybe you could give it a trial yourself? See what happens if you don't take it for a while? You can always start again if necessary. I do know it causes some unpleasant side-effects in some people, but these things are very individual.

      I've never taken any meds myself, apart from homeopathy and supplements (fish oil etc.) even during painful flare-ups of RA and tendinitis. The only prescription item I take is thyroxine for a mildly under-active thyroid - which is also quite common in SS - but that's not really a medication, just a synthetic top-up of a hormone my body no longer produces enough of. My problem is that I'm a former nurse, albeit from way back when, and I've seen too much of the chain reaction of medication > side-effects > more medication to counteract the side-effects > clashes and interactions between the different meds etc.

    • shaq26875
      shaq26875 lily65668

      Posted

      I have stopped it ..as I thought I had a side effect from it....a runny nose for no apparent reason.... and thou my knuckles' swelling come and goes I have resisted from taking the Plaq....

      ​Have being a nurse does seem to have a bad side effect...makes you knowledgable....ignaroance maybe bliss? smile  

    • lily65668
      lily65668 shaq26875

      Posted

      Oh no - I think knowledge always beats ignorance hands-down when it comes to your own body. And the great thing is, it's available to everyone these days via the internet, provided you do your research carefully and don't take things out of context.
    • jordan58854
      jordan58854 lily65668

      Posted

      Yes, that is correct. When water with lemon is metabolised, it becomes alkaline.

       

  • jordan58854
    jordan58854 AndreaB1967

    Posted

    Hello All.

    I was told by one of the top SS doctors that Plaquenil is an older drug (first prescribed in the 50s) for malaria. He said the drug is used as an anti-inflammatory but very toxic to one's system. He also said that over time it can be so toxic that it could cause liver damage. I know someone who uses the drug and says she has had no adverse reactions. I agree that a more natural way to reduce inflammation would be less worrisome--stopping sugar, taking fish oil, etc.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.