Sjogren's or Sicca syndrome

[Maggiet]

Hi all. I've had various tests ordered by my consultant neurologist as I have neuropathy and 3 autoimmune conditions along with fibro. My mouth was examined and my salivary glands aren't producing enough saliva and I'm having a lip biopsy tomorrow and an US scan on Thursday. I saw an ophthalmologist last Friday about my dry eyes and he diagnosed Blepharitis. I'm quite confused about it all. Any info on reliability of Schirmer test, lip biopsy or US scan gratefully received. Blood tests are normal. Thank you. I'm in the UK.

[jakiblu]

HI I have severe dry eye also. i have lupus, sjogrens disease, rhuematoid arthritus and fibro. I have a great eye doctor and i currently had my bottom tear ducts closed. it helps. i also take cod liver oil which helps my eyes. fish oil or flax seed is helpful too along with medication called " pilocarpine" it helps me have saliva and the moistness i need to keep my mouth and eyes moist. and restasis is usually prescribed. its no fun hang in there.

[Maggiet in reply to jakiblu]

Thank you for replying. I think it all depends on the biopsy this morning. The ophthalmologist has told me to eat oily fish which I hadn't been doing as I'm a vegetarian!

[Hidden in reply to Maggiet]

Good luck with lip biopsy - it’s the only definitive test for Sjögren’s. Mine surprised everyone but me by being 100% positive! They were surprised in my case because my parotid US was normal. Schirmers is painful and unreliable - tear break up test done by most UK opticians is much more reliable and not uncomfortable at all.

Most of my worst symptoms are neurological rather than Sicca which I manage quite well.

[Maggiet in reply to Hidden]

Thank for your reply. Yes the Schirme test isn't pleasant and it gave a different result to the last time!

[jaki1963 in reply to Maggiet]

I'm also a pescatarian. i eat salmon. but i do take the cod liver oil it helps. my eye doc does a procedure called prokera

it heals my cornea. just research and find what works for you. good luck

[Maggiet in reply to jaki1963]

Thank you x

[25clai]

I got diagnosedas a result of blood tests / schirmers test. Positive RO antibodies/ immunology plus sjorgens affecting my kidney function/ anaemia.

I also have problems with my joints / dryness throughout my body. I use intense eye drops / gel. It did start with sic a symptons about 8-10 years ago, but that is quite common as we get older, so nothing flagged in spite of many chronic health problems. I only got diagnosed as a result of a total Health meltdown. Like many others it took a long time to get the diagnosis.

Thankfully with treatment, my kidney function has improved. I only had a lip biopsy after I had been having treatment for 8 months. The result was negative, but it has been disregarded by rheumatologist/gp. I have been told I will need lifelong treatment and cannot promise that kidney malfunction will not return at some stage ( best not to think about it).

I hope you get support and have a helpful GP.

[Maggiet in reply to 25clai]

Thank you for the info. I've literally just had the lip biopsy - ouch! I'll have to wait 4-6 weeks for the results so it'll be after Christmas I would think.