testing for Sjogrens

[TheRedOnes]

hi I’ve just been told I need a blood test to confirm if I have Sjogrens as I have a lot of symptoms and have been ill for such a long time. Can you still have Sjogrens even if your blood test comes back negative? GP says I’ve got an autoimmune condition for sure but they don’t know what it is. Rheumatology waiting list is so long -I’m on it but I’m struggling so much with every day stuff and this last flare is now entering week 7

[dg70]

Yes my bloods are negative and I was diagnosed by one of the country's leading experts dr price as having sjoggrens from my symptoms. She also did the schirmers test which showed I had very few tears so that helped. I had positive dsdna only once so she diagnosed lupus from that. Find a rhuemy that's not entirely stuck on positive bloods for diagnosis as many of us come up negative. If you're exhausted most of the time, dry mouth, eyes, nose, down below area, cough, hard to swallow, kidney stones, you probably have it. Don't give up looking for a diagnosis, it took me 10 years but when you know somethings wrong go with your gut. Push hard for a diagnosis. Go private if you can afford it. I did at first. Cost me £150 for half hour but best money I've ever spent.

[Chris21]

Hi The RedOnes, I’m not sure if a blood test would show you if you have sjogrens. I had my diagnosis confirmed by paper strips under the eye lid to see how much tear drops there were. I know some people have been diagnosed by having a lip biopsy. Blood tests tend to be just a part of auto immune diseases, which then leads on to further testing. Most have had a diagnosis from rheumatology but some have had sjogrens diagnosed by dentists.

The problem with these auto immune disease they all have similar traits. My diagnosis is lupus sle/sjogrens I never know which is causing what pain. I personally think sjogrens cause me personally more problems than any of the other conditions. (Some others have also been added) I’m not a medical person but think blood tests only show where something isn’t quite right and an indicator of where/what they should be looking at in the body. Scans and biopsies can also play a part in diagnosis.

I see from your previous post that you are waiting to see rheumatology, it is frustrating having to wait for nhs appointments. I’ve just been re referred to thoracic and have been told they won’t see me until 8 months time which will be next may! Have you actually phoned appointments to see how long it’s likely to be? I know your not to phone until oct but I personally would want to know how much longer the wait will be after oct.

I hope the GP can help in the mean time.

[Amakura]

Similar to other comments, I've had a schirmers test, ultrasound of my lymph glands and a lip biopsy. However, saying that I have read there is antibody test that can give an indication of a disposition to Sjogren's.

[Krazykat26]

When I had initial bloods done for lupus I had a positive anti LA and anti RO antibodies. A few years later I was seen by rheumatologist (I was initially diagnosed by dermatologist) who did the test with the paper in the eyes and under the tongue. After that appt his letter said probable Sjogrens as I had scanty saliva n dryness in the eyes and he mentioned these two blood results from my initial testing. This gave me the diagnosis of Sjogrens. 💜🌈🦋

[Krazykat26 in reply to Krazykat26]

Rheumy also noted that my initial ANA test was speckled which I've recently found out is indicative of Sjogrens as well as lupus . So I believe I've had Sjogrens as long as I've had lupus .

[OldTed60]

The Ro and La antibodies are mostly associated with Sjögren’s although can be positive for Lupus too I think. Mine were negative, which is also common in Sjogrens I believe - 30- 50% of cases are negative for antibodies. I was initially diagnosed with RA so when I reported very dry eyes as found by my optician a year after onset, my GP prescribed eye drops. I eventually moved and was then suffering from neuropathy and Raynaud’s so was diagnosed by lip biopsy. Finally I showed up my only antibody which is for systemic sclerosis. This wasn’t enough to diagnose me but eventually it showed up very positive in other tests and symptoms so I now have both.