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Sjogrens Syndrome

(13 Posts)
MissAdventure Mon 19-Aug-24 14:22:24

My gp kept dismissing my eye problems, and I ended up with a huge ulcer behind one eye.

I've spent the last two years having all sorts of treatments and drops.

I'm discharged from the eye clinic now but my eyes have been left red, and bloodshot looking, permanently.

I suppose I can still see out of them, so that's something positive.

Good luck for tomorrow, and please do report back, because it's all newish to me, too. smile

Floradora9 Mon 19-Aug-24 13:20:14

Thanks to everyone who replied . At my last appointment my GP just said there was no test for this and once again dismissed my problems. I am seeing her to-morrow so will have another try . My dry eyes have already been picked up at the eye clinic I go to so I get lots of drops to use for this . As for the joint pain I just get strongish painkillers which stop me sleeping at night.
I will report back after to-morrow.

Marydoll Tue 06-Aug-24 15:48:06

I believe there is no definitive test for R.A and Sjogren's.

Rheumatologists take into account many factors and look at the overall picture.

MissAdventure Tue 06-Aug-24 15:37:52

It was opthalmology who diagnosed me with sjogrens, even though the rheumatology bloods and a lip biopsy didn't show it.

Sparklefizz Tue 06-Aug-24 06:18:00

My blood test was Sero Negative last year and I was diagnosed by a rheumatologist with Sicca Syndrome and Fibromyalgia. I have dry eyes, dry nose, dry mouth - dry everywhere - and a lot of aches and pains.

DrBenjaminMc Tue 06-Aug-24 04:25:22

It sounds like it could be Sjögren's syndrome. Symptoms often include dry eyes, dry mouth and joint pain.

MissAdventure Mon 05-Aug-24 14:29:29

I have sjogrens, too, along with another autoimmune condition.

Marydoll Mon 05-Aug-24 14:16:21

I was diagnosed with R.A over thirty years ago and with Secondary Sjogrens. despite being sero negative.
About ten years ago, I had an unmanageable major flare up, which resulted in having to give up teaching.
After years of being sero negative. I tested sero positive!!!

Babs03 Mon 05-Aug-24 13:30:01

I had tests for this years ago, no inflammation was detected in a blood test so was referred back to my GP. I have a ‘dry’ everything, use moisturising eye drops which help, but continue to have rogue joint pain and unexplained feelings of malaise together with a low level fever. Have given up doing to docs, feel they must have me down as a time waster, just get through a lot of Voltarol. Is depressing though.

DollyRocker Sat 03-Aug-24 11:33:31

Sorry just reread your post and it says blood tests show no inflammation but are the right tests being done? Try hylo forte or hyco san extra for dry eyes. Biotene for dry mouth & a whole food diet, lots of fresh ground chia and flax seeds plus lots of filtered water.

DollyRocker Sat 03-Aug-24 11:30:03

I have Sjogrens, you need a rheumatoid factor test, anti nuclear antibodies (ana) test, anti ss-ro A & anti B ss-la tests. Other autoimmune tests to rule in out other similar connective tissue diseases like rheumatoloid arthritis and lupus. Inflammatory markers ESR and CRP. You can have sero negative autoimmune conditions too unfortunately that can make dx tricky & other tests will be required.

Lilyslass Fri 26-Jul-24 10:44:46

It’s very difficult to get a diagnosis of Sjogrens, but important that you do as the long term effects can sometimes be bad. It might help to get a diagnosis of something called Sicca, which is like a milder form of Sjogrens and requires a lot of the same care. Please push for some help and there is a Sjogrens Society which you can find online, but get your GP onside first, especially concerning the joint pains. Your optician and dentist might be able to reassure you about the dryness. I have no medical knowledge, but I do know there are lots of different mitigations available for the drynesses and some are easier to use than others. Good luck and don’t be fobbed off with the “just your age” explanation. Even if it is just that, you deserve to be comfortable.

Floradora9 Thu 25-Jul-24 15:50:24

I had never heard of this until recently and wonder if I am suffering from it . Could anyone who has it describe their symptoms . I have crinically dry eyes really dry mouth and joint pains everywhere . The joint pains are always in pairs like two knees , wrists etc. and blood tests show no inflamation.