new to sjogrens

Just been diagnosed after having a 4th nerve palsy in my eye. Hospital did a blood test which came back positive for DNA antibodies and so I saw a rheumatologist today who said I have SS. I have dry eyes, dry mouth and before xmas was investigated with a camera down my throat because food was getting stuck in my throat and on the way down. It all now seems to make sense. The doctor talked about oral hygiene, drops for eyes and nothing about food getting stuck because I am now on Omeporazole. Didn't offer anything other medication and not seeing him again. Is this normal? Will my own GP know all about this? I am in the UK. Any help or advice for a newbie like me?

4 Replies

  • Hi, I'm in the UK too. I have Primary SS and blepharitis caused by meibomian gland dysfunction. I use Supranettes sterile eye-cleansing wipes ( nice & soothing) then Systane drops, as recommended by my eye doc. I'd been on Hypromellose but had to stop because they caused awful flares. But... I have to buy the Systane, can't get it on prescription. Re: dry mouth, I chew sugar-free gum all day. I got told not to drink lots of water as it washes your good spit away, but chewing stimulates your salivary glands so keeps them working much longer. I only get a really dry mouth overnight now. It might be an idea to make an appointment to see your GP anyway, to find out what your rheumy said and also to ask about possible meds. That's where I'm going next week. Good luck. :-)

  • Thanks for the reply. Not sure I understand most! Very new to syndrome. Have dry eyes and mouth. Do you have muscle pain? My feet hurt and I'm not sure if it is anything to do with sjogrens. Have reflux and take ameprazole each day. Have also had food getting stuck in throat and food building up so all I can do is bring it back up. Presume this is a symptom? Had endoscopy to investigate before I was diagnosed. Diagnosis made after being tested positive for DNA antibodies after getting 4th nerve palsy. Rheumatologist thinks this is a false positive and needs test done again. Totally confused.

  • Yes, muscle pain, joint pain, dreadful fatigue and the feet - yes, I feel as though I'm walking on pebbles, and raw flesh, so painful. I'm ok with reflux but it started in my 30s, had it bad for about 4 years then it stopped thankfully. I sometimes get nausea and a bit of an off tummy so take Gaviscon when that happens. I believe only about 50 - 60% test positive for SS antibodies, ( about the same number for sufferers of RA) so don't let your rheumie fob you off if that happens yet you still have all the symptoms.

  • I have a website with a wealth of information as well as we have just finished a series of 12 videos Sjogrens Solutions also on the website.

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