LUPUS UK

Shögren’s - think I have it

Following up the Lupus post regarding the above, I ticked every box and an very surprised that my rheumatologist and doctor has not picked up on this.

I have been treated for dry eyes for 4 years and mentioned my dry mouth for the same length of time.

My dry mouth is terrible and I had thought it was due to my diabetes but it has been confirmed it isn’t.

Despite describing all these symptoms this week, my GP told me to have nothing to drink after 7pm at night until the next morning, perhaps a light mouth spray if I am desperate. I was accused of imagining the dryness even though my mouth was so dry it felt like my tongue was glued to the roof of my mouth.

Any suggestions as to what I should do?

6 Replies
oldestnewest

Go to see your optician and dentist and get tested by them for dryness. Get them to write down their findings and ask your rheumatologist or show your GP. Ask to be tested for Sjögren’s antibodies and if necessary or you really want to know then request a lip biopsy to confirm.

Meanwhile you should ask for preservative free drops and Salivex pastels plus Oralieve gel on prescription . There are many reasons for Sicca symptoms such as medications, ageing, thyroid conditions etc. But if you have Lupus or RA then you may well also have secondary Sjögren’s. Some are even misdiagnosed with Lupus or RA or MS when they actually have Sjögren’s. I was!

3 likes
Reply

Thanks. I do have Lupus and RA and currently on Hylo Forte for my dry eyes and Glandosane recently for my dry mouth.

Reply

In that case you probably have been classed as having secondary Sjögren’s or Sicca Syndrome. The treatment options for RA and Lupus are much greater than Sjögren’s which has no targeted treatment. They usually only make the effort to diagnose Sjögren’s if it’s your main disease.

1 like
Reply

Hi Iona467,

According to The Lupus Encyclopedia, Sjögren’s syndrome “affects the lacrimal glands, which secretes tears, causing dry eyes, and the salivary glands, which secrete saliva, causing a dry mouth”. The encyclopedia states that one key symptom of dry mouth in Sjögren’s syndrome is ‘tongue sticking to the roof of the mouth’.

The NHS Choices’ website provides information on the diagnosis of Sjögren’s syndrome. To find out how you can be tested, click here: nhs.uk/conditions/sjogrens-...

We published a factsheet on ‘LUPUS: The Mouth, Nose and Eyes’ which you can read here: lupusuk.org.uk/wp-content/u...

To view our blog article on 'coping with dry eyes & mouth', click here: lupusuk.org.uk/dry-eyes-and...

For more information you can visit the BSSA (British Sjögren’s Syndrome Association) website here: bssa.uk.net/

You can request to be tested for Sjögren’s syndrome at your GP.

If you are unhappy with the performance of your GP, you can request a referral for a second opinion. To find out how you can do this, please click here: lupusuk.org.uk/getting-the-...

Please let us know how you get on, wishing you all the best.

2 likes
Reply

Thank you. I see my GP next week so will find out then.

Reply

Thank you, that describes me perfectly. Today my dry eyes are so bad they are red with soreness, I have an eye spray but relief is temporary.

Reply

You may also like...