Sjögren’s syndrome?

[Phoenix51]

Just wondering if anyone has any experience of Sjögren’s syndrome? I was diagnosed ( due to symptoms, high CRP and rapid response to steroids) with GCA in January of this year. I have been tapering for the last 2 months or so. During this time I’ve also been diagnosed with glaucoma - I went to the optician with increased blurred vision and he referred me to an eye consultant. I have had dry eye for quite some time now and it causes blurred vision. Whilst reading around the glaucoma information on line I came across Sjögren’s syndrome and when I looked it up many of my symptoms matched up. I had put many of the symptoms down to side effects of the Pred but I’m now wondering if instead it might be this?

My symptoms are

Dry mouth, constantly thirsty ( GP tested for diabetes result was negative )

Blurred vision, has got worse presumed it was Pred

Increased occular pressure

Glaucoma

Dry skin

cognitive impairment ( lose train of thought/forget everything!)

Strange taste in mouth / aftertaste

Numbness in toes and fingers - diagnosed with Raynayds but not majorly affected

Fatigue ( when not on steroids)

Dry lips ( not cracked or sore)

Tremor/leg and arm weakness - put this down to essential tremor diagnosed some time ago - could still be this

Night sweats, sometimes in the day too

My age and gender

Many the above can also be attributed to Pred side effects and also hormones - I’m 51 and female- so I appreciate it would be difficult to get a clear picture.

Any thoughts from anyone or have any of you been diagnosed with SS as well as GCA?

Thank you

[PMRpro Ambassador]

There is a similar syndrome called sicca (dry) syndrome. A diagnosis of Sjogrens requires a lip biopsy to identify the antibody specific to it - sicca is all the symptoms but no antibody to be found. It is a fairly academic differentiation - most of the management is relieving the symptoms as there is a lot of dispute about the use of drugs in it.

You might find more people with more experience on the LupusUK forum here on HU - although the person who has done the most research has recently left. I have come across a lot of people with PMR with dry eyes (and other bits) - it will be part of the autoimmune aspect of the disorder without being full-blown Sjogrens.

Venus WIlliams says she has it - and manages it with a raw vegan diet ...

[Phoenix51 in reply to PMRpro]

Thank you, that’s really helpful 👍