Sjogren Syndrome

[Gillyg]

Could someone tell me if you know have a right to see an eye specialist if you have Sjogrens Syndrome. I asked my Rheumatologist and was refused saying it looked like I was doing everything I could do myself so there was no point. I also take Plaquenil for my Lupus which they are insisting I cut down on. I have agreed to have a little reduction so I am not being awkward but my eyes are so dry and I have tried allsorts. I thought I had read it somewhere you could be referred . My optician is the only one trying to help but obviously I have to pay when I see him. Anyone help me. I am seeing someone next week because of the dryness in my mouth but that was the dentist who sent me. Thank you.

[Hidden]

I’m a bit confused by some things you say but it may be different for me in Scotland. Your optometrist should be qualified to decide if the severity of your dry eye warrants an ophthalmology referral I believe. For instance most cannot or don’t want to insert punctal plugs and they can’t prescribe the immune suppresant eye drops. But otherwise most should be able to manage Sjögren’s dry eyes and can write to your GP requesting they prescribe specific eye drops,

Ophthalmology clinics can be totally overrun as mine is (ageing population - cataracts, glaucoma, macular degeneration, uveitis etc) and they don’t really bother with dry eye disease or Sjögren’s as long as you haven’t got corneal abrasions and your eye drops are working.

You should not have to pay to see an optician under NHS unless you are buying glasses or are paying for an extra service? Well this has been my experience at least but as I say I’m in Scotland.

If you’re on Hydroxy you should see an optician routinely and more often free under NHS - particularly if your eyes feel uncomfortable. You should ask your optician to refer you to hospital eye clinic if you feel your eyes are getting worse but having Sjögren’s doesn’t give us the right to be under ophthalmology I have learnt - because it’s a systemic disease not an autoimmune eye disease like uveitis for example.

[Chris21]

You could ask your GP if they are prepared to send you for a second opinion as you don’t agree with rheumatologist? It’s the rheumatologist that gave me my drops and mouth spray/gel which is now on regular prescription and when I see him for review he checks meds and changes if required, he always insists I have eyes checked yearly because of meds (in England we pay for this, unless you have glaucoma, diabetes or over 60) if the optician finds anything they refer to the hospital. Have you discussed your meds with your GP? I know it’s a lot of trial and error before finding one that works for you.

[Hidden in reply to Chris21]

Oh ok thanks for explaining that you pay for optometrist checks in England.

[JStro52]

My rheumatologist was very happy to send me the ophthalmologist and that’s where I’ve had the bulk of my treatment. I had ‘permanent’ punctual plugs for a while and have recently had a lower occlusion (cauterisation). They don’t prescribe drops for me and I just use OTC ones. Hyabak work best for me.

[Hidden]

Im in Australia and get referred twice yearly to an opthamologist however this is out of pocket expense. I have sjogrens and lupus and on plaquenil too. My rheumatologist reduced my dosage to one tablet per day rather than two and put me on imuran instead. I did prefer the higher dosage of plaquenil at first but my body seems to have adjusted and my eyes have settled for now. I also take antihistamines daily which seem to help the watery dry eyes. Hope this helps xx

[Amakura]

I also suffer from Sicca as well. Have you tried contact the sjogren's organisation for assistance? They are very good. I was advised to see the dentist immediately for my dry mouth symptoms, who prescribed high fluoride toothpaste plus mouthwash that contained no alcohol and as I also suffer from orbital myositis, which was one of my first symptoms prior to being diagnosed with Lupus, I'm also under the care of an ophthalmologist. Yes, they are stretched but their input is imperative with regard to sjogren's.

With regards to the eyes, you can ask your GP to refer you to an ophthalmologist instead or even present yourself, depending on where you live and if the eye condition becomes unbearable, at an eye A&E.

My ophthalmologist informed me that my eyes, due to being on hydroxychloroquine, will have to be scanned once every year.

I hope the information helps but I would definitely contact the sjogren's society. They were my saving grace.

[Shejustice]

Oh my goodness, I have sjornes, limited Scleraderma as well. I have lots issues with my dry eyes and have my ophthalmologist and dentist as part of my regular doctors!

Have to use Restasis, and steroid eye drops as well as frequent saline drops....I would insist the Opthalmologist is very important to your care.

[Amakura]

Hi there

My response is probably going to be received late as its been 8 months since you posted but you can be referred by your GP.

The British Sjögren's Syndrome Association are brilliant, so I would strongly advise you to contact them as well for further guidance.

It will be a year that I've been diagnosed with secondary sjogren's but from the little I know, opthalmologists are imperative for your eye health especially when you have sjogren's. I wasn't referred via the GP but via my third autoimmune disease (orbital myostitis) which required emergency treatment at a eye hospital and I've been a loyal customer ever since.

Nevertheless, I hope by the time you e read this, you have secured your appointment 😊