Hi. Looking for experiences of cataract with Sjogrens syndrome. I have a rapidly progressing cataract in my right eye, 3 prescription changes in my specs in 12 months. It's getting a bit costly! I'm 49 years old with lupus and Sjogrens. I'm not taking any oral steroids but I have used ocular steroids a couple of times for about a month each. Could this have contributed?
I've not yet been referred for removal surgery though my optician asked my GP to expedite my next eye clinic appointment due to concerns about the speed of progression and not wanting to strengthen my lens prescription again.
The eye clinic said they are reluctant to 'push me down the surgery path ' due to the complex nature of my conditions (I also apparently have 'floppy eyelid syndrome' despite NOT being either overweight or a man!)
So, before I go into battle, does anyone have personal experience of the suitability of this surgery with my diagnoses? My eyes have been severely dry for 10 years or more (pre-diagnosis), until starting treatment with ciclosporin eye drops last summer (now very much improved). I'm aware that eye surgery is typically avoided with dry eye conditions as it tends to worsen symptoms. Does this mean the consultant will be reluctant to remove my cataract? I'm very worried about my loss of vision and want to be well prepared for a conversation.
Thank you.
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Justinealexx
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Hello justine: am sorry you’re havingto to figure this out... i’d definitely be posting the same question here if i were facing up to this! Am already alert to ths prospect cause catarracts run in my immediate family...and i’m 65 now, So I’m going to be following the replies to your post closely
As you know i’ve been doing v well on my Cornea team’s daily ciclosporin ikervis drops for several years now due to severe early onset sjogrens cornea inflammation (severe filamentary keratopathy which evolved out of ongoing keratoconjunctivitis sicca inc meibomian gland dysfunction & other typical sjogrens dry eye manifestations...like you: diagnosed & treatment begun YEARS after actual onset...GRRRRR ). So i’m just wondering: are these are the same diagnoses you’ve been given?
Hi Coco. Thank goodness for eventual diagnosis and treatment huh?! Ciclosporin rocks!
I spent years visiting the eye clinic to be asked repeatedly 'Why are your eyes so dry?'!! I felt like saying 'You're the doctor, you tell me!' I think the fact my oral symptoms are mild by comparison was a bit of a red herring. I was using antibiotic ointment frequently for (mis)diagnosed conjunctivitis. I get a swelling and ache in one saliva gland and some mouth/nose dryness, especially at night, when I drink gallons. But few problems with teeth/gums and little trouble eating.
I know I have some keratitis but beyond that I'm unsure of the clinical condition of my corneas. I am most certainly still on a steep learning curve when it comes to asking for and understanding the diagnostic detail which is why your posts (and others') are so very helpful, thank you. I believe things for me are improved since suitable treatment began.
My sight is so important to me (and everyone, I'm sure). I am a keen target longbow archer (ranked 4th Nationally last year) and right-eye dominant but currently unable to compete - seeing three versions of the target is not helping my aim (though joint pain is also holding me back)! Not being able to participate fully in my hobby has far more than physical impacts.
I will keep you posted on the cataract situation - as long as I can see to do it!
WOW: you’re AMAZING: what i wonderful sport! OMG: can only be really spooky having your eyes so severely effected...and this op coming up.... I HUGELY agree: ciclosporin ROCKS! Am glad these helpful replies have come in. Am glad you’ll keep us posted as you learn more about your sjogrens, your eyes and everything else....maybe you’ll even post an archery photo some time XOXO
It just a matter of perspective. Eye-seen will go down eventually and there is nothing you can do about it. But you can slower it. With antiaging-health.com.au/can... , for instance.
Thank you for replying. I haven't come across these drops before. Interesting. Unfortunately, no good for me - I can't use drops containing preservatives. But, mostly because my need is a bit more urgent than having 6 months to achieve an imorovement. My cataract is rapidly progressing and I'm beginning to struggle to drive and to work. But I really appreciate this information and I hope it may be of help to someone else. I'm all for avoiding surgery if appropriate!
I have had symptoms of autoimmune disease for more years than i can remember but no doctor ever linked the symptoms. I've been under the 'care' of rheumatology for over 8 years and had a range of 'diagnoses' in this time ...... rheumatoid arthritis, not RA, osteoarthritis, possibly lupus, definitely not lupus, a wide variety of joint problems, asthma, not asthma, COPD, oesophagitis, hiatus hernia, pancreatic flare ups, gallstones, acid reflux, bile reflux (the last two severe and ongoing), dry eyes/nose/mouth (basically any mucus membrane doesn't produce much mucus!!!). Eventually rheumatology categorised me as having 'non-differentiated auto-immune disease'. My GP was convinced I had Sjogrens but rheumatology has consistently ignored these concerns.
The most debilitating of all my symptoms was the flare ups of inflammation (uveitis) in both eyes that was treated with steroid eyedrops. I was on repeat prescriptions of Maxidex for 7 years and in this time I rarely went more than 8 weeks without needing to use the steroid drops. Driving was challenging and the light sensitivity was awful. Fortunately had a very good optician who monitored my eyes every 6 months (I was also on hydroxychloroquine). I have always been short sighted (prescription -6.5 to -7.5) and then I developed cataracts and ended up with both eyes deteriorating rapidly, within 3 months had gone to -10 and -12 and the optician referred me directly to the hospital, to use his words the cataracts were 'galloping ahead'. Two years ago I had both cataracts removed (in between the two cataract ops I had my gallbladder taken out!!!) over a period of 6 weeks - not the most enjoyable summer. The post operative inflammation took a little while to settle down, possibly because they had prescribed steroid drops containing preservative which my immune system couldn't cope with - when they eventually gave me preservative free drops things healed up well, I also had a 'floppy eyelid' after the second op but that only lasted a week or two.
This week I have been to see an oral surgeon (at long last, woo hoo!!!) and am waiting for an appointment for a lip biopsy to test for Sjogrens, so hopefully I will have an answer soon.
Despite having a supportive GP and an excellent optician, rheumatology have never taken my symptoms seriously. The doctor at the eye clinic where I have an 'open passport' has said my eyes are 'extremely dry and not producing any tears' when he puts in drops. The oral surgeon last week said the glands in my mouth appeared to have no saliva. It's still not confirmed that I have Sjogrens but your post sort of mirrored some of my experiences with cataracts. Having them removed has been the best and most positive thing that has happened to me in years. My vision is better that it has ever been (still need glasses but nowhere near as strong). The operations were much easier than I had imagined they would be. The dryness in my eyes hasn't been made any worse by the surgery, I use Celluvisc eyedrops to keep them moisturised.
I don't know if anything in this very long reply (sorry) is of any use but I just wanted to let you know that there can be a positive outcome following cataract surgery for someone with extremely dry eyes and an autoimmune disease. Good luck and I hope things work out for you.
Thank you so much for your reply, Grannyjogger, very encouraging to know that my conditions need not necessarily deny me the corrective surgery.
Your long journey to diagnosis bears many similarities to my own, sadly. 'It's this......it's that.....it's neither.....We have no idea!' My short-sightedness is not as pronounced as yours, though I have worn glasses since I was 6 years old. After 40+ years, I am pretty bored with the constant 'face furniture' and the expense of it all but aside from a wonderful period of around 6 months a couple of years ago, simply haven't been able to tolerate contact lenses. The possibility of cataract surgery improving my right distance vision is very appealing, though I suspect I will remain a specs wearer in respect of my left-eye short-sightedness. Ho hum :/
The most frustrating thing about autoimmune conditions is that getting any sort of diagnosis is like nailing jelly to a wall. A few years ago I was so fed up with every appointment starting with “How are you feeling, how is the joint pain?” that I phoned the hospital and asked to speak with the rheumy nurse with a view to getting a copy of my health records. She said there was a new rheumatologist who was “young and enthusiastic” and made me an appointment which I went to full of hope and armed with an A4 list of my symptoms. She glanced at the list for all of 5 seconds and handed it back saying there was no reason to suggest a systematic condition. You couldn’t make it up!!!
I doubt a few weeks of topical steroids is likely to have contributed to the cataract formation - while steroids do speed up the formation of cataracts it doesn't always happen and it is long term oral use that is the problem.
I think it just happens for some people - you won't believe me but every time I get my eyes checked (not as often as it should be as i have to go to the hospital, opticians can't do eye pressures here) I'm disappointed there is no sign of cataracts despite having been on pred for years! If I had cataracts they'd remove them and I could get rid of one pair of specs, just need them for reading instead of having them on my nose all my waking hours!
That's not fair!!!! I used to have contacts, one for reading, one for distance and just had top-ups for driving, if I needed to read a lot I just took them out But dry eyes put paid to that...
When I had my cataracts removed I thought I would have perfect distance vision and just need glasses for reading but the consultant said this was not normally done and a slightly less strong lens can work better for all round vision. He also said there could be additional issues with over correcting for people who had previously been very myopic (as I was). I had minus two lenses inserted and I can read and potter about the house perfectly well. Just needing glasses for driving/distance vision.
I have Sjogrens and have had cataract surgery on both eyes with no problems, I am not sure if that helps in any way as we may not have the same problems.
Discovered I'm not due to be seen again until the end of March and I can't manage until then without changing my specs again! I now have an Eye clinic appointment 22nd Feb after by-passing the system and calling central bookings myself 😉
I'll keep you all posted. Thanks so much for all your replies.
Hi..I,too, have lupus and sjogrens, and rapidly forming cateracts. They have been asking questions about my left eye..apparently, it's a little different than my right. My eyesight has also changed fairly quickly...
Sorry to hear this. My cataract surgery was successful in both eyes in 2019. Though I have suffered some complications since. I do hope you are treated successfully. Let me know how you get on.
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