Sjögren’s Disease/Syndrome

[Blackwitch]

Has anyone on here got Sjögren’s Disease or Syndrome and had cataract surgery?

Recently, my eyesight has deteriorated. I’ve been treated for Rheumatoid Arthritis for years with all the usual NSAIDS, DMARDS and after my old Rheumatologist left, my new consultant started me on biologics which had all sorts of side effects so they were stopped. I asked her whether I might have had Sjögren’s all along as although I have tender, aching joints I’ve never had any joint erosion. She says I definitely have osteoarthritis, some sort of inflammatory arthritis but says she’s not an eye expert.

I requested a referral to an ophthalmologist but the waiting list was so long I went to get an opinion privately. I was born with a squint and had two operations to straighten my eye when I was 3 and 5 but have no detailed vision in my lazy eye. For years I was able to just wear one contact lens. I then had a corneal ulcer in my good right eye so had to wear glasses. In 2014 I had a retinal tear, again in my good right eye, which was repaired with emergency laser surgery and since then I have had loads of floaters in my good right eye so haven’t been able to drive. I have had a couple of cases of uveitis since. Two years ago, I was told by a new optometrist that I had cataracts in both eyes and the lenses in my glasses were changed to darker varifocals (£500!) but they were useless and since then I have only been able to wear sunglasses.

I really wanted to see the NHS Ophthalmologist so when my eyes flare up, I have access to the Eye Clinic without having to spend a day in A&E. I eventually had my appointment a couple of weeks ago and he just said I needed cataract surgery in my right (good) eye and the waiting list was around 4 months. If it goes OK, my distance vision will be perfect but I will need reading glasses. If it goes wrong, I’ll effectively be blind. The consultant I saw didn’t even mention Sjögren’s. I’m sorry this post is so long but I’m just really worrying that this is too soon to chance it. Has anyone had this done? I’d love any comments.

I had been told before that nobody would risk doing a cataract operation on someone with one eye until you were nearly blind.

[Fruitandnutcase]

Don’t know about Sjorgens but we have an elderly friend - she was 90 last year.

She has an artificial eye I can’t remember why though. Her vision with her good eye is now very, very poor and we know a very good surgeon who was willing to do it and he said the chances of failure were minimal but that he couldn’t exclude the risks and it was entirely up to her to make the decision.

That must have been at least 7 or 8 years ago. In the end she decided not to have the operation as poor vision was better than no vision but since then her vision has deteriorated massively, now she really can’t see and is only really partially sighted. She has got very frail and can get around but that’s about it. She says she is too old now to do anything with the cataract and doesn’t want to have it done.

It’s a difficult decision really. Difficult to tell if you definitely have Sjorgens without further tests. Perhaps it doesn’t make any difference to a cataract operation.

[Blackwitch in reply to Fruitandnutcase]

Yes, I can understand her reasoning but I definitely won’t wait more than a few years if it gets worse. To rub salt in the wounds I’ve just had my driving licence renewal form through the post as I’ll be 70 in May. I haven’t driven since I had my right knee replacement in 2014 (coincidentally when I had my torn retina). It all seems so final not to have that driving licence in my purse and if I decided to have my cataract done, I would legally be able to drive if it were to be a success. I think I’m going to write a letter or email the Ophthalmology Department at the hospital and ask the Consultant more questions.

[Lizard28]

Hi, I guess they have to tell you all the risks before any surgery. I have Sjögrens and see an ophthalmologist every year to get my eyes checked, I have the punctual plugs in. I also have cataracts but they are not bad enough to get done yet, he told me not to worry as I’m on the system and he will do them when the time is right. They always leave the decision up to you, I almost left after hearing the risks before a procedure I was about to have. But it’s normal for them to discuss it. Its like the leaflets on the medication you get. I always doubt taking them after I’ve read them. When I was told I had GCA and not keen on taking steriods, the doctor said well if you don’t take them you could end up blind, it’s your choice. Yes I did take them reluctantly. It’s food for though. Best wishes

[Blackwitch in reply to Lizard28]

I had punctal plugs a while ago but could not tolerate them. It was a week before they were removed. I was told it may have been over sensitivity caused by fibromyalgia. I honestly was close to scratching my eyes out. I can’t win. ☹️

[Lizard28 in reply to Blackwitch]

That is very strange, I didnt even feel mine in. When she put the first one in, she took it out and said she would use a smaller one which she did, they come in all different sizes, I didn’t know that. I wonder if yours were put in correctly. They have made such a difference to me.

Very strange the two different people telling you different things. Could you maybe get a second opinion as you have complex problems with your eyes.

[Blackwitch in reply to Lizard28]

It was a really rushed appointment as I think they slotted me in due to a flare. I didn’t see the Consultant Ophthalmologist and I wasn’t really prepared for them saying I needed cataract surgery so soon after the private consultant saying it would be 3-5 years before anyone would consider risking it! I didn’t realise the cataracts had worsened so quickly because I’ve always thought the floaters (loads of them) were the problem.

[Lizard28 in reply to Blackwitch]

When I was getting my eyes checked at the Optician, he showed me the chart that I would need to have failed before they would consider getting cataracts done. I was happy with that. Could you maybe go and get your eyes checked somewhere else. I know you can only get one every year on NHS, but might be worth paying to see what someone else says.

[Blackwitch in reply to Lizard28]

I only saw my optician/optometrist in November and he said the prescription in my glasses hadn’t changed. Until recently I’d been having 6 monthly appointments to check on a small patch of glaucoma (yes, that’s in my right eye too!) I told him I will never wear glasses again, only sunglasses, because they don’t make any difference. I can actually draw a picture of all the floaters in my right eye (which I was told in 2014, my brain would gradually ignore). Unfortunately, my brain has refused to follow instructions. I can type on my phone using one finger but cannot read books or papers as the white page starts to change to yellow, black and purple concentric circles and letters just ‘fall’ off the page. It’s how I imagine dyslexia to be but I’ve never had that and I’m nearly 70. White or pale coloured walls and floors also change colour. At least with my phone I can change colours, print sizes etc. We’ve had to paint some walls dark colours as well due to the glare and just replaced our conservatory roof with a flat solid (slightly sloped) roof because it was too bright. I think I’m doomed! 😂

[Fruitandnutcase in reply to Blackwitch]

I know you are younger than I am but I am definitely thinking that getting old is no fun, when you are young you never in a million years think things like that might happen to you,

Think it would be a good idea to try and have a good chat to an ophthalmologist and see what they say - there’s a big difference between the age and activity level of the person we know compared to you.

[Blackwitch in reply to Fruitandnutcase]

No, it certainly is no fun getting older. When I was younger I used to be very sporty, did gymnastics, swimming, netball, hockey etc. Later I went to a gym regularly either at lunchtimes or after work. I used a rowing machine, did weight training and more swimming then …. bang! My hands were the first to feel the pain and I was told to stop typing so had to change jobs. That seems an age ago. I eventually started with back problems and following my first back surgery had to leave work and take ill health retirement. Since then it’s been all downhill health wise. At least I have a caring husband and we’ve been married for 53 years. I can’t be that much younger than you but I agree you have to keep your own medical records and diaries. After checking mine online there were so many mistakes, I was horrified.

[Fruitandnutcase in reply to Blackwitch]

We’ve been married for 52 years and it does help to have a supportive husband / partner/ family.

You were very energetic / althletc when you were young. You must really miss it. Fortunately I was less so, husband once asked if I had ever done any sort of sport and I said that I had gone horse riding for years - he pointed out the horse did all the work. I probably get more exercise now than I did when I was young although I enjoyed canoeing and cycling.

Medical records!!!! I was shocked to discover someone had said I had been a smoker - I hate to think what else is on there. As someone on one of these forums said a couple of weeks ago ‘Blimey, if the police want to use some of our medical records to identify someone they haven’t a hope’

[Blackwitch in reply to Lizard28]

Sorry Lizard28 but why did you take steroids? Were they tablets or eye drops?

[Lizard28]

They thought I had GCA and that’s the only treatment that’s offered for it. Xx