UCTD and Chronic Dry Irritated Eyes: Hoping this is... - LUPUS UK

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UCTD and Chronic Dry Irritated Eyes

bunch1974 profile image

Hoping this is the right forum for information. I was diagnosed with Undifferentiated Chronic Tissue Disease. I have symptoms of more than one autoimmune disease but not enough of one or the other to name it just that. Many of my symptoms point to Lupus so my doctor started me on Hydroxychloriquine two months ago. It was suspected that I also had PMR so I am also taking 7.5 mg of Prednisone. It seems to be working, however in the last 3 weeks or so I’ve been having awful dry and blurry eyes. Sometimes I have to squeeze them shut a few times or blink for them to focus better. I have been using lubricating eye drops but they only last so long before I have to repeat them.

Of course now with Covid 19 I can’t get to the optometrist. Has anyone else had issues with this ?

Thank you in advance for any information you may have ❤️

16 Replies

Hi bunch! Warm compress 10-15 minutes daily. Refresh lubricating drops preservative free in single vials 3-4x a day. I also had plugs placed in my eye drainage holes and this helped tremendously. Dry eyes definitely improved with hydroxychloroquine in about 3-4 months.

Hope this helps and you feel better soon!❤️

bunch1974 profile image
bunch1974 in reply to Jmiller623

Thank you for the tip of warm compresses. It sounds very relieving, will give it a try ☺️💕

Yes I use a warm flannel, it doesn’t cure but relieves sometimes 👍🙏

bunch1974 profile image
bunch1974 in reply to stiff19

Going to try warm compresses tonight ☺️💕

stiff19 profile image
stiff19 in reply to bunch1974

Great let us know if it helps 👍🙏

Hey Bunch - I had this symptom pre diagnosis with lupus and rheumy has said he thinks I probably have sjogrens too which affects eyes. It started 4/5 yrs ago when my eyes were getting sorer and sorer and v dry in the day, despite my usual run of the mill dry eye drops I'd always used - and then my eyeballs were literally getting stuck to my eyelids at night - awful! So I went into Superdrug and found some expensive non preservative eye drops for those with v dry eyes and post eye ops. They worked well for a while and I was so pleased but then one night it was the worst and they didn't work well at all. I was so scared as couldn't open my eyes without having to rip them open. I called the optician the next day and was sent off to Eye A&E who did tests and said Sjogrens due to my diagnosis with UCTD like you, plus other stuff have going on - I had damage to my eyes by then they said- so don't leave it. They prescribed Hylo Forte drops for the day and Carbomer for the night time - much better! So - I'd get yourself some Hylo Forte for day and maybe that'll work for now. Definitely talk to your GP though. who should be able to prescribe the Hylo Forte or similar if it's cheaper than buying yourself. And Carbomer Viscotears for night if it gets really bad. Damp warm flannel on your eyes will help until you get some, and stay hydrated ie tons of water all day... and also, keep the room moist ie put some little bowls of water around to humidify, especially if you have the heating on still - and open the windows lots..! Hope that all helps. Good luck, stay safe/well. D

bunch1974 profile image
bunch1974 in reply to DJK99

Thank you so much for your quick reply ! I think you and I are definitely in the same boat and although I’m sad to hear you’re suffering with all of it , I’m relieved to hear there are answers. I’m going to call my rheumatologist tomorrow and see if he will prescribe the eye drops. I have researched Sjögren’s also and have suspicions that it may be the case. You didn’t say but are you taking hydroxychloriquine or any other meds for the Lupus and/ or UCTD?

DJK99 profile image
DJK99 in reply to bunch1974

I'm on methotrexate for SLE Lupus and nifidipine for (previously yay!) severe raynaud's, folic acid, D3 and all sort of other stuff. They started me on hydroxy' 4years ago for Undifferentiated Connective Tissue Disease pre diagnosis for Lupus, but I was violently intolerant (drastic runs and insane migraines with aura -couldn't work). I was referred to the top rheumy and he started me on steroids then onto methotrexate. It's been great at sorting out my hand lesions/joint inflammation plus the rest of my bod - but not sure it's working as well now.. been on it for 2.5yrs... I've just been in a seemingly year long off and on flare... and then much more intense one from Jan - March as hands were bad again, mouth and nose ulcers from hell, ongoing headache, nasty rashes on face and arms, hearing loss in one ear/awful tinnitus/vertigo, awful cough/throat/chest infection, bad stomach and gut, back/hips worse than ever and the rest of my bod, a new goitre (whatever next?!)... and my ongoing neutropenia..so yes, I'm bit better right now (hands anyway and chest thing went) but would like to actually meet rheumy to discuss...but not sure if that'll happen until a vaccine is in place as can't go out... had phone consult a month ago and usually he's really good but he was on the brink of going onto the front line for the virus - he was quite different...and it was all about trying to minimise any stress and worry ie don't go out but you're fine :)! Oh dear I should be asleep... Did I say I have trouble sleeping? Heheh.. can't get comfortable and then gut and back wake me up plus temperamental temperature ;). Night night!

bunch1974 profile image
bunch1974 in reply to DJK99

Yikes!! 😣

My fibromyalgia/ chronic fatigue, PMR and now UCTD journey isn’t as bad as I thought !

You poor girl....sending gigantic hugs 🤗

DJK99 profile image
DJK99 in reply to bunch1974

Aww thanks Bunch. Well had other stuff too but I’m a bit better than couple of months ago - and definitely this time last year which was 👎. I’m retired on ill health now - and live alone without pets (had to pass on my rather poo-ridden pusscat, bless him, due to my neutropenia, to two lovely peeps with two cats he gets on with as he’s a v social, mega loving sweetheart!) - so I can sleep as late as I need (no more cat scratching and banging at my bedroom door(!!) which is essential for me or I’m dragging myself around more than usual and everything gets much worse. It’s better when weather is good too I find.. not to hot, not too cold... a little of the Goldilocks gene in me 😉. This thing can be quite up and down eh, with a baseline of not great! It’s ok - I’m used to it and very very lucky I don’t have kidney issues and worse etc like so many on here. I did at first, but the metho sorted that it seems which is amazing. I’m grateful I can not work and look after myself... ie take it easy. There’s a massive price to pay financially and emotionally etc, but that’s the only way I can deal with it all. Hope you’re Ok today and meant to ask - are you thirsty all the time with dry mouth? X

The drops for dry eyes are not a cure - like the pred for PMR they are a management tool. And that means you have to keep using them as required. Dry eye is a common component in very many autoimmune disorders - including PMR - and for a few people pred seems to make it worse. But you need the pred if it is PMR - so keep using the dry eye stuff.

bunch1974 profile image
bunch1974 in reply to PMRpro

Thank you for this information. I’ve been under some stress the last few weeks and am flaring because of it, so I’m thinking my eyes are worse because of the flare ?

PMRpro profile image
PMRpro in reply to bunch1974

Very probably! No-one can really say they aren't stressed in some way at the moment!!

Hi Bunch, it does sound like you could have Sjogren's. I used to have to pull my eyelids open with my fingers in the morning. I've had punctal plugs to block the tear ducts to stop them draining and then ciclosporin eye drops when they didn't work. Your tear film layer has a watery layer then a more oily layer on top to stop the moisture evaporating too quickly. The oil ducts easily become blocked when there's a lack of moisture, so putting a warm compress on your eyes, then massaging the eyelids helps to soften and free up any blockage. It won't cure the underlying problem but might help a bit. Keep up with any lubricants you have very regularly as your eyes can easily become damaged. Remember to keep out of the wind and that the pollen at this time of year doesn't help either. The good news is, like JMiller said, you might find it improves with hydroxychloroquine. My problems started a few months after I stopped taking it!

bunch1974 profile image
bunch1974 in reply to Tykle

Thank you for your reply and information. I will continue with the “over the counter” eye drops until I speak to my rheumatologist tomorrow and then hopefully he can prescribe something more helpful.

You'll probably need to see an eye consultant but your rheumy or GP can refer you.

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