Hi again...SS has now progressed to my eyes. Have tried 3 different drops and will go to the doctor if these last ones don't work. Do your eyes come right or are they generally always red? I find night time the worst and wake up with horrible dryness several times a night and add drops but yhe red if offputting. Thank you
Red eyes..do they go away?: Hi again... - The Australian Sj...
Red eyes..do they go away?
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Im finding same probelm, i was using liquid tears for a long time but they are now causing redness and stinging. Friend suggested optive drops so may try those. Are you taking plaquenil? I did find probelm was mot so severe after few months taking it?
I'm still trying not to take Plaquenil or hydroxychloroquine until I really have to. Will get onto the mannetec products when I get back from the holidays. Spice also recommended poly tears...have you tried those? Haven't been able to find them where we are (Spain) which is a nuisance.
I've been advised to use tears without preservatives and there's a gel you can use for additional relief over night I believe. My optician was great for advice. I've bought stuff from Amazon. I was told to keep air con off by rheumatologist. There are also eye masks you can use to get relief. Good luck ... I'm
New to this too
Ouch. My eyes felt like that a lot at the beginning and feel like that when I get lax with my heat pack, massage, wash, honey and drops process. Finding the right drops can be hard. Hang in there. Are you using preservative free ones? I would guess that will be important as your eyes sound so sensitive. Do you have a good ophthalmologist or dry eye specialised optometrist?
I got lucky. I was only given refresh and one other brand of drops before I was given Bion Tears which were perfect for me and I recommend them to people all the time and have never heard a bad word about them. They are the only drops I have tried that don't sting at least a little when I put them in. My dry eye specialist optometrist in Brisbane has mentioned Bion Tears are really popular with her Sjogren's patients. They are over the counter so I would give them a go if you haven't already. .
Everyone's issues are different so I guess everyone's treatment success can be different as well. My oil production is much higher than my water component but my oil glands get clogged to as well as lubricating my eyes with drops I need to try and keep the flow of the nature oil as best I can. What is working for me is 5-10minutes of a heat pack (not too hot, 40C is said to be good but I know I go a bit hotter than that) on my eyes in the morning, preferably also at night. I follow this with "massage", stroking along the lids with gentle pressure. Then flushing my eyes with Bion tears. Washing lids and lashes with SteriLid (I have never given this step enough credit but it does seem to really help the redness caused by micro debris). Then I use a teeny drop of Opti-Mel (Manuka honey) eye gel in each eye, stings like heck! But helps for hours and I haven't had conjunctivitis since using it and I used to get it quite a bit. My dry eye specialised optometrist recommends I get duct plugs again but I had them in the past and one eye's fell out I was able to compair and I felt that there was no difference in comfort and redness and I got a lot of infections in the eye with the plug. But a lot of people find they are invaluable so they might be another option. I am just stubborn about avoiding the plugs or the permanency of cauterising which has also been suggested, and avoiding meds. I was diagnosed near ten years ago and for better or worse still meds free.
Best of luck. I hope you find what works for you.
Wow thank you for all that info...I am away for another 6 weeks but did try to get to an opthamologist..but wasn't successful as we are travelling each day to a new place. The hot pack has helped them feel a lot better...but still like meatballs so I am using clear eyes which may not be good but gets rid of the red..at least for a while. Will check if the new drops are preservative free...it's in Spanish so will have to Google. Thanks again.
Wow. That sounds like an exciting holiday. So glad the heat is working a little for you. Maybe familiarise your self with the Spanish words for preservative free, suitable for contacts for drops, and my optometrist was suggesting for me to use some moisturising facial cleansing wipes with no fragrances which may be easier to find over a specialised eyelid cleanser.
I would say keep up with the heat packs and some heat too up with the side of your mug with any cuppas during the day. Rubbing your finger down your lids just outside the lashes after the heat, from the middle near the nose to the outer a couple of times. Washing well both morning and night even with just a warm wet face washer if you don't get a cleanser and finding preservative free dry eye drops is a must. Travel can be so hard with dry eyes. I use twice as much or more eye drops when I go far from home whether to a more tropical or cooler, dryer climate.
I hope you can find something that gives you some comfort preferably not at too much cost that isn't just the clear eyes as the look on an old ophthalmologist of mine when they were mentioned especially regarding dry eyes has scared me off them for life. I hear it can put the capillaries they are concealing under a lot of pressure and it can lead to them popping and ultimately lead to long term red eyes. And in a sjogrens I would be more concerned.
Also sleeping with a travel mask can decrease drying over night. There are specialised silicon ones for dry eyes but my optometrist thinks a travel mask is a good option too. I tend to just use my heat pack as a travel mask. And good wrap sunnies if you can get them could help keep the humidity close to your eyes and debris away a little.
Good luck and I hope you have a wonderful holiday!
And I was thinking, if you have travel insurance it might be worth seeing if you can claim back on a visit to an English speaking GP to help you get drops or just for your eye drops as they are falling into an unexpected travel expense.
And fish oil tablets are prob worth taking to help your year production.
Fabulous ideas...we are in France today (doing a cruise) so have googled the names and about to go on a mission. Thank you so much for the info and to everyone...I can't tell you how helpful it is when you know nothing. Will try and find a mask and wrap around sunnies too. Was a bit worried about the clear eyes too..can imagine the opti nearly had heart failure...might have to hide for a while
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Nothing was helping my dry eyes not even eye drops. I began using cod liver oil 3 pills in am and pm. It took 4 months but now i dont use my drops but 3 times a day, before it was every hour. I got diagnosed sjogrens 4 yrs now. I also take flaxseed oil onec a day.
Good luck
Hi, I have had dry eyes now for over 20 years. Diagnosed with Sjogrens about 10 years ago. I have tried several treatments for severe dry eyes. I have probably tried most of the artificial tears available. I developed an intolerance to all of these. I can now only use Cellufresh and Viscotears Gel. Last year I had several corneal erosions. Referred to a corneal specialist who has been very helpful. I am now using Cyclosporine 0.05% ointment and Vitamin ointment morning and night. During the day Cellufresh every 2hrs and Viscotears Gel in the night if required and a humidity mask. I could not use the Tranquileyes mask as I was losing eyelashes and scratching my cornea. I now use Eye Seals mask at night. Purchased from the Dry Eye Shop in USA.
I could not tolerate the liquid drops of cyclosporine however for the last year using cyclosporine ointment I have noticed a significant improvement with my dry eyes. Now unfortunately not quite as good. If not much better next year will need to go on autoglaus tears made from your own blood. So the saga continues.
Just a couple of points you need to use single use eye drops with no preservatives. When you put the eye drops in your eye pull down the bottom lid and make a well. Close your eyes and place your index fingers on the tear duct in the corner of the eye. Apply very gentle pressure and count to 100 and open your eyes. This seems to prevent most of the eye drop from running out.
When I use the cyclosporine in the morning it takes about and hour before you can see clearly. I set the alarm for 5.00am. If my eyes are very dry in the morning I will first put in Cellufresh before I fully open my eyes fully. Then apply Vitamin A ointment wait 15 min and then add the Cellufresh.
Sorry if this all sounds a bit complicated but for me my eyes have been much happier after trying Cyclosporine ( needs to made by a compounding pharmacy in Australia). Cyclosporine is available commercially in the USA.
I had run out of options with my eyes and this is why I started Cyclosporine.
I have also gone Gluten free in my diet and have found this very good to reduce some of the inflammation.
Hope this helps.😊
One lady recommended coconut oil in an eye dropper just before going to sleep. She used an eye dropper warmed by running it under a hot tap. It's a great anti bacterial, anti fungal & anti viral and very soothing. Just make sure you get Virgin Coconut Oil and are not allergic to nuts.
Had a chat with pharmacist, she did suggest drops without preservatives, which are more expensive. So got melophthal to try, it is in one use vial, got enough fo 15 days. The first use has gone well with no stinging. Fingers crossed this will work out.
Some good stuff here - as usual with SS it is necessary to find one's pwn path but sure is helpful to hear about the possibilities. I was referred to an Opti-whatever consultant who prescribed Hylo-Forte preservative free eye drops which I use regularly through the day. I always apply after tipping my head back horizonal and 'blink them round' as it were. But at night these are not enough and she prescribed VitA-POS 5g eye ointment with vitamin A (again preservative free). This is a waxy ointment that blurs the vision but does last so that my eyes are not too dry in the morning! Having said that my first action is to put Hylo-Forte in when I wake up (typically 5am then I have painkillers too and get some more sleep... It is all a bit intensive and it doesn't do to forget...
I use Lacrilube at night (not to everyone's taste but I love it as its oily and my eyes love it) and Hyloforte drops through the day. I love these drops as my hands aren't very good (RA, OA, Sjogren's neuropathy, possible Scleroderma and hypothyroid) and I find these drops easy to administer and so soothing. I agree about sticking to preservative free - very important my optician said.
Just in case this applies to anyone reading this post or to you - are you taking Amitriptyline or other meds for depression of pain from same family? If so Sicca and blepharitis can be a side effect. Same with antihistamines.
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Hi there, I have been able to get an equivalent to hylo forte with sodium hyaluronate and VitA ointment for the eyes...was a mission but is so far making a big difference. Thank you!
Hi Toes! Yes I liked Lacrilube too I recall. I was on Amitrip but was not monitoring properly back then so I cold not be sure what effects it had...
I am going to keep note of all these ointments as i may need them in future. By the way is it yearly checks that are needed if you take plaquenil??
Some say 6 months, mine is yearly now. Tried so many drops. Restasis did very little. Plugs came out, I bathe and clean eyes but rub gently. Blepharitis as well. Rosacea (possibly the same thing) All the symptoms of S S but not the blood tests. Anti depressants made everything drier. Am not too sure it all didn't start with them.
How amazing are you all...thank you so much for all your ideas..I will come back on what works for me to help others. Bless you all.
Hi everyone...just to let you know that my meatball eyes have improved no end. Has been a challenge but the Sodium Hyaluronate ( equiv to Hylo Forte) has been perfect for me. I was using Vit A oitment goo at night but find the drops easier and just as good through the night. Hallelujah. Thanks everyone