Need advice for dry eyes !!

Posted , 4 users are following.

Hi Everyone,

I have had sjogrens/ sicca syndrome and cutaneous lupus for 10 years . I take plaquenil . My main issues are dry eyes and joint and muscle pain. I use systane when my eyes really start bothering me. I,ve tried Xiidra but it caused extreme burning, blurry vision and my eyes got really red. So i stopped it and went back to systane. On friday i woke up with a floater in my left eye and my eye was hurting me . This is the first time this has happened to me. So i got scared and i went and saw the ophtalmologist just to make sure that everything was ok . They said the floater was because of my age and that sometimes it can cause a detachment of the retina but for now i was good. I explained to him that sometimes i get this terrible pain in my eye like when it gets really dry. He recommended restasis . Has anyone had success with this medication and what side effects have you experienced with it ? Or has anyone had success with lubricant drops ? I am really concerned that its going to make things worse for me because its a immunosuppressive drug. Any thoughts would be greatly appreciated. Have a Blessed week .

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  • Posted

    Hi Sunflower I have been using Ciclosporin eye drops [Restasis] for several years now & my eyes are much less dry.

    I use a lot of different eye drops and learned a long time ago, that I should always use preservative free drops. The preservatives cause a lot of problems.

    Regarding your floater, again, I was once told that if I ever spot a floater, I will see it constantly because I am drawn to it! We all have floaters & so long as your ophthalmologist examines your eyes regularly, you should be alright.

    Are you in the UK?

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    • Posted


      Thank you so much for the reassuring words. I was really scared especially since this was the first time this has happened to me and I thought that maybe the plaquenil might be playing a part in this. But thankfully it isnt . I was using the regular Systane so i will check into the free preservative ones. When you first started using the Restasis did you get any side effects like burning etc ? Since I am on plaquenil i get my eyes checked at least once a year or sometimes twice.

      I live in the US .

      Hope you have a Blessed week.

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    • Posted

      Hi Sunflower, some of my drops do burn & I think Restasis is one that burns occasionally. I'm afraid that I have got to the stage where I instill my drops on autopilot!

      I know that if any drops burns and the burning doesn't stop, I use my ocular lubricant to ease things. I use Hyabak which are preservative free and very good.

      I think that the drops burn more if your eyes are very dry, so perhaps using a lubricant frequently, will help

      Thank you for your good wishes

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  • Posted

    Hello Sunflower13,

    I use Muro 128 by Bausch and Lomb. I use it in the mornings, and it causes a slight burning at first. But it does help eye edema. I also use Soothe by B&L. Because I play at our church, I need these eye soothers. There seems to be a lot of vision blurring, which is a nuisance. What I find most annoying is the dry tongue, which also swells. Hydration is really important. Visit your dentist regularly and brush and floss your teeth. So far my teeth are fine. After 75 years, that is something to be thankful for. Systane is also a good eye lubricant. My tongue felt so nasty this morning that I used a zinc lozenge. It helps.

    Today is Thanksgiving in Canada. May you all be blessed.

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    • Posted

      Hi Sally,

      Happy Thankgiving to you and Canada. I love Canada . I have been to Calgary and Banff and hopefully one day I can return. Thank you so much for the info. Most of my problems have been my eyes. So far my teeth are good . I have always used systane but this time am not sure why it is not giving me the relief that I need. I will check into the ones you suggested. Hope you have a Blessed week .

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  • Posted

    Thank you for your kind thoughts, Sunflower 13. I find that I am like MrsMop, automatically putting in eye drops. I had a bottle of Refresh in my purse)of course I had forgotten about it). It helps, but is not so long-lasting as Soothe. Went to my daughter-in-law's family for Thanksgiving. Ate 3times what I usually do. But it was all so delicious. Lately my sense of taste has become terrible. Sweet, sour and salty are the ones that work. The tongue is usually swollen, so I bite it. Does anyone else have this problem? I am thankful I can still sing.

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