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Sjorgrens and Ikervis eye drops

Posted , 10 users are following.

mandy95
mandy95

Has anyone had any experience using Ikervis eye drops (Ciclosporin).  They are to be used at night time only.  My eye Dr has just prescribed these for me to try as he was just at a Sjorgrens seminar and these are currently being recommended for Sjorgrens suffers.  Any advise appreciated.

regards,

mandy

1 like, 14 replies

14 Replies

  • AndreaB1967
    AndreaB1967 mandy95

    Posted

    I use Restasis twice a day  which is Cyclosporin.  Not sure this is the same as what you are taking).  I have never been diagnosed with Sjogrens  but I have pretty bad dry eyes.  I am not sure if it is helping  but I am afraid to stop it.
  • jefferson89822
    jefferson89822 mandy95

    Posted

    Have heard of Cyclosporin. It is FDA approved for use in dry eye treatment. I use 'Carmellose sodium 0.5%w/w' drops, 3 times/day in each eye....up to 5 times/day if outside in windy weather. I do have Primary Sjogrens Syndrome.
    • mandy95
      mandy95 jefferson89822

      Posted

      Hi Jefferson,

      i use the same eye drops that you do.  The white part of my eye has been really red for 3 weeks now and the eye appears to be swollen.  After 3 visits to the dr and 3 different antibiotic nothing changed, so I made an eye appt and the dr said my eye was not infected but he recommended inker is which is suppose to be an immune suppressive drug.

      regards,

      mandy

    • jefferson89822
      jefferson89822 mandy95

      Posted

      heck, sorry to hear that. I had something similar a while back in the the meniscus of my left had scarred and an eyelash had got in there....i had to go to specialist eye time to find this out
  • jordan58854
    jordan58854 mandy95

    Posted

    Isn't Ciclosporin the medicine in Restasis?
    • jefferson89822
      jefferson89822 jordan58854

      Posted

      hi....yes it is. Because Cyclosporine is also an immunosuppressant, there can be side effects i believe ( I cannot recall taking this eye emulsion), although i guess if GP prescribes it...the benefits must outweigh these
  • jordan58854
    jordan58854 mandy95

    Posted

    I was told by my eye dr that a company is now making a contact lense like item that adds moisture to your eyes. 

    Dry eyes are very complicated. I do not know how one could be very old and deal with this very complex amount of issues like putting in this contact lense. I am worried for all of us. 

  • philippa_06790
    philippa_06790 mandy95

    Posted

    Hi Mandy, I have sjogrens and have had very painful cracked bleeding corneas within the last 8 years. My eye hospital used to prescribe me steroid drops and cyclosporine ointment which, along with a daily dose of prednisolone, kept me stable but uncomfortable. I've just been moved from cyclosporine ointment and steroid drops to a single drop of Ikervis per night and it's a revelation. It works brilliantly and my eyes are much calmer, ooze less (nice!) and I've lowered my risk of cataracts by dropping the steroid dose. Win win!

    • Bszt
      Bszt philippa_06790

      Posted

      Hello Philippa, Just read your response re Ikervis.  I have just been prescribed it and am a bit worried about the burning effects when you put them in.  I tried Restasis and the oil based ones which Moorfields Eye hospital make up but could not tolerate them.  As yet I have been too scared to try these but get desperately painful and inflamed eyes.  Have tried just about every eye drop and ointment going with limited success.  I do have Sjogren and unfortunately my eyes are just part of it as I have muscle and joint problems and myositis connected to Sjogren's.  Your feed back on the burning  would be most appreciated.  Thanks Bszt

       

    • philippa_06790
      philippa_06790 Bszt

      Posted

      Hi Bszt, I completely understand your concerns about the pain medication can cause in a cracked corned. I have used FML steroid drops in the last and find them incredibly painful. I also had a few days of horrible pain when I moved from cyclosporine drops to the ointment. I haven't had any trouble with Ikervis though, even though I have a cold at the moment and my eyes are dryer than normal. I pushed them to the limit yesterday by working under fluerescent lighting for 12 hrs (school teacher having a day of parent interviews, ergh!) and they didn't react to the drops. Worth a try??

    • mandy95
      mandy95 Bszt

      Posted

      Hi Bszt,

      Please give them a try. My eyes were so bad I would have done anything to soothe them. The drops do sting for a couple of minutes every time you use them but once that is gone what a difference. Just had my eye appt last week and Dr said my eyes look so much better now. I have been on them for about 8 months and they still sting when I put them in but well worth those couple of minutes of stinging.

      Let us know how you get on with them.

      Regards,

      Mandy

  • Cowgirl918
    Cowgirl918 mandy95

    Posted

    I have Sjogrens and suffered from cornea lacerations. I am on Restatasis 2

    or 3 times per day in addition to artificial tears, lubricating eye gel at night and great big sunglasses cool.

    It has helped a great deal. I am also very careful with face and eye hygiene to avoid soap in eyes etc. Not sure this answers your questions but hope so. I feel much better and the lacerations have healed.

  • matt30073
    matt30073 mandy95

    Posted

    Hi Mandy,

    I’ve just been put on these by my Ophthalmologist for the first time after trying every sort of drop & cream including steroid drops. I have PSC & AIH liver diseases along with Crohn’s disease and I’m now going to be seen to see if I have Sjogrens disease too! Due to everything I have being immune related finally I’ve been put on these drops and I hope and prey they work for me (second night tonight of using them) they do sting a lot when first administered but I can live with that. I would love to know how long did they take to work for you? Also do you use a gel for applying at night at all, if so any recommendations would be much appreciated. I have to use preservative free just to be even more of a nuisance. I’ve also been advised to try OmegaEye x4 daily rather than just normal omega 3 pills - any thoughts on that?

    Sorry to bombard with questions!!

    Thanks,

    Matt. 

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