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Can Restasis make your eyes worse?

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  • Can Restasis make your eyes worse?

    My main problem when I went to the eye doctor was because of vision problems with the computer monitor. She immediately started me on Restasis and also ordered me some special computer glasses. The glasses work great,... but ever since I've been on the Restasis my eyes have been more scratchy, burn a lot, and just about totally unbearable. For 3 months now I've been using all sorts of drops and Hydro eye supplement, and they still continue to get worse. In fact when I was there a week ago I was told that now I also have meibomianitis and was started on antibiotics.

    Anyhow, the day after my appointment last week I accidently forgot to do my Restasis drops, and for the first time in 3 months my eyes didn't hurt or have any discomfort at all. In fact my eyes felt so good that day, that I quit Restasis altogether as a test, and instead of using drops 20 times a day like before, now I only need them 4 or 5 times a day.

    Has anybody else had this problem with Restasis? I'm very excited about the drastic change in discomfort with my eyes, but also a little confused. I'm not sure if I was having an allergic type of reaction, or if there are just some of us that react opposite to what it's supposed to do. Any feedback would be helpful.

  • #2
    My eyes felt much worse on Restasis. It was determined that I was hypersensitive to it. My doc would not go so far to call it an allergy, but I can tell you that allergy drops negated the bad side effects of the Restasis.
    Every day with DES is like a box of chocolates...You never know what you're going to get.


    • #3
      I just quit Restasis about 2 weeks ago. From what I can tell, it wasn't doing anything to increase my tear quantity, and generally made my eyes and vision worse. The first time I tried it, my eyes burned intensely. The second time, after 8 months of use, I developed blepharitis, which I had NEVER had before in my life. I stopped and tried it again during the last 6 months (once a day), and have concluded that it's minimally effective for me.

      Hey, some might even go as far as to say that the positive effect of Restasis is due to the Placebo effect.



      • #4

        I have the same reaction. My eyes are much worse on Restasis. Swollen eyelids, itching, foreign body sensation, light sensitivity to the point that I can barely be outside. It's worse than the dry eye disease. I tried it 5 times, with weeks of pretreatment with steroids, eye drops before, eye drops after, etc. I will not use this drug again.



        • #5
          I believe Restasis is what caused my more severe dry eye...and it has never gone back to normal. I went to the optho's last year to try and find contacts that would work better, I never had dry eye other than when wearing contacts. Long story short, three weeks after being on restasis and my life isn't the same any more.


          • #6
            Similar experience

            Restasis also seemed to irritate my eyes, so I ended up using a ton of other drops, and my eyes just got worse and worse - to the point a couple of weeks ago when I wasn't sure what to do. So I quit using the Restasis and started doing other things (no caffeine, more water, lid scrubs, BioTears). My eyes are better right now than they have been in awhile... My doctor wants me to try Restasis again, but I don't think I can...


            • #7
              I quit Restasis after 4 months of use because the effects were ranging from neutral to negative.


              • #8
                Is it the castor oil????

                I did a google search and found some interesting tidbits about castor oil [used in Restasis]. It is considered a fairly safe substance, however, in rare cases can cause an allergic reaction [dermatitis, several forms of allergic conjuntivitis and even asthma].

                Here are some other references:
                Castor oil is used in conventional medicine as a laxative (when swallowed) and used as an eye drop to treat some eye irritations. It is also an ingredient in some hair conditioners and skin products. Available scientific evidence does not support any other claims.

                Oncologists now use castor oil as a vehicle for delivering some chemotherapy drugs to cancerous tumors. A special formula of castor oil called Cremophor EL is used as a carrier for paclitaxel, a drug used to treat metastatic breast cancer and other tumors. Unfortunately, the vehicle sometimes causes problems of its own, including allergic reactions. This has prompted a search for substitute carriers.
                Castor oil is considered safe in proper doses for conventional uses as a laxative. However, side effects can include abdominal pain or cramping, colic, nausea, vomiting, and diarrhea. Long-term use of castor oil can lead to fluid and electrolyte loss. Women who are pregnant or breast-feeding should not use castor oil, nor should people with intestinal blockage, acute inflammatory intestinal disease, appendicitis, or abdominal pain. Medicines that are dissolved in or based on castor oil compounds can cause allergic reaction.
                Immunoglobulin E-mediated allergy to castor bean dust was common among castor oil factory workers, presenting as an increased incidence of asthma. 9

                Case reports of allergic reactions to the castor oil component in topical preparations exist, including reactions to vaginal lubricating gels. 21

                A review of anaphylactic reactions to IV phytonadione suggested that the vehicle polyoxylated castor oil was responsible. No previous exposure or sensitization was documented for the reaction. 16


                • #9
                  Very interesting - nice finds Scout (as always!).

                  Anybody know how the castor oil concentration compares between Restasis and Refresh Endura (or whether it's the same)? If similar, then I would think trying frequent applications of Refresh Endura for a few days might help demonstrate whether the castor oil is what's causing an adverse reaction.
                  Rebecca Petris
                  The Dry Eye Zone


                  • #10
                    As far as I'm aware, Refresh Endura is basically Restasis without the cyclosporine. Allergan found that this vehicle worked very well as an eyedrop in it's own right and decided to sell it seperately. That is my understanding anyway.


                    • #11
                      My restasis experience

                      Hi I have recently posted X 2 but for some reason they are not going through. So I hope this reply

                      I have been using Restasis for about 2 months now. My and surgeon had insisted that I not try it at all because of all the cases he had seen of people having reactions as you all have described. So I can't blame the guy for that and I didn't of course use any. However, when he wanted to cauterize my tear ducts I felt like I should at least try all options first before doing something permanent. (My last posting was wanting everyone's opinion on the cauterization aspect). What did I have to lose right? So he prescribed them for me and my eyes are better. Now of course time could have improved them too.. hard to say. All I can say is that it feels great in my eyes. I am usually sensitive to things so I thank God that this wasn't one of them. I guess the only way to know if it's the restasis improving things is to quit it and see.. Not at that place yet!. So I guess if anyone reads this thread and is discouraged and has nothing left to lose but try Restasis I say go for it".


                      • #12
                        Originally posted by gspne
                        I accidentally forgot to do my Restasis drops, and ...

                        I did the same thing...forgot my Restasis and my eyes improved. I'm very skeptical about Restasis and borderline think it's a scam. Your doc shouldn't have thrown you on Restasis like that without any other remedies. I think Restasis should be the last desperate attempt to help your dry eyes. But I would advise everyone to stay away from that poison .

                        Also, if you are putting in a lot of drops in each day, I would advise you find some without preservatives such as TheraTears in the vial. You don't have to use the whole vial at once. The cap can be replaced so you can use more later, but be careful to keep the tip clean and use the entire vial the same day you open it. I found that after prolonged use, non-preservative free eye drops would irritate my eyes.

                        Hope this helps.



                        • #13

                          I am sorry that all of you are having trouble with Restasis, but when I forget to use it, my eyes quickly remind me by feeling so dry that they hurt. I am fortunate that, for me, Restasis works. I seldom have to use any other drops and since I started Restasis, my quality of life has improved greatly. I work on a computer all day, so by the end of the day my eyes used to be so tired, I seldom read or watched television. I felt that I had to save my vision for work. Since I began using Restasis, I have started to read again and I am enjoying that immensely. I am also watching some television, but would rather read a good book, which had been denied to me for so long.


                          • #14
                            same as Eli

                            I have also been told, by an ophthalmologist, that Endura was brought to market because of the accidental finding, for the placebo group during the Restasis trials, that the castor oil vehicle, by itself, helped some patients.

                            Rebecca's idea is excellent: Ruling out that cyclosporine may be the problem by taking Endura for a while, and comparing results to Restasis.

                            By the same token, it would be kind of Allergan if it could offer cyclosporine on different vehicles. Canola and corn oil have a long history of use as ophthalmic vehicles, and could possibly be the ticket, for some. . .

                            And cyclosporine drops, in concentrations often higher than that found in Restasis, are regularly compounded at pharmacies. . .I share others' sense that Restasis rides on hype, and really does not represent anything NEAR a widely applicable breakthrough. . .

                            For those giving up on Restasis, I hope thought will be given to FreshKote. . . I'm a Restasis veteran (3.5 years--it helped with burning, but nothing else) now hooked on FreshKote, which, for my particular problem, is quite remarkable. . .The longer I'm on it, the better. . .so far. . .I will have TBUT numbers by late next week, to report, after about 3 months off Restasis and on FreshKote. . .On Restasis, my TBUT never went above 1 second. . .Maybe my ocular surface has improved sufficiently on FreshKote that I may be able to hold tears on it better. . .More soon. . .


                            • #15

                              Thanks for your repeated updates on FreshKote. I always check your posts, because I want to see how you are doing with those drops, and I really appreciate your sharing your results with us. Can you also share how frequently you dispense them?

                              Glad to hear that things are going well, and thanks, again.


                              (Sorry that I am shifting the topic here!)