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  • Kineret drops with serum tear drops

    Hi, I am new to the site but wanted to begin a thread regarding the sort of available Kineret drops. I received them from Dr. Dana at the Mass Eye and Ear hospital in Boston. They are expensive and not available except through him. The clinical trial is going to be published this spring. I had a bone marrow transplant in May 2010. After months of suffering and severe pain from dry eye due to gvhd (graft vs host disease) I feel I am finally getting a bit of relief - it is a very slow road. I am also on stem cell drops, genTeal gel drops (over the counter) and Refresh singles (over the counter). My Schermer test revealed a 0 in the left eye and a 1 in the right eye. My body simply stopped making tears but since I have started to combine the serum tears (growth factor) with the Kineret (for severe inflammation) I started to feel better within two weeks - not perfect but slightly better. At least I now have some hope. If anyone has any questions or would like to follow my progress feel free to reach me here.

  • #2
    Originally posted by MBC View Post
    Hi, I am new to the site but wanted to begin a thread regarding the sort of available Kineret drops. I received them from Dr. Dana at the Mass Eye and Ear hospital in Boston. They are expensive and not available except through him. The clinical trial is going to be published this spring. I had a bone marrow transplant in May 2010. After months of suffering and severe pain from dry eye due to gvhd (graft vs host disease) I feel I am finally getting a bit of relief - it is a very slow road. I am also on stem cell drops, genTeal gel drops (over the counter) and Refresh singles (over the counter). My Schermer test revealed a 0 in the left eye and a 1 in the right eye. My body simply stopped making tears but since I have started to combine the serum tears (growth factor) with the Kineret (for severe inflammation) I started to feel better within two weeks - not perfect but slightly better. At least I now have some hope. If anyone has any questions or would like to follow my progress feel free to reach me here.
    hi, thanks for posting about this kineret drop. it gives me some hope, because i have alot of inflammation and i can not try any stroied or restaises due to my history of viral infection in the past and i am suffering alot. can u tell me what is this kineret drop made of? how much was it? if u can give me more info that would be nice. Is this coming to market any time soon? thanks alot, this could be the answer to my prayers. i wish u full recovery with this new drop and please keep me posted.

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    • #3
      Kineret drops

      Hi bp77, The drops are actually made from an FDA approved drug called anakinra (sp) that is in use for Rheumatoid arthritis. I believe you can take it sub q or in a pill, but not sure of that. The drug is not approved as an eye drop. It cost about $140 for a 28 day supply. It is not a steroid (as far as I know). You can contact Dr. Dana's research staff regarding making an appt and seeing if you qualify for the drops. Insurance does not pay for them but for me it was a no question - I would have made any type of sacrifice at all just to try them. They are definitely working along with my serum drops. Much less inflammation than from just one week ago. Don't know when it will be on the market and FDA approved. I am not that familiar with that process but maybe the Mass Eye and Ear can answer that. If you are in NY it is really easy to take the Amtrak from Penn right into north station in Boston. The MEEI is not that far by taxi. Best of luck and let me know what happens. You may have to beg for an appt but don't give up. He only sees patients on Tues morn. and all day Wed.

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      • #4
        I'm glad to hear that this is working.

        I am aware of an ophthalmologist at Shilley Eye in La Jolla, Ca. who had a Graft vs Host patient. This patient had no detectable Schirmers or TBUT. Vision was 20/300, quadra plugged, failed Restasis at 6 months, lateral tarsorraphy. The doctor stopped Resatsis and put the patient on Oasis TEARS Plus. At one week vision had improved to 20/200 and pain was mildly better, at two weeks vision had improved to 20/80 and discomfort was decreasing. At one month vision was 20/30 and patient was comfortable.

        Perhaps for those that are not able to join the study this could be an alternative.

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        • #5
          Originally posted by MBC View Post
          Hi bp77, The drops are actually made from an FDA approved drug called anakinra (sp) that is in use for Rheumatoid arthritis. I believe you can take it sub q or in a pill, but not sure of that. The drug is not approved as an eye drop. It cost about $140 for a 28 day supply. It is not a steroid (as far as I know). You can contact Dr. Dana's research staff regarding making an appt and seeing if you qualify for the drops. Insurance does not pay for them but for me it was a no question - I would have made any type of sacrifice at all just to try them. They are definitely working along with my serum drops. Much less inflammation than from just one week ago. Don't know when it will be on the market and FDA approved. I am not that familiar with that process but maybe the Mass Eye and Ear can answer that. If you are in NY it is really easy to take the Amtrak from Penn right into north station in Boston. The MEEI is not that far by taxi. Best of luck and let me know what happens. You may have to beg for an appt but don't give up. He only sees patients on Tues morn. and all day Wed.
          thank for ur reply and all the info. I hope u get all better keep us posted.

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          • #6
            update on Kinera drops

            Hi

            I have been on Kineret drops for two week now and my inflammation is almost healed. My lids and eyes are no longer bright red and much of the pain is gone. I would say I am still uncomfortable especially when I go outside (it's very cold here) but I am much better than when I only used the serum drops and Refresh. I'm so glad I got them. They are expensive but well worth the effort. They are not exactly soothing and I feel like I need to use the serum drops within ten minutes. My eyes no longer feel gritty most of the time. I would love to hear from anyone who has tried the Kineret drops or has been through the clinical trial

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            • #7
              update on Kinera drops

              Hi fellow sufferers

              I have now been on the new not-yet-on-the-market Kineret drops for inflammation for the past two weeks (3 times per day). I feel they are working better than expected. I still wake up with puffy eye lids but the redness is gone and most importantly, I am feeling less pain and discomfort. Not perfect yet, but much improved. I have noticed some side effects. First, it causes blurry vision for about 20 minutes. Second, after ten minutes I noticed that I really need to apply either serum drops or Refresh. Also, it does cause some excema around the eyes, but I handle this with warm water. Basically I am glad I was able to get them. I believe that the clinical trial showed a success rate of about 30% (not sure, though) I would love to hear from anyone who has gone through the trial or has received them after the trial ended.

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              • #8
                Kineret- Helping with dry eyes

                Originally posted by MBC View Post
                Hi

                I have been on Kineret drops for two week now and my inflammation is almost healed. My lids and eyes are no longer bright red and much of the pain is gone. I would say I am still uncomfortable especially when I go outside (it's very cold here) but I am much better than when I only used the serum drops and Refresh. I'm so glad I got them. They are expensive but well worth the effort. They are not exactly soothing and I feel like I need to use the serum drops within ten minutes. My eyes no longer feel gritty most of the time. I would love to hear from anyone who has tried the Kineret drops or has been through the clinical trial
                Hi,

                I began taking Kineret two days ago. My eyes are not quite as dry, but they are very red right now. Between the cost of Kineret, blood serum, and OTC solutions, I hope Kineret will prove to be an effective solution for severe dry eyes.

                I hope you continue to see positive results from this solution.

                bxq

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                • #9
                  I used them but stopped because I didn't want to go past the 3 month mark. I am scared of putting all this stuff in my eyes. For example, doctors didn't tell me that wearing my contacts could cause my eyes to get so dry I can't go to the movies at 30 or work. Nor did my dermatologist tell me the side effects of accutaine years ago. I am scared of medicine and doctors but need them. Did you ask the doctor in Boston if you could use the drops nonstop forever and if he has patients that do and what the side effects are. I guess i am wondering if after 2 years of use your eyes can get even dryer? The drops are pretty much the only drop that help with eye pain so far. They really do help me a lot compared to what is out there. Also, I heard they would be approved in 2 or 3 years. I don't understand that when I can't find the study in the FDA clinical trials list. I have about 0 schirmer and pretty much no staining. I have also been told my symptoms are worse then what the doctors see. I have been tested for all autoimmune and negative, luckily.

                  The prose lens from BFS help me for an hour and then my eyes get inflammed and red. If I can use the drops long term I am thinking of trying the drops in the morning and at night when I take the lens out. For some reason when I take the lens out my eyes really hurt. So, maybe the kineret drops can help with this too since the drops made my eyes white. I am just scared of long term use.

                  FOR ANYONE IN SERIOUS PAIN THAT HAS TRIED EVERYTHING A TRIP TO BOSTON MAY BE WORTH IT FOR YOU.

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