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Half dose Gilenya?

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    Half dose Gilenya?

    Is anyone taking gilenya every other day? I was taken off of G last year due to super low white counts. My neuro is now thinking we should go back on it but take 1 every other day after the first week.

    Thoughts?

    #2
    I did that and then went to every third day- white count came up so I could stay on it.

    Comment


      #3
      Originally posted by Temagami View Post
      I did that and then went to every third day- white count came up so I could stay on it.
      Thank you. I like to hear from those who have actually tried out the theories and suggestions of my neuro. 😁

      Comment


        #4
        Yes 1/2 Dose Gilenya

        Originally posted by KevsLuv View Post
        Is anyone taking gilenya every other day? I was taken off of G last year due to super low white counts. My neuro is now thinking we should go back on it but take 1 every other day after the first week.

        Thoughts?
        Yes my liver tests were a little high and my thyroid readings went through the roof. The Neuro asked me to go to one tablet every 2 days. Did that for about 2 months and everything seemed fine. I was also on biotin. The thyroid did not settle, they were due to remove the thyroid tomorrow but today noted that the biotin was interfering with the thyroid test results (after I showed and article) and the operation cancelled (12 hrs to go pretty damn close). They will start to again review next week after no biotin, Gilenya, thyroid medication.
        So
        1. yes one tablet every 2 days seemed ok
        2. watch biotin and thyroid function tests (they may not mix).

        I will transfer to Tecfidera after 6 weeks when everything has settled back down I guess.
        Regards

        Comment


          #5
          Yesterday I did my 1st dose appointment...today i feel awful, much like I did the day after the last time.

          I am to take it everyday for the 1st week and then every other day. How did you remember to take it every other day? Normally I set a weekly alarm but I can't set one every other day...

          Comment


            #6
            I have been on a half dose for a year

            How are you going ? Are you taking the half dose ?
            I have been on a half dose for about a year now. I actually take a tablet on Mondays, Wednesdays, Fridays and Sundays so I suppose I am on about a 60% dose. I take it like this so it is easier to remember.
            I went to the reduced dose as my lymphocyte count was too low. It has come back to an acceptable level now since reducing the dose.
            I have just had an MRI which has identified a new lesion although it is not producing any symptoms for me. But this may mean that my neurologist will review my medication when I next meet with her in November.
            But I have tolerated the Gilenya well and haven't had any side effects except some Psoriasis when I was on the full dose.
            Hope you are doing well !
            Angela

            Comment


              #7
              Gilenya every other day

              i was switched to gilenya every other day a few years ago. it dropped my active lymphocyte count to <200 two labs in a row one one pill/day

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