Announcement

Collapse
No announcement yet.

First PML with Gilenya...

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    First PML with Gilenya...

    The pml occured in a person who had used tysabri before gilenya. the cause of pml is thought to be more from prior tysabri use than curent gilenya use...

    but it did take 2-3 years for the first pml case to occur in tysdabri..i suppose that is about the same time gileya is at.

    i posted a link to an article reporting this in the tysabri forum...

    but to me it would say for anyone who switched from tysabri to gilenya because they were jcv+, they might want to continue top be alert for PML symptoms and perhaps get more frequent mri's than is normal on gilenya.

    link to article in boston globe reprting pml in tysabri forum same date.
    xxxxxxxxxxx

    #2
    I have been off TY for a b/c I am JCV+ and am now thinking about going on Gileyna.

    How long was the person off Ty b/f starting "G"?

    Meissie

    Comment


      #3
      Wait time btw Ty & G

      I just had my 59th infusion of Ty. I am JC+ and have know this for the last year and half. I am part of the Stratify study. MY neuro really wants me to come off Ty since the new information came out that if you are JC+ and have more than 24 Ty infusions your risk for PML increase from 1:1000 to 4:1000 (or 1:250). My options are Copax or Gilenya. I was wandering what the wait time between drugs has been for others? I have been fighting going on Copax becasue I had skin reaction to Rebif which I put up with for 2 1/2 years. But what I read about Gilenya I'm not sold on it either. Don't know what to do!
      Sunshine
      RRMS 3/05 - Rebif 4/05 - Tysabri 10/07 - Copaxson 6/12 - Tecfidera 5/13

      Comment


        #4
        from what I understand based on what my dr. told me, it did have more to do with tysabri than simply being on the gilenya..apparently the patient was not off ty for the necessary period of time that it takes for it to flush from a person's system before starting gilenya, he also said that it seemed as though the patient had a few other complications that caused for pml to happen... that being said, my heart goes out to this individual and anyone else that has been diagnosed with pml. I have to wonder though, what dr. would ok someone going on gilenya when they know that the patient was jc positive and had not been off of tysabri for long enough?

        Comment


          #5
          I believe the patient was off Tysabri for approximately 6 weeks after being on Tysabri for about 3.5 years. I believe the suggested washout period is 90 days. I have seen some doctors suggesting up to a 1-year washout, but that is why they call it "practicing medicine."

          What is the basis for the prescribed washout period?
          What scientific evidence supports that prescribed washout period?

          Comment


            #6
            The recommended washout period for tysabri, i believe is based upon the time tysasbri remains active. After stopping tysabri a persons MS(about 60% people stopping) will get more active MS than it was before they started Tysabri. This is called a "Tysabri Rebound Reaction"..this usually occurs about 3 months after stopping Ty.(90 days)

            Because of the Rebound effect most doc's will try to get someone on another MS treatment as soon as possible, to deal with the possible(60% possible) more Active MS coming soon..

            If a person is JCV antibody +, use of Tysabri can cause PML. I have read that PML can be asymptomatic for up to 6 months before the person knows something wrong.

            The person could have had PML starting before they started Gilenya.

            With a 6 week wash out period, all we know is that Gilenya didn't stop PML.

            Because both drugs are new, we don't know if gilenya facilitated the development of PML or if Gilenya has its own risk of PML for someone that has used Tysabri first.

            Use of an immunsuppresant before Tysabri has been shown to increase the risk of PML very dramatically..
            Could be that use of Tysabri before using Gilenya might also increase the risk? or the opposite. Might be a lower risk if the two are not used by the same person...

            new meds are like that, more questions than answers.

            if a greater wash out period was used, i'm uncertain it would have changed the outcome? but it might have provided clearer answers.
            xxxxxxxxxxx

            Comment


              #7
              Probably in the future the best way to switch will be to start copaxone 6 months before stopping Tysabri--so copaxone has time to reach full effectiveness---stop Tysabri use copaxone alone during the 3 month washout period to deal with the rebound effect while Ty gets out of a persons system... then start Gilenya and stop copaxone???

              something like that idk?
              xxxxxxxxxxx

              Comment


                #8
                I like the idea of starting Copaxone 6 months before discontinuing Tysabri. It makes sense, although there are no published studies looking at the two together (for obvious reasons, as they are produced by 2 competing pharma companies!)

                That being said it would be very expensive and I don't know of any insurance companies that would approve both at the same time.

                Good thought though!

                Comment


                  #9
                  re to the response of me getting the pml/jc virus... the answer to the question raised, i was weaned off tysabri for nearly 6 weeks before i started gilenya... then my nuero called me in asap etc etc... thus hospitilized for a day short of 5 weeks.... that is off course if you are talking about me? (jimbobjox) cheers, james

                  Comment


                    #10
                    Originally posted by Marco View Post
                    I believe the patient was off Tysabri for approximately 6 weeks after being on Tysabri for about 3.5 years. I believe the suggested washout period is 90 days. I have seen some doctors suggesting up to a 1-year washout, but that is why they call it "practicing medicine."

                    What is the basis for the prescribed washout period?
                    What scientific evidence supports that prescribed washout period?
                    spot on mate!!

                    Comment


                      #11
                      Sunshine, I would try and buy a little time and see what BG-12 is going to look like. I just wish we could get more info and it was a little closer to approval.. with a full prescribing information package. I for one will read every side effect and ask about all the little ones this time..

                      Comment


                        #12
                        re latest result pml....

                        Hi folks, as I said I'd update you with results re my pml-jc virus thing, well after the 3rd mri scan in 2 months, a bit better news is that the virus has tamed down a bit... i still have to see my neurologist to get his next advice etc but my legs especially calves and thighs feel like lead weights!! ... I will update in due course. Cheers, James

                        Comment


                          #13
                          One more....

                          James,
                          I just wanted you to know that one more (me) person is thinking about you.

                          I have been on Gilenya since Dec 2010.

                          Best of wishes to you friend.

                          CrazyCatLady
                          MS Does Not Define Me.....My Love of Tea Does! LOL!

                          Comment

                          Working...
                          X