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    Tysabri to Gilenya?

    Hey everyone.

    I know lots of people are thinking about the issue of Tysabri vs. Gilenya. I wanted to have a discussion about Gilenya specifically from current Ty patients. I've had 22 infusions of Tysabri, and have a neuro appointment after #24 in January.

    What are the rest of you guys hearing about moving from Tysabri to Gilenya? The way I'm thinking about it is that for us, we'll have an easier time transitioning, given that our infusions cost more than the pills (which I'm assuming is quite intentional on the part of Novartis), so insurance will be more likely to cough up for it.

    So, what are you thinking? Death from HSV/VZV? Skin cancer? Heart stuff?

    Or PML?

    grumblegrumblegrumble. How annoying to have to decide between not treating aggressive disease and taking drugs that are documentedly dangerous. Never mind what taking one after the other will do.

    So, fellow petri dishes, tell me what you're thinking!

    #2
    Unscrambled, I refuse to change at this point. I have good insurance coverage and I have had no new lesions in the 2 years that I have been on Ty. I just wish I had my energy back like I did the first year of Ty. I am thinking about trying Magnesium and see if that helps with several issues.
    "...the joy of the Lord is your (my) strength." Nehemiah 8:10

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      #3
      This whole thing bothers me, too. I am on Medicare and so far Gilenya is not on my formulary list for Medicare Part D. Tysabri was paid for lastyear under Medicare Part B so it wasnt considered a drug on the form. list. I was told my doctor will have to contact my drug supplier and request they cover it and hope they will. He wants me off Ty as i already have had 31 infusions. Now i have been off Ty for 32 days and actually feel better, not as stiff. I am willing to give Gilenya a try as long as i will be able to afford it, but the drug i am really interested in is Laquenimod.

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        #4
        I go for my 18th infusion on Friday. This is my thinking at the moment.

        "If it ain't broke, don't fit it." Tysabri works for me, I have no side effects from it, am very watchful for PML symptoms and I have a $6000 deductable starting in January, no matter what drugs I am on, it makes no difference - except I will hit the deducatable maybe sooner than later.

        I watched the video on YouTube that the lady who is being treated for PML posted. So I know the treatment is not fun. But I just haven't reached the point where I think risk outweighs benifit. I still remember what life was like before Tysabri.

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          #5
          Tysabri to Gilyenia

          I too and looking hard at the switch. I have had @ 14 infusions with the Tysabri and my JC virus antibody was positive making me twice as likely to develop the PML. How ever I hear there is a 3-6 month washout period where I would have to be off of all meds. Has anyone out there made the switch? My appointment with a second neurologist to discuss this is in @ 2 weeks.

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            #6
            I tend to agree with cocogirl

            My son goes for #39 on 11/15 and has had no new leisons since he started. He had a very agressive form of MS and had 3 flares in a month and half - I never want to go back to that again.
            Dedra
            Son with MS

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              #7
              thanks for everyone's thoughts--

              this is such a hard decision. I don't know what the results of my JCV test is, so I suppose that'll have to be a part of my decision. Hopefully, folks that make the switch will post to this thread (or not see this thread and start another one ), and we can all help each other puzzle it out.

              To the poster above: yeah, you have to be off all meds for a couple of months before you start new ones. In my research, I have heard that the effects of Ty persist for a few months, so there should be a hangover of suppression while people wash out.

              Hopefully.

              So, in conclusion, ::shrug::

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                #8
                I just got home from going to a MS thing they had. It was for southern CA sponsered by the South Coast Pacific MSS. They talked a lot about Gilenya. Wow. Whoa. No thank you. Tysabri seems tame after listening to what they said about Gilenya. BUT....they did talk about how good of a drug for MS it is. They said all the new drugs coming out were like that - very very good, but with very very bad side effects.

                What's a person to do?

                I just had #18 on Tysabri. And I am just staying on it. All the data from the JCV studies aren't out. My doctor isn't even testing until it is. I wouldn't take it even is it was. What are you going to do with the informaiton. Even a negative doesn't mean you will stay that way. A kid at the mall could sneeze on you tomorrow and pass it along. (if a sneeze will pass it along, you know what I mean)

                And Gilenya is a whooping $40,000 a year. (so they said today) Pretty soon only weathly people will be able to be treated.

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                  #9
                  Just saw a short video from the ECTRIM conference in Sweden about the rebound effect from stopping Ty and they seemed to think going on Copaxone after your last Ty infusion would stop the rebound. I plan on starting Gilenya in March after being off Ty for 6 mos. so dont know how this Copaxone thing would fit in.

                  Just talked with my doctor and with my insurance re. paying for Ginenya and I have gotten preapproved. Cost will be $90 for 3 months, but once I reach the donut hole (I am on Medicare) the cost will be $2832 for 3 months til I reach that $4800+ mark, and then it drops back to 5% which is around $141 for 3 months supply

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                    #10
                    Shalimar - glad you got aproved. Even though Copaxone is a daily shot, it isn't so bad. I was on it for 5 years. And it will only be short term.

                    They talked about the rebound effect at the MS talk. Which sort of made me mad. In all my research before I went on Tysabri, that was the only question I had for my doctor a year and a half ago: what about the rebound effect? She said she never heard of such a thing, that that wasn't a problem. So I went for it. Turns out that was a good thing, but now they are saying it IS a problem for some. If the Copaxone keeps it away for you that will be great.

                    Let us kow how it goes for you. I don't really understand all the talk about the "donut" hole, and hope you are able to meet those high costs while you have to pay that. Good luck.

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                      #11
                      Thanks everyone for posting information about Tysabri.

                      -Emily

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                        #12
                        Originally posted by shalimar View Post
                        ... they seemed to think going on Copaxone after your last Ty infusion would stop the rebound. I plan on starting Gilenya in March after being off Ty for 6 mos. so dont know how this Copaxone thing would fit in.
                        Thanks for posting this! The info about Copaxone is really interesting, and makes a bit of sense when you think about how the drug functions. Something to talk with the neuro about when I see him (heck, maybe it was him talking, he was certainly there ).

                        I'm glad you got approved, and hopefully your infusion center/some other institution will help you out when you reach the donut hole.

                        As for the cost of this drug--the drug itself is more expensive than Ty, but when you add infusion costs, it's less--my guess is that those of us that want to switch will be able to because the insurance companies won't have to pay for nurses to stick us and infusion rooms and all of that. We'll see.

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                          #13
                          Shalimar - Plan D provider for Gilenya?

                          How did you find a Medicare Plan D provider where you are only paying $90 for 3 months? I'm so confused and I only have until December 31st to find a new provider.

                          Originally posted by shalimar View Post
                          Just saw a short video from the ECTRIM conference in Sweden about the rebound effect from stopping Ty and they seemed to think going on Copaxone after your last Ty infusion would stop the rebound. I plan on starting Gilenya in March after being off Ty for 6 mos. so dont know how this Copaxone thing would fit in.

                          Just talked with my doctor and with my insurance re. paying for Ginenya and I have gotten preapproved. Cost will be $90 for 3 months, but once I reach the donut hole (I am on Medicare) the cost will be $2832 for 3 months til I reach that $4800+ mark, and then it drops back to 5% which is around $141 for 3 months supply

                          Comment


                            #14
                            cost of Gilenya

                            Hi Gucci - u asked about the cost I am paying - the $90 for 90 days. I have a plan through my former employer and it is a Medicare Advantage plan so we get quite a break

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                              #15
                              People- please contact the drug co for co pay assistance, I keep hearing people complain about the costs, from what I understand you are covered for copay assistance with an income of 5 times poverty level which is well 60,000 per year. All drug companies offer this and will help you, I pay 10.00 per month for my ty and 40 for Ampyra with a household income of over 50,000. Please call and check the most they can say is NO. Novaris has a a copay porogram as they want this drug out there to as many people as possible.
                              Plan for the future, but not too hard; it’s not your decision anyway

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