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    A Gilenya v Tysabri question

    Hi Everyone,

    We're new to the boards and unfortunately new to MS, our 20 year old son was diagnosed 6 weeks ago and we have obviously been on a steep learning curve!

    i was wondering if anyone would be able to offer some insights as we have reached a point of just going round in circles regarding his medication choice and not finding his MS specialist much help ( we have an appointment with a new one next week ) but his MS nurse just rang and after speaking to some of his colleagues he is strongly suggesting starting Gilenya now while we wait for the results of the JCV test.

    Our preferred treatment is Tysabri as long as he is JC - or at the least a pretty low titre reading in the + range, we have chosen that as he has a pretty large legion load in his brain ( 30 odd minimum ) with a few active on the MRI and 3 on his spinal cord with 1 of those being active.

    The MS neuro wasn't able or willing to comment on the lesion load other than to say it might indicate his MS is aggressive so we have sort of come to the conclusion along with the MS nurse that it's either possible aggressive or he has had it for a number of years but been symptom free. Either of those would be a reason to go with the more aggressive treatment from the beginning.

    So back to why I'm finally posting, if he takes Gilenya now and comes back with a low + titre value then I'm right in assuming that his risk of PML is higher than if he hadn't taken the Gilenya? but if he comes back - JC then taking Gilenya will have no affect on the chance of getting PML?

    The MS Neuro says it up to us if we want to wait to start the infusions until the JC results are back or start now and see what we think when the results are back but his first choice for treatment is Gilenya.
    He says it's because it's easier to take and our son has only had one acute relapse. But he was also surprised his neuro obs were pretty much perfect. That says to me that from his MRI he would have expected some decrease so I would think we would treat aggressively now to try to keep him that way?


    Sorry for the essay but any any opinions or feedback would be seriously appreciated

    #2
    Hi SharonK,

    Welcome to MSWorld, but so sorry to hear about your son. Personally, I'd vote on starting Tysabri ASAP. It's efficacy is greater than Gilenya, although each individual does respond differently to the Disease Modifying Therapies (aka DMT's) The risk for contracting PML is extremely low the first two years, even if JCV+. There are members here who continue years on the drug, despite being JCV+. (The higher the titer, though, the higher the risk.)

    A new DMT called Ocrevus was just approved by the FDA yesterday. It is expected to rival Tysabri, so might present another option in the future besides Gilenya for your son.

    Best of luck to your son!
    Kimba

    “When you change the way you look at things, the things you look at change.” ― Max Planck

    Comment


      #3
      Hi Kimba22

      Thanks for the welcome and advice, I think I had just freaked myself out as your suggestion is what I had planned but then I got way too scared of the PML risk...

      Comment


        #4
        Originally posted by SharonK View Post
        Hi Kimba22

        Thanks for the welcome and advice, I think I had just freaked myself out as your suggestion is what I had planned but then I got way too scared of the PML risk...
        Understandable. I would want Ty (currently on it) as well, but think it is really important to discuss Ocrevus with your son's neuro. This was approved for aggressive MS if it turns out to that he has primary progressive, as well as relapsing remitting MS. So I would want to understand the game plan should the Dr. feel he is progressing. I pray he doesn't. For many DMTs, you have to be off Tysabri 3 months before starting another DMT. Not sure if this is the case going from Tysabri to Ocrevus.

        I know all the information and decisions are so overwhelming at this point. Thank you for helping your son thru this. Keep asking questions.
        Kathy
        DX 01/06, currently on Tysabri

        Comment


          #5
          I agree with those recommending Tysabri as a first choice. I just had my bi-yearly blood test for the virus today, and the results should be back in a week. With your son so young, it is critical to hit the MS with the strongest bullet available. He still has excess brain cells available that can be used to repair damage, but the inflammation has to be arrested ASAP, and Tysabri can do this.

          With all new drugs, my neurologist recommends giving it a good year to make sure the drug hasn't been overhyped (see Tecfidera). It will probably take at least 6 months for the drug to reach saturation in the bloodstream, so don't expect results immediately.

          I have no side effects from Tysabri and although I am negative, I have just started the process of extending my infusions to once every 5 weeks (and then hopefully every 6). Many JC positive people use this to remain on Tysabri because they are doing so well on the drug.

          All the best to your son. MS is a terrible diagnosis, but now is a promising time, and with new drugs on the horizon, I firmly believe MS disability will, within 10 years, be almost invisible for many individuals. You'll still have the disease, but a normal life will be your future.

          Comment


            #6
            Hi Kathy,

            Thanks so much for your lovely reply

            We live in Australia so unfortunately Ocrevus isn't approved here yet, hopefully by the end of the year. I was really excited to hear that it was approved for you guys over there though!

            I have definitely calmed down a little since I originally posted and I think we will go ahead with Tysabri as it's also our sons first choice...he is a little in denial still but I think the info we helped him source has made it his decision too not just ours.

            The main issue I was having is that here in Australia it seems to take up to 2.5 months for the JCV results to come back rather than the under a week over there, ridiculous really but apparently they wait till they have a larger number to send over instead of individual bloods.

            When we see the new Neuro I'm going to find out if there is anyway to fast track it as I feel it's important to get those results, even if it's just to calm our fears a bit.
            Ive sort of figured though that he surely isn't going to contract PML in one or two transfusions so hopefully by this time next week he will have had infusion number 1!

            That will make it 7 weeks post diagnosis so hopefully all goes well.

            Huge thanks again Kathy and Kimba22

            Comment


              #7
              Hi ru4cats,

              Thanks for your reply, it looked like I had ignored you but both our posts must have been awaiting approval at the same time!

              So glad to hear of another doing well on Tysabri, no side effects is great.
              i hope he has the same as he feels pretty much normal now except for the fatigue so it will be such a shame if the Ty makes him ill.
              He does understand that he's doing it for long term stability so will hopefully cope with any ill effects.

              oh I so hope you're right about 10 yrs time! I had read that the newer DMDs are hopefully making it into more of a chronic disease rather than a disabling one that is about my only wish for now, other than a cure obviously.

              Thank you again

              Comment


                #8
                Hi Sharon,
                Where abouts in Aus?
                I'm in CQ.
                Just thought I'd let you know that the time frame for the JC test you've been given is a max. I've had them come back in under2 weeks or about 1 month. But it may depend where you live.
                I've been on Tysabri 5 years in June and i'm jc +.
                Ocrevus would also be my first choice for your son. i'm expectantly waiting for it to become available .This should happen inside a year. Ty is the next best at the moment.
                I do feel quite flu-y for about 24ish hrs with Ty but a lot of those I've spoken to experience nothing, one patient i know calls it her GoGo juice!

                If he is 7 weeks post diagnosis then, the flare/symptoms that lead to his diagnosis should be easing. I hope he does well ,
                keep us posted,
                Caroline.

                Comment


                  #9
                  Hi Caroline

                  It's great to hear from another Aussie!

                  We're Regional Vic, a couple of hours from Melbourne so I wouldn't have thought they would take that long, I'm also not impressed with the MS Neuro I picked so maybe when we see the new one this coming week we can get them re done and marked urgent.

                  Im definitely following all the info on Ocrevus too, if for no other reason than we have something to follow Tysabri with if/when he becomes JCV+

                  I hope you get on it ASAP and that it is a wonder drug for you!

                  Thanks for your good wishes for him, he has actually bounced back brilliantly this time. It was about 3.5 after the steroid infusion finished that he was pretty much 98% back, so I really really want to keep him that way for as long as we possibly can.

                  Comment


                    #10
                    SharonK,

                    I'm sending you a link to a web video/transcript of Dr. Vollmer from the Rocky Mountain MS Center in Colorado. He is the one who talks about the need for aggressive treatment of MS in the early stages. The RMMS center has a website filled with videos and webinars that have a wealth of information.

                    https://www.medpagetoday.com/mastery...ry-in-ms/63501

                    Comment


                      #11
                      Hi SharonK,

                      I am so thankful your son is recovering at this time!

                      If you don't mind, I will express my opinion about treatment options.

                      First, I would not choose Gilyena because it is not nearly as effective as Tysabri or Ocrevus. Also, the cases of PML reported in Europe with Gilyena is vastly greater than the number of cases reported in the USA. So that gives me pause, also. BTW, the cases of PML on Tecfidera reported in Europe are much greater than in the USA, also.

                      The biggest favor you can do for your son is educate yourself using this research site:

                      http://multiple-sclerosis-research.b...ternative.html

                      Second, I would seriously consider waiting for Ocrevus because if you begin Tysabri it can be difficult to get off. The reason is because MS often rebounds with a vengeance when coming off that drug. What Tysabri does is keep certain destructive cells from entering the CNS. Those cells are still circulating in the blood stream. When Tysabri is removed then those cells can rush in and cause major flare-up in MS.

                      The protocol for switching from Tysabri to Ocrevus is a guessing game right now. For most people it will go just fine, I believe. But for many, it will not be pleasant at all.

                      That is why I would give serious thought to waiting for Ocrevus. There is no other MS drug I would even consider other than Tysabri or Ocrevus because they poorly effective and/or have awful side effects or a combination of both, JMHO.

                      The only other option I might consider with a 20 year old son would be stem cell transplant but only at a legitimate, well respected, institution.

                      PS... I have spent years studying MS and treatments on behalf on my wife with MS. She was one of the first patients receiving Tysabri (early 2002 in trials) and continues doing extremely well on it today. She is JC virus positive and is considering Ocrevus.

                      Best wishes, Sharon. Your son is fortunate to have you. Please do consider Ocrevus. It is virtually as effective as Tysabri but without the PML risk. True, there is very little risk with Tysabri in the first two years of treatment. But it is a little like riding a tiger... you are safe as long as you stay on... but getting off safely is quite tricky. There are no other drugs I would even come close to considering as effective in treating MS. But that is JMHO, please understand that. Some people develop neutralizing antibodies to a particular drug and may have limited options and in those cases, or for other reasons, one of the approved drugs may be okay.

                      Comment


                        #12
                        I hereby acknowledge the expertise of Myoak in knowing what is in the best interest of your son. I was diagnosed in 2010, and IMHO, I have found the knowledge and wisdom in his posts above reproach. If Ocrevus will be available in the near future in Australia, go with Ocrevus.

                        Comment


                          #13
                          Huge thank you to Myoaks and ru4cats

                          Thanks for the links, we have watched some of those videos already and they just make so much sense and I've already read lots on Barts MS Blog but I appreciate that I'm looking in the right places.

                          I'm very scared of the rebound effect coming off Tysabri but all the professionals we have seen have said it won't be a problem but I've come to the conclusion that the last Neuro is pretty useless. Im waiting on a call back to see if there is any way to hurry up his JCV result, the receptionist just told me that all other results are back bar the most important

                          Im not sure we can wait for Ocrevus as from all reports it won't be here before the end of the year and with his lesion load I would honestly be too scared not to have him on something...but I'm definitely open to the expert opinions on here.

                          I'm actually getting a little worried as his mood seems to be dropping and he's a bit irritated which was something that had happened before his first acute attack 6 weeks ago....but mabye it's not related. I just wish we had a trusted Neuro as I'm totally out of my depth and just want to advise him to do the most affective long term thing 😭

                          Comment


                            #14
                            SharonK,

                            I just joined a FaceBook group entitled Ocrevus ( Ocrelizumab ), and if you're on FB, you might want to ask to join. It seems to have a goodly amount of good information, and there are a fair number who talk about moving from Tysabri to Ocrevus; most of their neurologists don't seem concerned. Maybe Ty for a year or 18 months and then consider a switch?

                            I'm so sorry your son is having to deal with this disease at such a young age, but your desire to get him on a DMD ASAP is the right decision. Please let us know how it goes. I was diagnosed at 58 1/2 and had no symptoms until 18 months before diagnosis. It's the young ones I feel so sorry for, but I've come to believe with aggressive treatment, for many, they will be able to lead a normal life. You're a strong advocate for your son, and that is key. Don't take "No" for an answer and just keep pushing until you get what is best for your son.

                            Comment


                              #15
                              Well absolutely devastated again, his JVC came back positive today at 3.28

                              So looks like we will start Gilenya and search for a Neuro that will go for Lemtrada, or if his white cells stay at a reasonable level then stay on Gilenya until Ocrevus is approved here...any other suggestions would be very welcome though.

                              I will try to search for that Facebook group now ru4cats, thank you.

                              Also thank you so much for your kind words, I know that even at 58 it must have been hard but I've spent most days since his diagnosis wishing it was me. He is just such a great kid, kind and courageous ( always has been not just since diagnosed) with the best smile and killer dimples that it's just killing me knowing what's going on in his brain

                              Comment

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