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    Tysabri to Ocrevus

    Hello Everyone. I have been on TY for several years. And it has been a blessing. I am so grateful.

    However, I had a JCV test in Sept. and it was Indeterminate....the follow-on testing showed negative, but my titer is moving up. So....I am seriously considering approaching my MS Specialist in Dec about Ocrevus. I think it is about time to possibly switch it up.

    Any of you personally have a bad reaction to Ocrevus? Also for those that switched from Tysabri, did you have a washout period before you started Ocrevus? And one final question....anyone get a Shingles shot prior to starting? I dont want Shingles. 😳
    Katie
    "Yep, I have MS, and it does have Me!"
    "My MS is a Journey for One."
    Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

    #2
    Hi Katie,

    First, let me say that the new shingles vaccine, called Shingrix, is not a live virus. Most neuros, if not all, recommend getting Shingrix. Certainly and absolutely, your neuro would not want you to get a live virus vaccine on Ocrevus. The reason is because Ocrevus wipes out a good part of the immune system which makes someone more vulnerable to infections, even a weak virus found in the older shingles vaccine.

    I don't really have any advice regarding meds. That is an issue best addressed by patient and doctor working together. But I will offer my perspective if you don't mind.

    I understand you to say you believe you are doing well on Tysabri but are afraid you will move from the gray area of "Indeterminate" to positive for JCV.

    A low JCV titer is characterized as one being below .9. Cases of PML are quite rare with a titer below .9. So, even if you became positive, your risk of PML is quite low if your titer is below .9.

    Have you been extending time between doses of Tysabri? That has been proven to reduce PML risk by about 90%. Some neuros don't want to extend dose unless a patient is JCV positive, others have agreed to.

    Since extending time decreases PML risk some believe increasing time may decrease the frequency of conversion from negative to positive. But right now that is a theory w/o proof. In time, data will emerge to support or discredit that theory. My personal opinion is that extending time will slow the rate of conversion from - to +. JMHO.

    If you ultimately make the switch from Tysabri to Ocrevus, as did my spouse who now has doubts about the wisdom of doing so because she definitely is more fatigued and several of her MS symptoms long repressed by Tysabri have returned... however that said, Ocrevus is a highly effective MS, also...
    but if you switch, the washout period should be as brief as your neuro is comfortable with.

    The reason is that you don't want a lapse in coverage which may give opportunity for MS to slug you; at least those are my thoughts. The good news is that Ocrevus quickly achieves a therapeutic threshold.

    The first infusion of Ocrevus is given in a half dose of 300mg with the second half two weeks later. Your neuro can provide the details of the benadryl and steroids they infuse to make the Ocrevus more easily tolerated. Some people feel okay but I think most feel like crap the day of infusion, especially the first doses, then becoming more tolerable for many.


    There are good and bad points regarding each MS med. At least, you are considering the two best ones, IMO, outside HSCT which isn't an option for many, and IMO is best suited for younger patients, anyway.

    I'm not saying you are older, I have absolutely no idea how old you are. There is no age cut off for HSCT. But it can be a tough procedure and the young do best. IMO.

    Good Luck, and God bless you whichever way you go!

    Comment


      #3
      Hello KatieAgain, I was on Tysabri for over 6 yr. I came off because of JCV+. I started on Tec. and my wash out period was 3 mos. I did not have any problem transferring. I am now on Ocrevus. I feel tired after infusion but I believe it is the Benadryl and sitting for 5 1/2 hrs.

      Wish you all the best.
      God Bless Us All

      Comment


        #4
        Hi Katie,
        I have been on Ty for over 13 years. I have been indeterminate .23-.30 (once or twice .20) for years. I am infused every 56 days for approx 3 years. I have felt if it ain't broke don't fix it.. when I talked to my Dr about Ocrevus and he told me it wouldn't keep my sx at bay like Ty. I will turn 71 next month; I feel my age has something to do with my body not doing as well as I want it to but, I still walk around my condo, cooking/baking a bit more difficult and I fall asleep (often) in front of the TV ! Oh well..
        Best wishes one and all,
        Linda
        Linda

        Comment


          #5
          Myoak- Thank you once again for a thoughtful and wise response. ❤️ It has given me much to think about and digest. BTW....I am 55 years young. 😊

          Reg53- I just started into my 7th year of Tysabri. Its been a really good run. Good Luck on Ocrevus.

          Linda-You are the Tysabri Queen! And you are right, if it aint broke....

          Thank you all for your responses, they were truly appreciated.
          Katie
          "Yep, I have MS, and it does have Me!"
          "My MS is a Journey for One."
          Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

          Comment


            #6
            Hi Katie,

            Nice to hear from you again. 😊 Good to hear you've had a good run with your MS on Tysabri, too.

            My MS Specialist had me wait 8 weeks between the two. For me, Ocrevus seems to working better than Tysabri. The only side effect I've had is starting to feel dizzy during my infusion. I just lay back in my chair and am fine.

            Other than that, it takes longer. The premed infusion is 1 one hour and Ocrevus is 2 hours. There is also a 1 hour observation period afterward. They allot a 5 hour appointment for the entire process. So, it's a long day and I'm tired just because of that.

            I was still JCV-, but since I was treated with Cytoxan before, I was considered a higher risk for PML if I became JCV+. So I would not have been allowed to stay onTysabri if my status changed.

            Our CEO, Alan Mandel, had a high titer of 3. He was very knowledgeable about about extending the infusion period, and was able to so with his MS Specialist's approval. In addition to the JCV blood test, he also had more frequent MRIs and lumbar punctures to detect any sign of the JC virus. Unfortunately, he still got PML. So, there is still that risk.

            Good luck with what you and your neuro decide is best for you!
            Kimba

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

            Comment


              #7
              Hi Kimba- So nice to here from you. And so sad to hear about Alan. 😞

              I would stop TY permanently if my Titer went above .4. That is my threshold for anxiety, however each of us is different.

              I am glad to hear Ocrevus is working well for you.

              I am really grateful for all the new MS Drugs...I know we still have a way to go but it sure beats the Original Crab Drugs...for me Avonex was the worst.
              Katie
              "Yep, I have MS, and it does have Me!"
              "My MS is a Journey for One."
              Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

              Comment


                #8
                Avonex was the worst by far for me also..
                God Bless Us All

                Comment


                  #9
                  Does anyone know how long Alan was on Tysabri? Was it longer than two years? I am JC+ at about 1.75-2.10 and have been on Tysabri for 1 year. The plan is to go one year more and then change but I had considered extending the length of time between infusions instead of changing drugs. His story gives me pause for sure. Very sad. If anyone knows more details, I'd be curious to hear. Thank you.

                  Comment


                    #10
                    Hi Shawshank,

                    Yes, it was longer than 2 years. I think he was on Tysabri approximately 9 years.

                    Please discuss your concerns with your neurologist. Best wishes.
                    Kimba

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

                    Comment


                      #11
                      Originally posted by Kimba22 View Post
                      Hi Shawshank,

                      Yes, it was longer than 2 years. I think he was on Tysabri approximately 9 years.

                      Please discuss your concerns with your neurologist. Best wishes.
                      Thank you Kimba...

                      Comment


                        #12
                        Good morning!
                        I was only on Tysabri for a year before i knew i needed to switch. I'm a hard stick for needles and I didn't feel well on Tysabri. Dehydrated, fatigue and just not like me. I actually switched to Mayzent. A pill a day! What a difference. I feel normal again.

                        I think i had to wait four weeks after coming off Tysabri before being able to start Mayzent. I noticed more anxiety feelings and uneasiness when i was "due" for my next infusion but luckily i started Mayzent at same time so it didn't last long.

                        Ocrevus was going to be my next choice however i couldn't take the needle stick. My veins didn't want to cooperate

                        Best of Luck.
                        Dx March 2018; possible first episode: August 2011
                        Tysabri May 2018-June 2019, Mayzent July 2019

                        Comment


                          #13
                          Copaxone to Ocrevus

                          Originally posted by KatieAgain View Post
                          Hello Everyone. I have been on TY for several years. And it has been a blessing. I am so grateful.

                          However, I had a JCV test in Sept. and it was Indeterminate....the follow-on testing showed negative, but my titer is moving up. So....I am seriously considering approaching my MS Specialist in Dec about Ocrevus. I think it is about time to possibly switch it up.

                          Any of you personally have a bad reaction to Ocrevus? Also for those that switched from Tysabri, did you have a washout period before you started Ocrevus? And one final question....anyone get a Shingles shot prior to starting? I dont want Shingles. 😳
                          Hi,

                          I was on Copaxone for 4 years and had a major flare - 3 new brain lesions in 5 months. My doctor and I discussed all options, including Tysabri. We decided on Ocrevus.

                          I had my flu shot about a month before my first 1/2 infusion. My doctor didn't recommend the shingles vaccine (I am only 48). I had no problems with either of my infusions, other than being tired after from the benadryl and the long day. I felt perfectly fine the day after both infusions. I haven't noticed any real changes in my symptoms, other than I think they are getting better, but that could just be my brain "rewiring" and the symptoms going away with time. I have had no fatigue (but that was never one of my symptoms).

                          I am very happy so far, for my decision to change. I wish you the best in whatever you decide. Always a hard decision.
                          Diagnosed RRMS 4/7/15, symptoms for 8 months prior. Copaxone 4/27/15

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