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    #1

    What would you do?

    I was diagnosed 4 years ago with very minor symptoms - all sensory (vibrations in legs). I have been on Copaxone since that time with no issue.

    However, I think I am currently having an exacerbation - more sensory symptoms, but in a place where I never had them before (numbness/tingling in my face). My doctor is being proactive and is going to have me get an MRI. She said if there is a change, we would discuss a medication change. I was all for Copaxone but if I am getting new lesions, I want to switch. Four years is a pretty good run on that med.

    So, here's my question - what would you do at this point? Would you change to a more effective oral med (I am thinking Gilenya is the option I would choose), or would you go for a "big gun" like Tysabri (I don't think I am the point of considering Ocrevus)? I am just seeking your opinion, so all opinions are welcome
    Diagnosed RRMS 4/7/15, symptoms for 8 months prior. Copaxone 4/27/15
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    #2
    Originally posted by Boymom123 View Post
    I was diagnosed 4 years ago with very minor symptoms - all sensory (vibrations in legs). I have been on Copaxone since that time with no issue.

    However, I think I am currently having an exacerbation - more sensory symptoms, but in a place where I never had them before (numbness/tingling in my face). My doctor is being proactive and is going to have me get an MRI. She said if there is a change, we would discuss a medication change. I was all for Copaxone but if I am getting new lesions, I want to switch. Four years is a pretty good run on that med.

    So, here's my question - what would you do at this point? Would you change to a more effective oral med (I am thinking Gilenya is the option I would choose), or would you go for a "big gun" like Tysabri (I don't think I am the point of considering Ocrevus)? I am just seeking your opinion, so all opinions are welcome
    I would suggest you wait for results and then discuss your moves with your neurologist.
    I would also suggest you study options in more detail. Ocrevus/rituxan has a better safety record than the other drugs you mention. Did you realize that? It also is usually tolerated very well. Very few side effects...for most .
    "Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

    Currently on rituxan

    Comment

      #3
      Glad you doctor is being proactive. Hopefully no new lesions. If you do have to consider a new med, have you had a JCV test yet? That may help you determine if Tysabri is an option. PML is he biggest risk with Tysabri, but negated if JCV negative. If positive, it depends on the JCV titer, then may be managed based on dosing schedule and length of time on the med.

      I am partial to Tysabri as I have been on it for awhile. I started on Avonex, then Rebif. Tysabri stopped my relapses. I am fortunate, as still JCV negative in my 8th year.

      Keep us updated. Hope you get good news.
      Kathy
      DX 01/06, currently on Tysabri

      Comment

        #4
        Tysabri and Ocrevus

        The last time I was tested for JCV (4 years ago) I was negative. If I am still negative, Tysabri is definitely a consideration.

        Regarding Ocrevus, I was just reviewing my medical plan and I think it is a tier 2 drug - I will need to fail on two drugs to get it covered by my insurance.
        Diagnosed RRMS 4/7/15, symptoms for 8 months prior. Copaxone 4/27/15

        Comment

          #5
          Originally posted by Boymom123 View Post
          The last time I was tested for JCV (4 years ago) I was negative. If I am still negative, Tysabri is definitely a consideration.

          Regarding Ocrevus, I was just reviewing my medical plan and I think it is a tier 2 drug - I will need to fail on two drugs to get it covered by my insurance.
          Tysabri is a no brainer in terms of efficacy, and if you are an organized person who can follow its protocols (infusion schedule, risk management) then ideally it will be easy. There is one infusion center my insurance will cover me at, in a 100 mile radius - I know others have to go further. There are some little things like that, you might consider as part of your decision. Biogen is great at helping with locating sites that work with your insurance, and also with funding. Call them too as part of making your decision.
          All the best, ~G

          Comment

            #6
            Originally posted by gargantua View Post
            Tysabri is a no brainer in terms of efficacy, and if you are an organized person who can follow its protocols (infusion schedule, risk management) then ideally it will be easy. There is one infusion center my insurance will cover me at, in a 100 mile radius - I know others have to go further. There are some little things like that, you might consider as part of your decision. Biogen is great at helping with locating sites that work with your insurance, and also with funding. Call them too as part of making your decision.
            I also meant to say, your doctor might know ways/language/justifications for getting your insurance to cover Ocrevus. My first DMT is Tysabri which is also considered a Tier 2 by my insurance but my Dr got it approved.
            All the best, ~G

            Comment

              #7
              Good afternoon

              Personally, i couldn't handle Tysabri and it wasn't because of the medication but more of the process. Every four weeks leaving work to go get an infusion, feeling like i was constantly at the doctors and feeling like a pin cushion is what changed my mind after a year on it. However, my veins didn't cooperate either so it made it more stressful.

              Recently switched to Mayzent which so far, so good. I actually feel more like me where with Tysabri i felt dehydrated and fatigued all the time.

              Different medications work for different people but the process of the medication is important in decision making i have learned.

              Best of luck and please keep us updated!
              Dx March 2018; possible first episode: August 2011
              Tysabri May 2018-June 2019, Mayzent July 2019

              Comment

                #8
                I don't feel like I'm very up-to-date on knowledge about all the meds. I've been on Copaxone since 2008; Betaseron before that. So, my experience is with the older, injectable meds.

                When I've asked my MS Specialist about the newer meds, she generally discourages them in my situation because Copaxone has been effective for me and has fewer possible risks and side effects than the newer meds.

                You've been given some good advice here, to discuss your options with your neurologist. Best wishes in making a decision that you're comfortable with.
                ~ Faith
                MSWorld Volunteer -- Moderator since JUN2012
                (now a Mimibug)

                Symptoms began in JAN02
                - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08                .
                - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                Comment

                  #9
                  I was told by a former Indiana MS Society staff member that the national MS Society was successful a few years ago in lobbying against the step therapy requirement for MS DMD's. I have not confirmed this as I am on Rebif, but might be worth a call to your insurance carrier.

                  Comment

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