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  • waltzing_matilda

    I saw my neurologist today.  We have been discussing switching me from Gilenya (which doesn't seem to be doing anything for me) to Ocrevus.  I almost pulled the trigger on the switch today (at least the preiminary parts) but I chickened out.  I am terrified at the idea of stopping Gilenya because some people who go off of it have major relapses.  I am also terrified of starting Ocrevus because of the risk of PML.  PML has been seen with both drugs, but so far I have had no issues with Gilenya.  My lymphocytes are really low, but not below the threshold.  My doctor told me that some of the people who have gotten PML while on Ocrevus have become sick after stopping Gilenya and starting on Ocrevus.  She wants my lymphocyte count to come up before I make the switch.  That means stopping Gilenya and having my blood tested until she sees an increase in lymphocytes.  In the meantime, my immune system could wreak havoc on my CNS with no DMD to stop it.  (My only relapses have taken place during the washout period between drugs.)  I was going to start the process today but chickened out.  PML is a death sentence, either literally or figuratively.  I'm so scared.

    Has anyone on here successfully switched from Gilenya to Ocrevus?

  • Chrissyny
     I’m curious, how long you had MS? Also what other medications your taking. And how long have you had this doctor?  
     Go with your gut. 
    When my doctor “recommended “ Ocrevous to me
        -made a point that it will target my spine/back
        -  at this office visit/recommendation, the medicine was only on the market for 13 months. For me that was too early to decide any other possible side effects not including PML which is very serious 
       -‘while you decide....fill out the paperwork so we can be ahead of things I.e. insurance company ‘  something to that effect.
     It was like I had to make a decision at that office visit and at the same time make it right away because we’re going to get the paperwork to the Sharon’s company so we know that you’re covered.
    That seemed a little odd to me, what’s more important getting approved by the insurance company or taken MYsituation into account.
    News update, I DID NOT GO WITH meds Ocrevous.
    i am a patient, not a science project.
     
  • golgotha
    It was like I had to make a decision at that office visit and at the same time make it right away because we’re going to get the paperwork to the Sharon’s company so we know that you’re covered. That seemed a little odd to me, what’s more important getting approved by the insurance company or taken MYsituation into account.


    No offense, but I have to wonder if you read that wrong. Ocrevus is a "humanized" version of another older drug used for MS. With that change the drug company got a new patent. Thus, Ocrevus is expensive, something like $60K or more for a year's treatment.

    If you have typical for-profit, private health insurance, that insurance company's goal is profit and not necessarily your health. I'd guess that's why the doctor wanted to ensure he got the paperwork in fast -- to make sure Ocrevus would be paid for.

    Many health insurance plans want to start MS patients off on cheap drugs. That's fine for their profit margin. If the patient then shows new lesions on the cheaper drug only then will the insurance corporation move the patient to a more expensive drug.

    But the issue here should not be cost -- at least from the patient's point-of-view.

    The issue of the drug should be a high efficacy/effectiveness on MS! And, of course, side effects. Copaxone, for example, does not have a high efficacy, but it has relatively low side effects and it's cheap for the insurance company.

    Think about that dynamic: The for-profit health insurance corporation is saying to make them money, they're willing to put you on a cheap drug, use you as a guinea pig, and only when you develop more permanent brain damage will they move you to a more effective, more costly drug that will impact their profits more.

    Isn't that exactly what is going on here? Seriously, correct me if I'm wrong.

    Since I'm the patient and since it's my brain that is being damaged, my opinion is that I want the best, most effective, highest efficacy drug from the start -- and damn the private, for-profit health insurance corporation's profits. Just my blunt opinion.

    i am a patient, not a science project.


    Since I'm on Ocrevus, please don't think I'm defending that drug. I want the drug with the best efficacy/effectiveness -- in other words, I'm selfish and am only concerned with my health. :)

    Ocrevus is a serious immuno-suppressant, only semi-recently FDA approved. I just noted your "science project" comment and if there's some danger or something I should know about Ocrevus, please clue me in. TIA.
  • waltzing_matilda

    I'm an RN.  I don't go with my gut.  I research and base my decisions on evidence.  I was in a very dark place when I posted this.  Right now I'm not as scared.  I just want to make an informed decision.

    I got my diagnosis in 2002.   I've gone from Copaxone to Tecfidera to Gilenya.  I totally trust my doctor.  I'm also taking Ampyra and some other stuff, none of which imapcts immune function.

    PS - We are all science projects.  The Doctors don't fully understand this damnable disease.  They're just throwing stuff at it to see if it sticks.

  • phillyirish75
    Good morning,
    I actually have successfully switched from Gilyena to Ocrevus due to me acquiring new lesions while on Gilyena. Myself and my sister both have MS we have switched to Ocrevus, she has Progressive MS and myself I have Secondary MS. I really do not have any complaints at all since I started it last year, of course there are always the side effects while receiving the infusion. Mainly go away the next day, I really cannot complain at all. The only complaint I had was being off any kind of therapy for over 6 weeks before I could start Ocrevus, unforunately my neurologist isn't the best so basically I had no therapy for over 4 months. I went totally down hill during this time and acquired a new lesion on my spine along with the other two that started acting up. This is just my experience with this new infusion, but everyone is different just love that it is only every 6 months. Have a wonderful day and good luck to you!!
  • golgotha
    PML is a death sentence, either literally or figuratively.


    When you get down to it, life is a death sentence. :)

    While listening to one of this doctor's videos (search for PML) if I recall correctly he said that the death rate of PML was no longer 100% (something like 30%; can anyone confirm I've got that right (or wrong)?).

    I am also terrified of starting Ocrevus because of the risk of PML.


    Knowledge is power (at least in most cases). Check out these videos about Ocrevus. As I recall, there was 1 PML case regarding Ocrevus. But that person was actually on 2 DMDs, so the case couldn't be assigned to Ocrevus because of the unusual circumstances and the fact the other DMD used with that person had a confirmed PML risk. (I could be wrong on that story, but I think I've got it right.)