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SPMS and Ocrelizumab????

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    SPMS and Ocrelizumab????

    My insurance wouldn't cover the recommended Rituxin before Ocrelizumab was approved so I went abroad where I could afford it. Now my insurance doesn't want to cover Ocrevus because I am SPMS. Is or was Ocrevus ever tested on SPMS'ers? Does anyone know if it will be? Rituxin kept me stable for 13 months, now I am beginning to decline while waiting for insurance appeals.

    #2
    Can you go back abroad and get more Rituxin while you are waiting? I think this is the reason doctors keep everyone RRMS, so the insurance will cover all the DMTs. Maybe get a different doctor to change your diagnosis as a second opinion.

    Take care of yourself. I will pray you don't progress more.

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      #3
      India

      Thanks for replying Palmtree! I appreciate the idea to get an opinion that says RRMS. I had no idea how that was going to be a problem at the time my doctor said she thought I had moved to the next category. I would go for Rituxin again, but I have missed my "heat" window of opportunity. It was darn hot in April, but is BLAZING now! I waited because Ocrevus was supposed to be approved in April Then the FDA delayed. Now I'm told I can't have it...UGH! I'm getting a second opinion appointment!

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        #4
        Hi Claudia C:

        I replied to your post under Rituxan Infusion here in the Medications subforum, so you can get the details there.

        The critical point is that FDA, not your insurance company, decides what uses a drug is approved for. The NMSS website explains their interpretation of "relapsing forms of MS," which includes SPMS that includes relapses. Ocrevus is approved for relapsing MS, not specifically only relapsing-remitting. The NMSS medications brochure gives you possible treatment options for relapsing forms of MS.

        If you're able to get a statement from the FDA or possibly from Genentech that indicates that SPMS is included in the approval for relapsing MS, your appeal with your insurer could go much more quickly and smoothly. Maybe not, but they won't be able to dispute the approval -- they'll have to obstruct you in a different way.

        You might benefit from seeking a second opinion solely for the purpose of getting a diagnosis of RRMS instead of SPMS, you might not. There's still a lot of details you haven't told us, so we can't tell if that would be making things harder than they need to be.

        Have you talked with your neurologist and told her that your insurance company denied Ocrevus because of the SPMS diagnosis? She was just doing her job and probably couldn't have predicted what your insurance company did. Have you asked her whether she would be willing to reconsider and change the diagnosis back to RRMS? She can't help you if she doesn't know, and she might be willing to do that if she's presented with the situation and the opportunity properly (e.g., not accusing her of making a mistake -- see my post in the Rituxan thread). A bird in the hand is worth two in the bush.

        If you go to another neurologist for another opinion, hoping for a different diagnosis, are you thinking that the new doc, having just met you and knowing very little about you, is going to cough up an RRMS diagnosis at the very first visit?

        A prudent doctor isn't going to just assume that a previous diagnosis -- RRMS or SPMS or MS at all -- is correct. The new neuro will want to delve into your history and run some tests to confirm a diagnosis for him/herself. And then, based on your test results and history, s/he may want to follow you for a few months before deciding on a diagnosis.

        And the new neuro may have different ideas about meds and treatment than you do. So you could be 6 or 8 months out and be no farther along or better off than you are now. Then what would your plan be? Another opinion and another 3 or 6 months gone?

        So if you haven't talked to your current neuro first and investigated possible treatment options in a different light (see my post in the Rituxan thread), you could be passing up an opportunity to significantly simply the situation.

        If you have and she flat-out refused to help you, that's very different. Being aware of the time lag a diagnosis from another neuro might take, you might even consider making appointments with two different neuros as soon as you can get them and then going with what looks more promising. (Being a patient can be really hard in so many ways.) Good luck.

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