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    switching (probably)

    My neurologist doesn't want me on Tysabri because of my "mild" MS. In May I converted to positive at .97 from a negative result two weeks before. Most of the other meds were equally unattractive, but I thought BG12 would be the best fit.

    On the 31st I will be 12 weeks out off Tysabri. On the 16th of June I informed my neurologist I would become a "switcher" to Tec. One week was eaten up by the neuro's office sending out and my returning the start form. Then, Biogen had to do insurance investigation, find specialty pharmacy, etc. On the 1st I followed up and they said the specialty pharmacy did not get the script, so they resent. That brought us into this week, where I was told my insurance would not cover it at all, which is confusing because I know B does the investigation first.

    Now, Biogen says I should sign up for a benefits card for drug charity. I also msg.ed my neurologist on Friday because maybe she can do an appeal? This med is so much cheaper than infusing Tysabri at a hospital. Everything is a fight with them. That's why I want to preserve neurological function, because they will kick me into a storm gutter and let me die if I lost ten more points off my IQ and can't advocate for myself.

    I don't know how swiftly drug charity moves, but my guess is not too fast. I'm sort of tempted to get a final dose of Tysabri to "buy" three more months. I'm seeing white pinpricks of light, which was a sx that I haven't had for over a year. I've read that 7 out of 10 people rebound after stopping Tysabri and I was hoping to mitigate this by starting a new DMD and LDN, which I can't get scripted by anyone. I never knew it was possible to urinate away so much time and not make any progress. Looking at PML lesions until 3 AM isn't a good fit for me, but probably better than rebound MS? Can't B just fling me the starter pack in the mail with no red tape? Arrggggg.

    Am I being neurotic and overworrying all of this? My mom is here from FL helping me make meals. She says I don't seem to be doing well re energy and weakness. I thought she was going to help me transition to BG and monitor for reactions and breakthrough disease but she will have to leave soon to maintain her home. She suggests I quit my job and go back with her but I have unused sick and vacation time and have a lot of things to figure out in order to do that. I think if I were my own patient I would say get the Tysabri, but I'm me and I just have these dogs chasing their tails in my head all day and I constantly second guess myself.

    #2
    Dyin, I'm so sorry to hear this.

    It's summer. You teach. Could you go home for 6 weeks and negotiate these issues by phone while being taken care of otherwise?

    You're deep in the weeds and I don't see any guaranteed answer. Sometime you just have to pursue every path until one works for you.

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      #3
      Dyin,

      As you know, everyone is different with how meds work, and what helps and what doesn't.

      With so many options, I would list the positives and negatives for each option, and make your choice from that.
      Nobody knows you better than you, and you are educated about this miserable disease. You are your own best advocate.

      Funny how our lives now rotate around blood draws and tests, Neuro appointments, MRI's, infusions, shots, or pills.
      No vacations or a real life any longer. Just getting by each day.
      Good luck

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        #4
        Originally posted by dyin_myelin View Post
        Now, Biogen says I should sign up for a benefits card for drug charity. I also msg.ed my neurologist on Friday because maybe she can do an appeal? This med is so much cheaper than infusing Tysabri at a hospital. Everything is a fight with them. That's why I want to preserve neurological function, because they will kick me into a storm gutter and let me die if I lost ten more points off my IQ and can't advocate for myself.

        I don't know how swiftly drug charity moves, but my guess is not too fast. I'm sort of tempted to get a final dose of Tysabri to "buy" three more months. I'm seeing white pinpricks of light, which was a sx that I haven't had for over a year. I've read that 7 out of 10 people rebound after stopping Tysabri and I was hoping to mitigate this by starting a new DMD and LDN, which I can't get scripted by anyone. I never knew it was possible to urinate away so much time and not make any progress. Looking at PML lesions until 3 AM isn't a good fit for me, but probably better than rebound MS? Can't B just fling me the starter pack in the mail with no red tape?
        DyinMylin, I'm sorry to hear this. I am surprised that B will not provide for you for free as part of their patience assistance program that all drug companies do. I thought I read on this board that they do provide it if there are insurance issues. Is it simply because you HAVE insurance and your insurance doesn't cover it that they are making you do a drug charity? I haven't heard of that before. If you didn't have insurance I understand they provide it. This is very confusing. May be Marco here has an understanding about this and can help. Again, I thought the drug companies help out those who don't have insurance or have insurance issues. Is there any option your neuro can "rebut" the insurance company that Tec is the best drug for you right now?

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