tecfidera

25Jul13

Some of the recent buzz in the MS disease-modifying therapy community (fancy term for “drug”) is the release of Tecfidera, the trade name for BG-12, a few months ago. This is one of the few oral DMTs available–almost all of the drugs we use for our MS are injections. (I could geek out about why that’s the case……… but I’ll spare you guys.)

(Photo credit: tecfidera.com)

(Photo credit: tecfidera.com)

The only other commonly-used oral is Gilenya, which is a stronger medication with a different mode of action, and therefore has more potential side effects. But this new drug (Tecfidera) is on par with Rebif, one of the standard drugs given patients newly diagnosed with rrMS.

I have been injecting Rebif for 10 months, myself. I have only had the one relapse, and that was prior to starting the drug. I don’t know if Rebif has played a role in keeping my disease in remission, as there have been so many variables, but–there’s a good chance it has.

So, despite my having started to have injection site reactions (at this point, just irritations on my skin), I’m going to stick with what’s been working. Tecfidera supposedly does the same thing, but what if my body reacts to it differently, especially since everyone’s MS is different? Not a chance I’m willing to take.

If you’re wondering, then, if there is a market for Tecfidera–unfortunately with all of the new MS diagnoses, a lot of new patients are being places on this new drug. The good news is that they can avoid the needle, other than steroid infusions for acute flare-ups.

And some people really do get fed up with injections: one of my neurologists told me last week that an MS patient of his hadn’t had a flare-up in 9 years while injecting Copaxone (mind you, that’s a daily injection). She insisted on changing to Tecfidera immediately. I really hope it works out for her…

For me, I’m sticking (ha! I made a funny) with what works.

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2 Responses to “tecfidera”

  1. 1 thisjerseygirlinla

    Reading through a couple posts in your blog now- I am also on Rebif. Started in April. Can you explain the skin-site reactions? Is it just surface irritations?
    I talked to my Neurologist about switching to Tecfidera, but we decided same as you, let’s see how I do on Rebif for awhile until I really can’t take the needle any more.
    But I’m taking Klonopin every other night just to be able to stick… And I don’t want to be doing that forever..
    Anyway, thanks for your blog posts. In a world already isolated behind computers and technology, it’s good to “connect” with others who also share a disease that can be so isolating in itself.

    • Hey, Thea! Yeah, definitely great to connect with others–I don’t know if you get the mailings with your Rebif Rx that talk about frequent support groups and talks, but I’m worried about the degree of disability that I’ll see around me if I go to one of those… I dunno, I just feel more comfortable connecting to people online for now. 🙂
      I seem to be different from most: I started out with *zero* injection site reactions. Maybe a tiny bit of redness. Hardly any pain. No side effects. I think it was the beginning of this summer that they really became noticeable (when it started getting warm, temp over 70 degrees on average). I’d have a 2-3 inch radius pink mark, sometimes a knot that’s sensitive to the touch for weeks (not something I want to reinject for a while), and I also started experiencing the fever/chills a few hours afterward (would wake me up in the middle of the night). Advil seems to help the flu-like effects.
      I’m confused as to why your dr has you taking Klonopin? Isn’t that just a muscle relaxant? I don’t see how that would help Rebif side effects. I’d think they’d want you more on a potent anti-inflam, and I didn’t think a benzodiazaprene (I believe Klonopin is in that category?) has that effect–more anti-convulsant/muscle relaxant? (Helps you sleep and relax… but not what you’d need…)


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