Why I’m Sticking to My Therapy

My daily dose of hope... errr, I mean Copaxone.

My daily dose of hope…errr, I mean Copaxone.

I’ve heard a lot of talk recently about the new oral therapy, Tecfidera, approved by the FDA last spring for multiple sclerosis. It’s the third oral drug aimed at treating my disease.

In one of the many articles announcing the news, the New York Times wrote: “While self-injected medicines like Avonex from Biogen and Copaxone from Teva that entered the market in the 1990s are still used by the majority of treated patients, newer oral drugs are making inroads. In addition to Tecfidera, the other two oral drugs are Gilenya from Novartis, approved in 2010, and Aubagio from Sanofi, approved in September.”

I’m still on my injection therapy, Copaxone, but I consider this new drug to be great progress for the MS world. I think back to 1994 when I was diagnosed; at the time there was only one therapy available. One! I was on Betaseron for over two years before switching to the new Avonex because a once-a-week injection sounded much more appealing than an every-other-day injection. But I suffered from horrible side effects while on both therapies. I felt like I had the flu 24/7, making it difficult to work full time and take care of my baby boy as a single mother.

When Copaxone hit the market in 1999, I was eager to try it. I’d done my research and knew the side-effect profile was much different from the therapies I’d been struggling with for five years. It is a daily injection, which I know a lot of people have a hard time with. But I decided that I would rather give myself a shot every day if it means my body will tolerate it without the miserable flu-like side effects. I’ve been taking my daily injection — or my daily dose of hope, as I like to call it — ever since.

I’m not symptom free, but I’ll be sticking (pun intended) to my injection therapy for now. The oral therapies are new and the proof that they work as well as injection drugs isn’t convincing enough for me. Not yet, anyway. I will admit that taking a pill once or twice a day sounds like a nice change from what I’ve been doing for more than 14 years. But as the saying goes, “if it’s not broken, don’t fix it.”

As an MS patient advocate, I have the opportunity to speak to many others who share my disease. A lot of these patients are newly diagnosed and have no idea which therapy is best for them; it’s always a personal decision for the patient to make with the guidance of his or her neurologist. I encourage everyone to be on some type of therapy, no matter how long they’ve had MS and even if they’re currently symptom free.

Why not do something to slow the disease down if you can? If one therapy isn’t working for you, try a different one. That’s what’s so nice about how far we’ve come in the past 20 years. Patients have a lot of choices now.

But we’re still not where we need to be because we don’t have a cure.

The FDA reminds us of this in its press release about the new drug Tecfidera: “No drug provides a cure for multiple sclerosis so it is important to have a variety of treatment options available for patients,” said Russell Katz, M.D., director of the Division of Neurology Products in the FDA’s Center for Drug Evaluation and Research. “Multiple sclerosis can impair movement, sensation, and thinking and have a profound impact on a person’s quality of life.”

So let’s stick with a therapy that works for us and do our best to stay healthy until we can get that cure.

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18 thoughts on “Why I’m Sticking to My Therapy

  1. Michael Mann says:

    I always find your posts both interesting and informative. Keep up the good work Tricia.

  2. Shawna says:

    I was on Betaseron for five years, then tried Copaxone. It appears I was allergic to something in it as I had horrible reactions. I then started taking infusions of Tysabri. I still have horrible side effects to my infusions, but they are holding my MS at bay. I’ve recently been asked why I put myself through it. Well, I’m not ready to give up yet. My MS has not given up attacking me, so I will not give up attacking it back! I have considered the new oral therapies, but I just can’t seem to gamble on an unknown while what I am doing is working for now.

  3. Allison says:

    What timing you have my friend. I was just at the Neuro for a re-check today and to let him know that I too have decided NOT to switch off Copaxone to Tecfidera. I made the mistake of switching to Tysabri a few years ago and it was detrimental to me and my MS. Thank you for sharing your wise words. Copaxone will remain my drug of choice!

  4. Paul says:

    thank you for continuing to post your thoughts. I enjoy following your “progress” and thoughts. I hope you have many more good days than bad.

  5. Hey Tricia — Just wanted to stop by and say hello! You’re a great writer – and a great spirit. We need more of you in this space. Thanks for your contributions to helping this community. And remember, sometimes it helps the stress, just to say “F-U-M-S”!!

    • LoveMyMSLife says:

      Kathy,
      Trust me, lately “FUMS” has been a common phrase I utter all too often. Thanks for stopping by to say hello, I admire what you do in our community!
      Love, Tricia

  6. I agree with you completely! We all need some kind of therapy and it’s great that we have so many new choices now. I started with Avonex in ’95, REBIF was next. The injections wore me down. Just couldn’t do it anymore. The orals got here just in time, Techfidera saved the day:)) Visited my Sis in NC last week and she said “what, no shot?” For me, the pill makes dealing with the MS more bearable. A pill (even one so new) is better than nothing, and that’s where I was headed.
    Good Luck to us all!
    Estizer

    http://msopenmic.com/

    • LoveMyMSLife says:

      Estizer,
      I’m glad to hear you’re one of those positive MS’rs that isn’t about to give up on therapy because one or two haven’t worked for you. Keep us posted on how you’re doing on Tecfidera, wishing you the best!
      Tricia

  7. Mel R says:

    Wanted to check in and say hello. So last time I posted my husband was going through the testing. He has been confirmed with PPMS :(
    He is doing alright though. He’s changed his diet completely & is feeling more energetic. One day at a time! How are you?

    • LoveMyMSLife says:

      Hi Mel, I’m sorry to hear about your husband. Follow “Love My MS Life” on Facebook and we can better communicate via messages. I’d like to know how you both are doing.
      Blessings! Tricia

      • Melanie says:

        Thank you for your concerns. I will follow you on Twitter and FB. Your blog is such a comfort for me to turn to when I’m feeling down and hopeless. Thank you very much. Keep it up and take care of yourself.

  8. Marty says:

    Tricia,

    Have you heard about Benztropine? It is an FDA approved drug for Parkinson’s diesease that my restore function to MS patients. It is early on in testing but what is exciting is that it is already FDA approved. So in my view the testing will be more about dosage than whether it is safe.

    Here is a link to a recent article:

    http://www.theguardian.com/science/2013/oct/09/parkinsons-disease-drug-multiple-sclerosis

    Marty

  9. Steve says:

    Hey Tricia. U still in the area?

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