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Tysabri, Rebif, Gilenya, or some drug I couldn’t pronounce?

It was all going so well. I totally had the daily injection routine down. Wake up. Go to work. Come home. Inject Copaxone. Clean injector. Eat dinner. Watch some TV. Go to sleep. Repeat. I was on a roll and starting to get used to my life with MS.

Until one day in March 2012, during a follow up visit with my neuro…

As happened with all of our visits together in the exam room, my neuro opened up my file and projected the latest MRI images of my brain and spinal cord. We studied the pictures. A new lesion appeared along my spinal cord. “This is quite serious,” my neuro told me. So began our discussion about options for stronger treatment. #&%$!

He presented me with four choices for my next move: Tysabri, Gilenya, Rebif or participation in a trial with a drug I couldn’t pronounce. Four choices. Four very different drugs. After discussing each option together, I left my neuro’s office armed with pamphlets (or, really, drug books because the “literature” is quite extensive) and went on my merry way. I was completely overwhelmed and consumed with thoughts, “My MS situation is more serious? Wait, what? A new lesion? Along my spinal cord? I have to switch drugs? Aren’t these drugs dangerous? Like, haven’t people died while on Gilenya? How on earth am I going to make this decision?”

And making the decision was not easy. To help, I gathered Intel and, in between calls and visits with my neuro, asked myself three questions:

What did the numbers say? Numbers don’t lie so I studied the statistics in the drug books and on line. Lots of data! I was very excited. After all, I am a number cruncher by day. I read there is a 50% reduction in relapses for Rebif vs. Avonex1, Gilenya cut relapses by 52% vs. interferon beta-1a IM2 and with Tysabri, relapses decreased by 67% vs. placebo3. Pages and pages of data and simply not enough space here to jot it all down! But, this was a critical phase. I needed to understand the numbers and the benefit of each drug.

What did the people say? After reading the drug books I became interested in first hand stories of folks’ experiences. So, I searched and searched and searched the web for the chatter between other MSers. I started discussions and read blogs. The online MS community was (and still is) awesome; everyone was so supportive in sharing personal experiences.

One person wrote about how well she was doing on Gilenya. She loved taking pills and had no side effects from the drug.  Another person described her experience being on the drug trial. Lots of people shared stories of how well Tysabri was working for them yet others expressed their fear about getting PML. These insights were uber helpful.

What were the side effects I was willing to put up with? Next, I needed to better understand the side effects and start narrowing things down. Rebif? Out. I ruled this one out early on. I was not interested in dealing with the side effects (flu like symptoms on a regular basis? No thank you) and, per the stats, felt it wasn’t strong enough. Ocrelizumab trial? Out. The ‘test subjects’ were still injecting Rebif. Hmmm, I had already ruled that one out. Side bar – just how does one pronounce Ocrelizumab anyway?

So, it came down to two choices, Gilenya or Tysabri. Or, as I sometimes asked myself, “Would you like pills or monthly infusions to treat your MS?” Admittedly, I was intoxicated by the idea of taking a few simple pills and first leaned towards Gilenya as my drug of choice. Yet, the idea of taking this drug always scared me. I knew that a couple of people of died while taking Gilenya. It was all too scary.

I chose Tysabri. I got comfortable with the very, very small chance of developing PML (1 out of 1,000) and knew that I would be closely monitored. My neuro and I felt it was the strongest treatment for my MS. And strong it has been. Twelve infusions later, it’s been without incident (no major side effects). My latest MRI scan revealed no new lesions and I had no relapses! Yeah!

Choosing treatment is not easy. And, when presented with choices, it can be overwhelming. My advice is to gather Intel. Ask questions, collect data, understand the side effects and seek out first hand stories. The insights may empower you.

Best always,

Christie

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

1. http://www.rebif.com/pages/about-rebif/rebif_vs_avonex 2. http://www.gilenya.com/c/whats-in-it 3. http://www.tysabri.com/tysabri-treats-relapsing-ms.xml

Comments

  • Christie Germans author
    5 years ago

    @ThisBSMS, stressful indeed. It’s tough enough dealing with MS yet alone choosing the right therapy. Hope Copaxone is working well for you. Hugs! C.

  • ThisBSMS
    5 years ago

    I was going through this last year and it was very stressful to say the least. And kind of decided on Gilenya then, until I was told that my insurance won’t cover it and I would have to pay $5K a month. Plus some possible scary side effects. Anyway, I can’t afford it. I said, I’d rather rest all the time at home, take care of myself and not work. With Gilenya I would be giving away more than I actually make a month and I work long hours. Crazy. Tysabri seemed like a scary option bc I tested positive for antibodies. Still, they recommended I try it, b/c there are patients all it with JVC antibodies. So I am back to Copaxone. I am hoping it is working. You never know through. This condition is so unpredictable and I feel that despite all the research that there is out there, no one really knows if the drug is in fact working, so for now I am convincing myself that it is. 🙂 haha. I am glad you are doing well!

  • lmitchell76
    6 years ago

    I’ve had to go through a trial and error with my therapy. I was first started on Rebif and the side effects were horrible and I still kept having new lesions show up on both brain & spine. I was switched to Copaxone and then had another exacerbation and my doctor started me on an Iv infusion of IVIG. I had a 5 day course in the hospital and now get it by home Iv infusion once a month. I still take the Copaxone also. It like many of the other treatments doesn’t work for everybody but for me this has been a miracle! It is compiled from donated blood and has been shown to work for M.S. but not FDA approved for the treatment of M.S., but for other diseases. The side effects are also not quite as scary as some of the other infusion therapies but like I said it is not for everyone.

    Good Luck

  • Christie Germans author
    6 years ago

    Yeah! So glad to hear that the home IV infusion is working so well for you, especially after trying the other medications. Thanks so much for sharing your story. Best, Christie

  • Donna Rivera
    6 years ago

    Christie, your post mirrors almost exactly what happened to me. A new lesion was recently found on my spine (actually two places, C2 and T2). I was comfortable with my Copaxone shots. Neuro suggested something new… Tecfidera, an oral medication just recently approved by the FDA. Currently waiting on my insurance company’s approval. Fingers crossed – good luck to you and thank you for your article.

  • virginia
    6 years ago

    Hi Donna that’s what is happening to me too . After 10 years of copaxone MRI says a lesion on spine and Copaxone supposedly not working. I am excited about Tacfidera (bg12). See new Neuro on 4/29 cause we have moved so pray he agrees.

  • Christie Germans author
    6 years ago

    Hey Donna. So glad to hear your neuro prescribed Tecfidera for you and look forward to hearing how you do on it. And, of course, good luck with the insurance company! I hope that lesion along your spinal cord is not causing too much grief for you and that you’re feeling alright these days. Best, Christie

  • tiredteacher
    6 years ago

    I wasn’t a good candidate for Tysabri. That is depressing.

  • Christie Germans author
    6 years ago

    Tysabri is certainly not for everyone. Hopefully, one of the other MS treatments available on the market will work out. What has your neurologist prescribed? Best, Christie

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