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.
Do you live with any comorbidities aside from MS?