While there is no cure for MS, there are several medicinal options that aim to reduce the frequency and severity of attacks and prevent new lesions from developing. I remember researching MS treatments online after my diagnosis and there must have been 12 of them to choose from…
There were the shots – like Rebif, Avonex, and Copaxone – that have been around for a while, and then the newer treatments like the pill (Tecfidera) or the IV infusions (Tysabri). To be honest, there wasn’t one that screamed the “best” option since they all came with their own risk and side effects commonly including diarrhea and vomiting, flushing and skin irritations. Lovely, right? Off the bat, the thought of giving myself shots regularly made me queasy and that’s without the flu-like side symptoms that came after it. The pill and infusions sounded easier without question but they also didn’t come without their own risks. Ultimately, this would be a decision I would need to make with my doctor.
Finding the right doctor was essential. I needed more than just a drug; I needed confidence that I would be okay and a path to take me there. I needed a treatment plan customized based on my specific type of MS and I wouldn’t settle for less. Thanks to a new friend who also has MS, I met Dr. Dusan Stefoski who specializes in neurology at Rush University Medical Center. I truly believe this doctor is the reason I have a positive outlook and confidence in my future. Simply put, he’s brilliant and one of the MS industry leaders. He’s confident and knowledgeable and while he looks intimidating, he has a surprisingly warm bedside manor that’s imperative in this kind of situation. And while his tell-you-how-it-is disposition can be scary, you always know all the facts so I personally appreciate his bluntness. Needless to say, I loved him from the start and instantly trusted him as my doctor. (Note: if you are looking to book an appointment with him, it usually takes 6 months so schedule it before you need it!).
Without question he told me that I needed to start Tysabri, a drug administered through IV infusion. Since it appeared that I had this disease for quite some time but didn’t know it, he wanted me to start this aggressive yet effective drug immediately to essentially nip it in the bud. I wanted the best drug on the market to control this disease and Tysbari had the highest effectiveness rate of them all at 68% (which believe it or not is significantly higher than many of the shots which are around 30%). Seemed like a no-brainer, right? Well, there was, of course, a catch.
Tysabri has been known to cause PML (progressive multifocal leukoencephalopathy) – which usually leads to death or severe disability. I should point out that the likelihood of getting it is pretty rare but there have been roughly 350 scenarios reported worldwide. Your risk of getting PML is increased if you have all of the 3 risk factors below:
- You’ve been on Tysabri for longer than 2 years
- You’re a carrier for the JCV virus (this is a very common virus that’s typically dormant but can become activated and move to your brain)
- You’ve received other medicines in the past that have weakened your immune system
What does all of this mean? Tysabri is an effective drug but if you have the JCV virus, the longest time you should be on this drug is 2 years. I’ve personally talked to a lot of people, however, who have opted to stay on it longer because it has helped them so much that they’re willing to risk getting PML just to have a normal day-to-day life.
Personally, this drug was a no brainer for me – with or without testing positive for the JCV virus. I want to be on a drug that allows me the greatest chance of living my life to the fullest. The whole idea behind getting on a medicine is to try to minimize any new lesions (you cannot do anything about the ones you currently have) and this drug has the highest probability of doing that. As a bonus, it’s administered only once every 28 days via IV infusion so it will not impact my day-to-day lifestyle.
I started Tysabri in June and so far, I haven’t had any negative reactions to it. It tends to take a few sessions for any side effects to settle in so only time will tell how my body will react but I’m feeling cautiously optimistic. I’ll be back for another treatment soon, so stay tuned.
MS peeps, are you on a drug that has successfully controlled your disease? I’d love to learn what type of treatment works for you. Please reply in the “Comments” section.
**Please note that I am not endorsing this drug or recommending it for you. Please do not view this entry as medical advice and or the replacement for personal consultation from a licensed physician.