Road to Tysabri
July 8, 2016 13 CommentsCategory: MS
Tags: Dr. Dusan Stefoski, MS, MS drugs, Road to Tysabri, Tysbari, autoimmune disease, medicinal options, multiple sclerosis
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.
July 8, 2016 at 6:56 pm
I’m sure this will be very helpful to people wondering in the quest for the right medication
July 8, 2016 at 6:58 pm
I’m sure this will be very helpful to people trying to find their best medication.
July 10, 2016 at 5:59 pm
I was 30 when I was diagnosed this past December also with optic neuritis but in my left eye… My vision was 20/600 and all I had was peripheral vision. It looked like a cloud in front of my eye. After the 5 days of steroids I could see and 2 weeks later my vision was 20/20. The only thing off right now is the color… It still looks a little fuzzy and washed out but I can only tell if I cover my good eye. On my mri I had 8 lesions and 1 active but the doctor said that’s not what was causing the on. Otherwise I have had no other symtoms. I will be getting my 5th tysabri infusion next week… On the 4th one 10 minutes in the meds just hit me like a ton of bricks and I felt my face get hot immediately. Now I have to take Benadryl going forward but am really waiting for ocrelizumab to come out which is supposed to be 47/ better than an interferon that’s 50 percent effective NOT compared to a placebo like tysabri…regardless I think we will be fine my 2 uncles are paralyzed from this because they had no medicines or mris at the time… So happy you are writing this blog 🙂
July 10, 2016 at 8:42 pm
Hi there! Thanks for reading. I’m happy to hear you’re symptom free and Tysabri is working for you. I hope I don’t run into any issues.. Fingers crossed! Yes, I actually have a post coming up about the new drug coming out it. It’s supposed to be the best so fingers crossed! Best of luck to you moving forward and hope you continue to follow along 🙂
July 12, 2016 at 3:54 pm
I started on rebif and the side effects were horrible!!! I now have been on tecfidera and have been for about a year. The flushing only happens every once and a while but other than that it’s great!!!! Love your blog! I’m good friends with Your cousin, Heather!!
July 12, 2016 at 4:07 pm
Thanks, Sue! So happy to have you following along! I heard that about rebif – happy to know that you found something that works for you though! Tecfidera seems like a great option. Good luck with it and let me know how it continues to go for you!
July 25, 2016 at 10:34 am
How long does your doctor think you’ve had it for? On my first mri while I was being diagnosed I had 8 very small brain lesions, hence why I have been asymtomatic. One of them was new but was not causing me symptoms either. All were just scars and none on my spinal cord. I am 31 so i wonder just how long it took to get all those lesions?
July 25, 2016 at 10:39 am
He doesn’t know for sure how long I’ve had it. Years he assumes. I have also been asymptomatic except for my vision for the most part. Only numbness and tingling. I also just have them in my brain – not spine. Do you feel okay on a day to day with Tysabri?
July 28, 2016 at 8:11 am
They thought I MAY have MS 13 years ago when I got optic neuritis. After seeing many neurologists (even at the Mayo Clinic) and moving across country I decided I did not have MS because I felt fine. Last year my general practitioner suggested I get an MRI to be on the safe side. Low and behold more lesions and I do have MS. I have been on Copaxone for almost a year. I am not a fan of injecting myself and am starting to research other options. I wonder if an MS specialist might be key in doing so instead of a general neurologist. I have lived with tiredness and muscle aches for a while and thought it was just part of getting older. I always feel like I ran a marathon when in fact I have never done so. People think I am healthy because I workout and I LOOK healthy. I am hoping it stays that way. I may have kept my MS in place all of these years by not eating dairy or red meat for other reasons. Stumbled across your blog and it was helpful to see someone who may be in the same shoes. I want to live strong too. Still trying to navigate this and find out how to handle everything (telling employment, people, etc) caring for myself.
July 28, 2016 at 9:04 am
Hi there, I’m so happy you found my blog! MS is certainly scary but it helps having a community to support you, and to know that others are in your shoes too. Part of the reason I feel confident with my condition is because I have a doctor I really trust – it’s so critical to feel like you’re in good hands. I encourage you to find someone you’re comfortable with that can help you along this journey. It also helps to find others with MS that can be a resource too. I just started a new series “Faces of MS” where other people with MS will share their experiences and tips for success so hopefully everyone can benefit. I know eating right and medication work for me but I know it’s different for every person.. maybe some of their suggestions will help you! I’m happy to be a resource for you too – I haven’t had it that long either but I know how scary it is at the beginning and will do what I can to help. I’m available at wellandstrongwithMS@gmail.. make sure you subscribe to the blog too 🙂 Have a good day!
July 26, 2017 at 1:27 pm
I am 48 and just found out a month ago that I have MS. Most people notice their vision, but I have no lesions on my brain just one on my spine that was causing these crazy spells that they thought I was having focal seizures. The MRI and spinal fluid test confirmed MS. The good news is I’m older and it seems mild now – but they still recommend that treatment. Going to Barnes Hospital in September for another opinion for treatment. I love your website and I needed some encouragement – it’s been a rough 3 months.
August 2, 2017 at 7:33 pm
Alicia. So happy to have you heard and that you found my blog. I hope you find encouragement through the “Faces of MS” section and from hearing from others on they live fully with the disease. I’m sure you’ll be another success story too but understand first hand how difficult it can be at the beginning. If you need anything, just reach out. Happy to help and support however I can