Tysabri (Natalizumab); the one disease modifying treatment (DMT) that most new (even experienced) Multiple Sclerosis patients try to avoid. Short needles, long needles and pills; injection site reactions, muscle aches, flu like symptoms, hair loss, stomach pain, head aches, diarrhea, scarring from injections, and even your heart rate slowing down! These are a random variety of the somewhat commonly reported side effects of other DMTs (also called DMDs for disease modifying drugs). None of these side effects sound too pleasant (and if you have been on a variety of DMDs you know they really aren’t much fun at all) so why would someone choose a treatment from the “smorgasbord of misery” when you could go into an infusion center once a month, sit back in a chair, and just chill for a 1 hour infusion? One word; PML (Progressive Multifocal Leukoencephalopathy). A rare and possibly fatal brain disease that attacks the myelin in the brain often causing symptoms very similar to MS such as motor deficits/weakness of the limbs, coordination issues (ataxia), cognitive issues such as memory loss or understanding/expressing language (aphasia), and various visual symptoms (to name a few).
People remember the bad, the scary, and not the good. I am pretty sure this is a natural phenomena (that has a name I am unsure of) designed to insure our brains remember what it thinks is more import to satisfy our natural desire to survive. The thing is, this is the 21st century; rarely do we need to make snap decisions in order to survive so let’s put that initial fear aside to try to look at this rationally so that we can try to understand why an MS patient might choose to take such a risk. First of all, it’s usually not a case of “once a month? That is way more convenient than taking a pill everyday or giving myself a shot X amount of times a week!” but more often it’s for people who have tried everything else with zero positive results. Their disease is so aggressive that no matter what DMD they try, the relapses just keep coming. Month after month they are going to the hospital for a three to five day infusion of steroids and sometimes going home with a bottle of the oral stuff. Steroids don’t always feel so great or have the loveliest side effects. They may take care of your relapse but you might gain weight, have mood swings, sprout some crazy acne, or loose bone density. After a while they may even stop working all together at which point you may think to yourself “OK that’s it! Nothing is working! I am sick of this hospital and their crappy food, I’m sick of not having a life because I am always relapsing, and now these stupid steroids are not even helping!” so what’s next?
The “big guns”, that’s what! At this point you’re more than likely willing to try anything to escape the revolving door of misery! Except for bees… seriously, Google it. Anyways, TYSABRI! This is how I came to the conclusion that it was worth the risk. I had to make a simple choice; did I want to become bedridden and get comfortable with being spoon fed my meals, having someone help me shower, and loosing every other ounce of independence I had grown to know or did I want to take a small risk for the possibility of maintaining my independence, not relapsing every month and doing the things I enjoy? I wanted to live an independent life! Though the risk of death by PML is not so common anymore (with all the protocols doctors now have to take when prescribing it) I remember laying in that hospital bed (all hooked up an uncomfortable, the metallic taste of steroids making their way through my blood stream and into my tongue) and thinking to myself “I would rather live 10 more years healthy and happy than 60 more years like this”. Again, is that even a likely scenario? Probably not anymore but I was definitely thinking about the worst-case scenario as an uneducated patient. Like I said, people remember the negative; “Oh my gosh, PML, that sounds so scary, it can kill you???” but they forget the bit about it not being all that common; I think a lot of people hear PML and look at it as if you were flipping a coin and had a 50/50 chance of getting PML. I will talk about the actual odds in just a moment.
OK, so that bit about lying in a hospital bed and getting frustrated over the fact that nothing was helping anymore? That was me. So I eventually started Tysabri and Acthar (an alternative to steroids) and it turned out to be the right medication for me. With the help of some physical therapy (and much perseverance) I went from a wheelchair, to a walker, to a cane, to walking around the house, to walking across the street to get the mail, to walking around the block, to walking a mile to the store and back, to driving, and finally to flying around the world; all while NOT laying down in a hospital bed feeling miserable. Tysabri gave me a life back and I say a life instead of my life because after all I have been through I will never be the same person as I was before and as well, Tysabri did not cure my MS, it just steadied it. I still have many symptoms and MS-related issues but that’s OK with me because this is MY life and I have come to terms with it. My “new normal” as many say, has not been so bad; I have traveled around and seen things that most people never will see in their life and none of that would have happened if I didn’t take a small risk and start Tysabri. This (in addition to my horrible MS experience right before I started Tysabri) changed the way I view people, life and the world; which is why I will never be the same person again. I am lucky to be able to say that and I am lucky that I have not had a relapse in almost 2 years and counting (knock on wood) and I really have no desire to go back to life in a hospital bed which is why this next bit put me in a bit of a panic.
I recently moved from Southern California to Colorado; I needed to start a new life, leave all the bad behind, find cooler climate and go where there was opportunity. I loved my Neurologist and my health care routine; it was working so great but I felt I was growing stagnant in life. My only fear about picking up and starting from scratch was finding a new neurologist. My SoCal Neurologist was nothing short of an MS genius and I really did not want to go from that to someone who I felt (not to toot my own horn) I knew more about MS than. My SoCal Neurologist was so involved in research, new the disease inside and out, cared only about his patients and not pleasing some drug reps; he was just awesome! Well I saw my new neurologist out here… and… let’s just say my one fear came true. On top of that they did a blood test to see if I had been exposed to the JC (John Cunningham) virus or not. The JC virus is a virus that most the population carries but it does not present in any way shape or form however, if you’re on an immunosuppressant (or immunomodulator like Tysabri) it can increase your chances of developing PML. You actually can’t get PML without the JC virus but the point is, I was now JC positive. My neurologist’s office called me the day the results came in and told me I needed to come in to choose a new therapy…
The following 7 days were long and torturous as I stressed over what this test meant, how stopping Tysabri would affect me, how I just knew I should not have left the safety of my SoCal Neurologist… I emailed and called his office many times looking for answers but I knew he was busy and so at first I only got replies from his nurses who all told me to stay on Tysabri. I grew so fatigued (stress and heat are my triggers) that I could hardly function! I was going crazy! Why was this happening NOW? I started taking Nuvigil again (for energy) since coffee was no longer helping and surprisingly (as my past results with this medication were not so great) it helped with my energy levels and my ability to think! I started doing more research and in about 10 minutes I found what I couldn’t find all week! This bit of info was so relieving and confirmed everything that everyone I called had told me.
According to the Tysabri website there are three main risk factors for developing PML; whether you are JC positive or negative, the length of time you have been on Tysabri and whether or not you have had past exposure to immunosuppressants (the powerful stuff like chemo not steroids). According to the chart on their website, my chances of getting PML when I was JC negative was less than 1/1000 and with the amount of time and my lack of an immunosuppressive history my odds after becoming JC positive were now a whopping… less than 1/1000… the same. So this new clinic was freaking me out for nothing! After 24 treatments my odds will rise a little but I am barely about to go in for number 18!
Now, why did I make you read that long life story about my experience with Tysabri if only to end at a simple conclusion? Well, let me tell you. In that week between receiving the test results and seeing my neurologist, I did a lot of thinking. I was not sure what this test meant and how it would affect my life and the direction I wanted to go. For all I knew my odds were now that 50/50 so that’s all I could think about; what to do. I thought about when I was in physical rehab for 6 weeks being spoon fed, trying to get around on my own in a wheel chair, type, speak, put my socks on, and so much more. I thought about that brief period of my life that felt like a year and found myself thinking the same thing I did while I was lying in that hospital bed sucking up steroids with my arm; “I would rather live 10 more years healthy and happy than 60 more years like that”. I now knew the risk; the odds. It was up to me to decide if it was a risk worth taking. “Yes, I believe it is”. I told my new neurologist that I am not changing therapies and that I would stay on Tysabri until a new medication comes out that I can safely switch to without rebounding. The rebound effect is basically a sort of withdrawal from Tysabri that occurs about 4 months after stopping treatment and then you just tank as the disease activity skyrockets. There are different risk factors for this as well such as how well the medication did for you and the length of time you were on it but I don’t know enough about it yet so don’t quote me!
I decided against this neurologist’s wishes (but with the full support of my SoCal Neurologist) to stay on Tysabri. I weighed the pros and cons and my scale was tipping (understatement) towards Tysabri. I know this positive JC result has put an “hour glass” on my current treatment but I am going to keep moving forward with life while trying to be as healthy and happy as I can instead of stressing. I will prepare for the day I have no choice but to switch therapies at which point I can only hope something new will have been approved (I got my eye on something). Making a decision like this is so personal and relevant to each individual’s risk factors for both PML and rebounding. All I can recommend is looking into the risk factor information on the Tysabri website (for PML) to see where you are and then try to determine if your at a high risk of rebounding. After all that technical, number stuff, it’s really up to you to decide what would be the best move to make. If you are at a high risk of developing PML or rebounding are you in the best position in life to take that risk? As of now there is really no easy way off Tysabri if it has worked really well for you so it’s a bit of a catch 22. Stay on it and risk PML or get off it and risk rebounding. Again, it’s a tough decision but a decision that is too personal for anyone to make but you. Here are some factors to consider;
- Are you JC positive or negative?
- Have you used powerful immunosuppressants in the past?
- If you are already on Tysabri and trying to decide whether or not to stay on it, how long have you been on it?
(All that helps determine your “risk” of developing PML)
- If you have done really well on Tysabri your’e more likely to rebound but if you have not seen much help from the medication you probably won’t. So how well has it worked for you?
- Finally, do you truly trust your neurologist to have your well being in his/her best interest or are you kind of on your own here?
- If you need to, get a second or third opinion from different neurologist (at different clinics)
As for me, I still have a lot of learning to do about all the details on Tysabri, PML, and the rebound effect but I can tell you one thing for sure; NO ONE cares about your health more than YOU so do what YOU think is best (unless you really trust your neurologist). Just remember this; every MS patient is different. What works for one may not work for another but you won’t know if something works until you try it right? So with that in mind, remember, it’s your health; it’s your life! I urge you to become your own advocate!”