A Proven Treatment With A Fighting Spirit
This video is not intended to provide medical advice. This recorded event discusses the details of relapsing multiple sclerosis (MS) and TYSABRI. Watch to learn more from Dr. Kaplan, an MS specialist, and hear from a TYSABRI fighter.
Be sure to talk to your healthcare provider, who is always your primary resource when it comes to your relapsing MS and your treatment.
JULIE: Hello, and welcome to A Proven Treatment With A Fighting Spirit. I'm Julie, a multiple sclerosis sales representative with Biogen.
In this video, Dr. Kaplan, Assistant Professor of Neurology and MS specialist, will break down relapsing MS and discuss the details of TYSABRI, which is also known as natalizumab. You will also get the chance to hear from Stacy, a TYSABRI fighter.
Please know that this event was recorded from a previous virtual event and all interactive features shown in this video are disabled. If you find this video helpful, be sure to check out TYSABRI.com for more information.
Now sit back, relax, and get ready to learn more about TYSABRI. We will be covering relapsing MS, TYSABRI treatment, inspiring words, and time for questions and discussion.
You will also be hearing from me throughout the presentation for some additional background about TYSABRI.
Now it is my pleasure to introduce Dr. Tyler Kaplan, Assistant Professor of Neurology and MS specialist at Rush University Medical Center. Dr. Kaplan graduated medical school from the University of Kansas, completed his residency from the University of Utah Medical Center and a two-year neuroimmunology fellowship at Rush University Medical Center.
With that, I will now turn the presentation over to Dr. Kaplan.
DR. KAPLAN: Hi. Thank you very much, Julie. It’s lovely to be here. Um, so, just a few things to know, uh, at the beginning of tonight’s presentation. Uh, this program is being brought on by Biogen and I am being compensated for my time to share this presentation with you all today.
Um, this presentation is meant to help with having open and meaningful conversation, um, about healthcare and about MS. But it’s not, uh, meant to substitute for individual medical advice. Um, you should always discuss with your own healthcare professional any specific treatments for your case.
A closer look at relapsing MS
DR. KAPLAN: We begin our talk talking about just relapsing multiple sclerosis in general and what that entails. So, when we talk about any sort of diseases that affect the nerves, I think it’s important to have a sense of what is a healthy nerve so we can then talk about what the disease actually does.
So, ultimately this is an image of a healthy nerve. So, when we talk about, uh, how our nerves work, they work by sending electrical signals from one cell body to another. And they send those along what’s called the axon. And so the metaphor I like to often use when describing this is to think of an electrical wire, where you have your standard, um, core —like the copper wiring which the electrical signal goes down. But you also have the insulation that goes around that cord that helps those electrical signals to move more efficiently and, uh, quickly. And that, in our bodies and the nerves, is what’s called myelin. And so that is what our bodies use to help those signals transmit.
Now, what is MS? MS is an autoimmune chronic progressive disease that actually attacks the, um, the nerves itself, and is what is termed as demyelinated. So in which our own immune system attacks specifically that myelin, so the insulation around our nerves. And when that—it is similar to when you strip a wire, uh, and therefore electrical signals are not able to travel down that as effectively. And then when you expose that wire, or the axon in this case, that can also lead to further damage to the nerve axons itself.
So, with that in mind, it’s important to remember that even if you’re not actually having any physical symptoms, your disease can still be progressing and you can be continuing to have relapses, even before you have any sort of symptoms.
Therefore, it is very, very important to start on treatment as early as possible for multiple sclerosis, regardless of whether you have significant disability and, or not, or frequent relapses or not. Um, and therefore, um, the—it’s important to know what our options are.
Learn more about TYSABRI
DR. KAPLAN: And today, we are specifically going to be taking a closer look at our medication TYSABRI, or natalizumab.
So, TYSABRI is a medication that has been approved to treat relapsing forms of multiple sclerosis. This is kind of a newer term. Um, we used to have these more subsets that included things like clinically-isolated syndrome, relapsing-remitting disease, and active secondary progressive disease. But now we largely kinda lump all that into one category that we call relapsing multiple sclerosis.
Um, TYSABRI is safe and effective for people 18 and older, but it has not been approved for children.
JULIE: Great points, Dr. Kaplan. I wanted to add that TYSABRI increases your risk of getting a rare brain infection—called progressive multifocal leukoencephalopathy (PML)—that usually leads to death or severe disability. You can only get PML if you have been infected with the John Cunningham (JC) Virus. When you are making the decision to start or stay on a medication, you and your healthcare team should discuss whether the expected benefit is enough to outweigh this risk.
JULIE: Let’s hear why Rosario chose to fight with TYSABRI.
ROSARIO: Hi. I’m Rosario and I’ve been treating with TYSABRI for 8 years. After my diagnosis, my doctor really helped me through the process of choosing the medication and explaining every option out there.
When I found out about TYSABRI, it really appealed to me because it was literally just 1 hour once a month. As a photographer and artist, I’m constantly on the go. So TYSABRI has really met my treatment goals in so many ways. And it really made a difference.
DR. KAPLAN: So, now we get to our first, uh, question of the night. So, uh, for a poll for the audience here, you can take a guess of how many years of clinical trial and real-world experience we have when it comes to treating relapsing multiple sclerosis with TYSABRI. So, we’ll take a moment to, uh, bring up the poll and people can say if they think it’s 5 years, 10 years, or 15 years.
Okay. So, it looks like everybody, uh, said 15 years. And that would be correct. Yes. So, we have over 15 years of clinical trial and real-world experience when it comes to treating relapsing MS.
So then moving onto our second question, how many patients globally have been treated with TYSABRI? So, another poll question here for the audience. If you think it’s 100,000, 150,000, or 250,000. All right, then, so it looked like everybody kinda caught on and read it’s, uh, 250,000. As of March of 2022. Over 250,000 patients have, uh, been treated with TYSABRI.
And then our third question of the night. So, what percentage of people taking TYSABRI rate their experience as them being extremely satisfied? So, is it 52, 66, or 84 percent?
So, most of you were, uh, on-target there. Yes. So 84 percent of people taking TYSABRI rate their experience as being extremely satisfied.
JULIE: In addition, this survey asked people to rate their TYSABRI experience based on various factors such as efficacy, safety, dosing, cost, quality of life, support services, and more.
Discover why Gene made the powerful choice to treat with TYSABRI.
GENE: I’m Gene and I’ve been treating with TYSABRI for over 10 years. When the provider and I started discussing TYSABRI, I was very clear that that would be my next therapy of choice. And by that point, I had attended many patient programs and read up.
The goal, like any other MS therapy, is to slow the disease progression to reduce MRI lesions and disease activity. I am currently living well with MS and being able continue to do the things I love to do, whether that’s family life, personal life, or work.
DR. KAPLAN: All right. So, uh, when it comes to TYSABRI, we’ll start off by showing what the initial clinical trial data showed. Um, so, in the initial clinical trials, they looked at 942 patients over the course of 2 years, um, with about a 2:1 ratio. Uh, so 627 patients were treated with the medication versus 315 patients were treated with a placebo medication.
And what they found over those two years is that 83 percent of the people taking TYSABRI had no progression of their disability, um, compared to 71 percent taking the placebo, and that there was a 67 percent, so two- about two-thirds reduction in the average number of relapses per year in the people taking TYSABRI, compared to those of the placebo.
Now, the most common side effects that were reported over those two years were infections, such as urinary tract infections and pneumonia, allergic reactions, depression, including suicidal thoughts or attempts, and gallstones. And certainly- and if you were to experience any of these side effects, uh, you would need- want to contact your healthcare provider.
Now, not only do we have the initial clinical trial data over those 2 years, but we also have data that shows that TYSABRI is effective over 10 years. And that is the TYSABRI Observational Program. Um, so this was an interim analysis that was looking at the long-term safety and efficacy of TYSABRI and was looking at it in a much larger number of patients than were in the initial clinical trials.
JULIE: I wanted to add more information about this study. There were more than 6000 people taking TYSABRI in this study. These 6148 patients were at different points in their journey and took TYSABRI for various lengths of time. For example, 3210 people discontinued TYSABRI, and the remaining may have not yet reached the end of the 10-year period. Patients had 3 or fewer TYSABRI infusions before being enrolled in the study, and data were collected from patients at regular doctor visits every 6 months. Evaluations were done every 24 weeks to determine whether the patient's level of disability changed. For those whose disability progressed, their disability progression would then be confirmed at their next evaluation 24 weeks later.
DR. KAPLAN: And, now, they were not all taking it for the full time, but- so there were some limitations. Also, this is not as reliable as a controlled clinical trial, since there was no placebo group. And many of these patients, uh, were participating in countries outside of the United States, so that it may not fully apply to, uh, every case in the United States.
JULIE: In any study, there are limitations. Here are a few things to make note of about the data: The findings are not included in the full Prescribing Information for TYSABRI. All observed patients were treated with TYSABRI, so there was no comparison versus placebo.
DR. KAPLAN: Now, when they look at this more long-term observational study, they found that on average people had an 88 percent reduction in the number of relapses in the first year. So, you take the number of average relapses people had before starting TYSABRI, you looked at the average in that group over that first year, and so 88 percent reduction.
And in general, this, this rate of reduction was consistent over the course of those 10 years.
Um, what they also found is over the course of that 10-year study, 72 percent of those patients had no disability progression. And this overall was consistent with previous studies of TYSABRI, again showing, um, efficacy over 10 years and that they showed no new safety concerns, um, compared to what was originally described in the clinical trial that we described earlier.
Something else that’s very, uh, helpful or- to know, or good to know about TYSABRI, is that it works quite quickly. Um, and in, uh, separate analysis they showed that TYSABRI significantly reduced the risk of disease activities in just 2 months in as few as 2 total infusions.
JULIE: I would like to give some more background about this study. After the main clinical study, an additional analysis was done to understand how long it takes for TYSABRI to start working. Since this analysis was not planned as part of the clinical trials, the data may not be as reliable. But, when researchers looked at people’s average number of relapses per year, this is what they found: In just 2 months and as few as 2 infusions, TYSABRI reduced the risk of disease activity.
DR. KAPLAN: Now, when it comes to safety consideration, there are a few potential risks that we have to consider, the most important of which is that TYSABRI can, uh, increase your risk of developing a very serious but rare infection of the brain called PML. Now, everybody’s risk of developing PML is different, so you would have to have this in- further conversation of the risk with your team.
Now, an important point to be aware of is that you can only develop PML if you have what’s called the John Cunningham Virus. So we’re gonna get into a little bit more detail about that. What is this John Cunningham or JC virus, and what is PML, or progressive multifocal leukoencephalopathy.
Now, it’s important to note that when it comes to PML, there is no known or FDA-approved treatment prevention or cure for PML. And that when it does occur, it’s generally in people with weakened immune systems in one way or another. And it generally does result in death or severe disability.
Now, though, there are several factors that come into play when it comes to the risk of developing PML. Specifically, you have to have antibodies to the JC Virus. So if you don’t have that virus, if you don’t have positive antibodies, then you can’t develop PML. Um, another very important risk is if you have a prior history of being treated with any medications that suppress your immune system, um, such as chemotherapies or medications for organ transplant, uh, prevention.
Now, an- another important factor is how long that you have been on TYSABRI. So, your risk of getting PML is greatest if you do fit into all three of these risk factors, but there are other factors that we have to consider. But again, an important point that e- if you test positive for the JC Virus, that does not guarantee that you will go on to develop PML. And as we go on further in the presentation, the risk is actually less than 1 percent, even if you are JC Virus-positive.
Now, Biogen does provide free testing, uh, to test for the antibodies of the JC Virus. And this is something that would need to be tested periodically while on the TYSABRI, so both before and while taking the medication.
Now, we can never 100 percent predict who will and who will not get PML, but we do have 8 years of reported data in approximately 100,000 patients in the United States who are taking TYSABRI. That helps us understand the PML risk. And, you know, the big takeaway from this is that even if you are JC Virus-positive, your risk of PML is always less than 1 percent.
Now, what they found in, uh, kinda stratifying this is that if you’re JCV-negative, that your PML risk is less than 1 in 10,000, um, out to 8 years. But even in the people that were JCV-positive, the risk was actually less than 0.7 percent, uh, uh, up to 8 years.
Which this leads to a, a question we get very often, is how long can I stay on TYSABRI? And ultimately, there’s no hard number as far as how- a limit of how long you can be on the TYSABRI. And in fact, more than 40 percent of those on TYSABRI have been taking it for more than 5 years.
Now, when it comes to the possible side effects to be aware of, the more common side effects are more common issues. Things like headaches, feeling tired, urinary tract infections, joint pain, um, lung infections.
Um, now, there are some more serious side effects, including herpes infections, so specifically herpes zoster or the shingles virus, the- as well as herpes encephalitis, which is a herpes infection affecting the lining of the brain, uh, or the brain itself as well. And, uh, there’s also a potential risk for liver damage, severe allergic reactions, um, increased risk of infections, and risk for low platelet counts. So those are some of the more serious side effects to be aware of.
JULIE: Find out why TYSABRI gives Nicole peace of mind.
NICOLE: The best thing about TYSABRI, it’s catered to you and your time. I get my infusion first thing in the morning, um, the earlier the better. By the time we get it up and flowing, it flows for an hour, and then you have your, your wait time afterwards to make sure that there’s no side effects and that there’s no problems.
I’m so much on the go that it’s nice to just be able to sit and rest and just have some down time for a little bit. If I need to take a nap, I can do that. If I need to talk to my mom on the phone, I can do that too. It’s my time. It’s me time. And I’m not sad about it. I’m not apologetic about it. And I love the fact too that they ask you at every appointment, how are you feeling? Is it working for you? Are you having any side effects? Are you having any problems? Even the nurse will call you every couple of months and check in and see how you’re feeling. It’s not just a, a physical feeling. It’s the peace of mind that I get knowing that I’m taken care of.
I love TYSABRI.
DR. KAPLAN: Moving on, we’ll be talking about just the convenience of the once a month dosing of the medication. So, now, TYSABRI is an IV medication that is given once a month through a 1-hour infusion. Um, the actual infusion does take only 1 hour. Um, but we do recommend, at least for the first year or the first 12 infusions, that you stay at the infusion center for an additional hour for routine observation. Um, after the 12th infusion, you and your healthcare provider can then decide whether you need to continue that observation period. And if you feel comfortable- they both feel comfortable, you could just, uh, leave after the initial infusion.
JULIE: Also, it’s important to tell your healthcare provider right away if you have any symptoms of serious allergic reactions such as hives, itching, trouble breathing, chest pain, dizziness, wheezing, chills, rash, nausea, flushing of skin, or low blood pressure.
DR. KAPLAN: Now, when it comes to the infusion itself, we recommend that patients do get plenty of rest beforehand and drink plenty of water before arriving for treatment. Um, we also recommend bringing something to do, since, uh, once you’re getting the infusion, there’s not really too much you need to do. Uh, you can read, listen to music, play games, do work, whatever you like. Um, you know, it’s also an opportunity to get to know other people, um, uh, nurses as well, who are working with TYSABRI or receiving TYSABRI. And then the nice thing about the medication is then you can just get back to your day afterwards. You don’t have to, uh, take any additional time off.
Um, now, uh, one thing that we do have that Biogen provides is the TOUCH Prescribing Program. Um, this is, uh, a program that you have to be enrolled in in order to receive TYSABRI and it, uh, helps to regulate and be sure that you’re receiving the medication at authorized centers with- staffed by nurses that are well-acquainted with giving the medication and know how to manage the medication. Um, the nurses will ensure that you are well aware of the medication itself as well. Now, a question we often get is how does TYSABRI work? Because it’s actually a pretty unique mechanism.
Now, something that we brought up earlier, just to remind you, is that we talked about MS being an autoimmune disease, meaning specifically your immune system is attacking, again, that myelin on the nerves.
Now, in order for those cells to get to your brain and into your nerves to attack your nerves, they have to cross what’s called the blood-brain barrier. So that’s an extra layer of protection in between your blood vessels and your nervous system.
So, generally, your, your B and your T cells, which are called lymphocytes, in order for them to cross that blood-brain barrier, they use specific proteins to be able to, uh, to latch onto and then cross over. The metaphor I like to use, um, that I think patients can understand, is imagine if you’re floating down a really fast-moving river and you’re on a floatie. You know, if you’re go- moving along pretty quickly, it can be hard to get out of the river. So something you may do is reach out and grab a tree branch to then yank yourself out of the river. So, that’s kinda how your cells work in order to cross that blood-brain barrier. But then imagine that you cover your hands with big, heavy oven mitts and then you’re trying to grab that tree branch. It’s a lot harder. So that’s essentially what’s happening, um, with TYSABRI is TYSABRI is blocking those proteins that your blood cells are using to try to get out.
And so that’s the—our general understanding of the mechanism. And the beauty of that is while it’s stopping those cells from getting across the blood-brain barrier and attacking your nerves, it’s not destroying those cells. We’re preventing the, the traffic or the moving of the blood cells, but we’re not destroying the immune system cells.
Now, so just a summary slide here to kinda go over what we’ve been talking about. So TYSABRI has been shown to reduce relapses and disability over 10 years, and then it can start working in as little as 2 months. Um, we have more than 15 years of real-world and clinical experience that support this data and the continued efficacy of the medication. A large percentage, 84 percent of all patients taking TYSABRI report being extremely satisfied. And that 40 percent of patients who have tried TYSABRI have remained on it for at least 5 years. Um, and that it’s- this is a medication that is given once a month and that, um, there is that increased risk of developing PML, but only if you’re positive for that JC Virus. So if you ha- so if you do not have the JC Virus, you cannot get PML. And then on the other side of it, just because you have the JC Virus doesn’t mean you will develop PML. Like we said, it’s still less than 1 percent chance of that occurring.
Now, this is just reiterating some of what we’ve already talked about, um, as so—uh, as far as the risk of PML. So I won’t repeat that. Um, again, this is, uh, repeating what we already talked about.
One note is that, um, while on TYSABRI, um, if you are JCV-positive, you should be monitored for symptoms of PML. And even if you stop TYSABRI because of concern of a risk for PML, you should still be closely monitored for at least 6 months afterward.
So, the main symptoms to be aware of in that case are issues with your thinking, eyesight, balance, strength, or developing weakness on one side of your body.
Um, now, it’s important to tell your, uh, physician before starting TYSABRI if you have any medical conditions that are already weakening your immune system, such as HIV or AIDS, leukemia, lymphoma, or organ transplant. Uh, it’s also very important to discuss if you are pregnant or plan to become pregnant in the near future. Um, and also if you are breastfeeding or plan to breastfeed, as TYSABRI can pass into the breast milk. But it is not sh—known to be—it is not known if that is actually harmful for the baby. But it’s something, um, that you can talk to your doctor about, whether it’s best in that case.
JULIE: I would like to add that there are also possible serious side effects with TYSABRI. If you have any of the following symptoms, call your doctor right away.
The first is herpes infections. There is an increased risk of infection of the brain or the covering of your brain and spinal cord (encephalitis or meningitis) caused by herpes viruses that may lead to death. Symptoms include sudden fever, severe headache, or confusion. Infection of the eye caused by herpes viruses leading to blindness in some patients has occurred. Call your doctor if you have changes in vision, redness, or eye pain.
The next possible side effect is liver damage. Symptoms include yellowing of the skin and eyes (jaundice), unusual darkening of the urine, nausea, feeling tired or weak, or vomiting.
Allergic reactions, such as hives, itching, trouble breathing, chest pain, dizziness, wheezing, chills, rash, nausea, flushing of the skin, low blood pressure, including serious allergic reactions (anaphylaxis) may occur. Serious allergic reactions usually happen within 2 hours of the start of the infusion, but they can happen any time after receiving TYSABRI.
TYSABRI may also cause a weakened immune system and may increase your risk of getting an unusual or serious infection.
Lastly, TYSABRI may cause the number of platelets in your blood to be reduced. Symptoms include easy bruising, small, scattered spots on your skin that are red, pink, or purple, heavier menstrual periods than are normal, bleeding from your gums or nose that is new or takes longer than usual to stop, or bleeding from a cut that is hard to stop.
DR. KAPLAN: And then we already talked about potential risk of decrease in platelet counts, um but as we also talked about, the most common side effects are listed here, and just reiterating that.
So getting into some of the more frequently asked questions, something that, uh, people may ask is that, is TYSABRI medication that people with mild disability can be on, or do they have to have more severe disease? And what we want to point out is that in the clinical trial, TYSABRI was used largely by people with little or no disability, as well as people with more severe disability. Um, so there’s no requirement as far as how severe your symptoms have to be in, in order for you to be on TYSABRI. Um, is TYSABRI considered an immunosuppressant? Really, it’s more accurate, as we described earlier, to call it an immunomodulator. So it does affect how your blood cells, your white blood cells travel, but it doesn’t destroy those immune cells.
Another question is, how do I know if TYSABRI is an option for me? Um, so something we want to point out is that you don’t have to have been on other medications to start on TYSABRI. Many patients start on it as their first medication. In fact, about 1 in 3 people who start TYSABRI have never been on any other disease-modifying therapy.
So, it’s always an option, whether you have been on other medications in the past, or if you have just recently been diagnosed and are starting a medication for the first time.
And something we did—um, uh, talked a little bit about before is, is there a specific amount of time before I have to stop TYSABRI? As I said before, there is no set time limit, um, and more than 40 percent of patients have been on it for more than 5 years. Now, you do have to consider the, the potential that the PML risk can increase the longer that you are on TYSABRI. So, again, if you are positive for that JC Virus, it’s something that you will need to discuss with your provider.
And I think we’ve answered this a couple times, but just because you have the JC Virus antibody does not mean that you have to stop taking TYSABRI. Um, you know, there are specific risk factors that we do, uh, consider when making these decisions, and that’s something that you can talk about with your provider. But you, you do not definitively every time have to stop if you are—even if you are positive. And I have many patients that are positive and stay on TYSABRI. It is not an, uh, an uncommon occurrence.
So, yeah, then just to finish up, we’re just going to discuss, um, some of the Biogen Support Services.
JULIE: Thank you, Dr. Kaplan. If you are living with relapsing MS, know that you’re not alone. Biogen Support Services is here to help along the way. As soon as you’re prescribed TYSABRI, Biogen Support Services can provide you with financial, insurance, and treatment education and support. But remember, your healthcare team is always your best source of information.
One of the services offered by Biogen is insurance and financial assistance support. At Biogen, our goal is for everyone to get the support they need so they can afford their treatment. We can work with you to understand your insurance coverage and medication costs and explore financial assistance options for your TYSABRI treatment. We will communicate with you and your insurance company to explain coverage options and costs, including guiding you through the prior authorization process. We can explain complicated insurance information and changes.
We can also help identify potential options for financial assistance with your relapsing MS medication. If you are commercially insured and eligible, the Biogen Copay Program, or Administration Copay Assistance Program, could lower your medication costs.
If you are government-insured, we can check to see if you are eligible for alternative government programs. If you are uninsured or underinsured, we can research other possible financial assistance available to you.
Biogen offers additional support services, such as Support Coordinators, who provide one-on-one phone support and are ready to help you throughout treatment, including helping you find an alternate infusion site, should you need one. They understand the challenges you may be facing and are ready to support you throughout your treatment. They’re available to answer questions or provide information related to your relapsing MS and TYSABRI.
If you have any questions after this event, you can contact Biogen Support Services at 1-800-456-2255.
At this point, we’ve explored the benefits, risks, and real-world experience of TYSABRI. Clearly, there is a lot to think about. Discussing your condition, concerns and treatment goals will allow you to be confident in your treatment choice, whether that’s TYSABRI or something else.
To get the most out of your treatment, it’s important for you and your healthcare team to be on the same page. Remember that your team includes not only your doctor, but all healthcare professionals who help you manage your relapsing MS.
While there is no cure for relapsing MS, effective treatment is essential. And choosing the right treatment starts with open, honest conversations with your healthcare team. Some topics you may want to discuss include satisfaction with your current treatment, what might be a good first relapsing MS treatment, whether or not you have had a relapse in the past year, disease progression, any lesion activity shown on MRI, benefits versus risks of TYSABRI, how to get started on TYSABRI, and infusion locations.
Words from a fellow fighter
JULIE: I would now like to introduce someone who can share with us their personal experience with TYSABRI. It is my pleasure to welcome Stacy. Stacy is currently taking TYSABRI and is here to share her story about living with relapsing MS.
STACY: Good evening. And thank you for coming. Before I begin, I would like to thank Biogen for sponsoring this program. Also, I am also being compensated for my participation in this evening’s event. Now that we have that out of the way, I’d like to tell you about my choice to take TYSABRI, also known as natalizumab, and how it played a part in my journey with relapsing MS.
As you’ve been told, my name is Stacy. I don’t run marathons. I’m not a weightlifter or climb mountains. There is not really anything extraordinary about me. I’m a mother and a wife, and I’m just living my life. And for the past 20-plus years, it’s been a life lived with relapsing multiple sclerosis.
You know, that’s a long time. And when I think back to when I was first diagnosed, I think about how different my life was then compared to now. And I realize I’ve made a lot of choices during these 20-plus years. And well, the older I get, the more I realize that life is all about choices.
All of you had a choice to make tonight. You could dial in or not. For some, I’m sure that it was a relatively easy one. But others, maybe not so much, because these days, free time is precious.
But for the most part, my claim to fame is that I am a warrior, an MS warrior. And since all of you chose to be here tonight, well, that tells me that you’re warriors like myself, trying to fight against this disease. In my opinion, living with relapsing MS is a battle. And being a warrior is as significant as being a weightlifter or professional mountain climber. So, every day of my life, I choose to fight against it. And whether you’ve been diagnosed with it, or you care for someone who has, we’re all living with it.
Before my diagnosis, I was a system analyst for a large healthcare facility. I burned the candle at both ends, on-call 24 hours, 7 days a week, on top of making dinners, taking my son to whatever sport he was involved in, keeping the house, and just trying to keep everything going. It was chaotic and crazy, but I would not have changed it for the world.
Well, then one day I was dusting and I got light-headed, and my legs felt like I had pins and needles running up and down them. A few days later, I couldn’t feel my forehead. So my doctor got me to the ER for a brain MRI. And that doctor said, “I don’t know how to tell you this, my job here is done and yours is just starting. You have MS.”
I really can’t describe what I was feeling when I heard that. You have MS. I didn’t even know what MS was. Was this something that was going to kill me? Is there a treatment? What do I do now? The only words I could get to come out of my mouth were, “I think I need to use a phone and call my husband.”
It’s hard to believe that happened 20-plus years ago, and I remember it like it was yesterday. I say it’s hard to believe because today, I can barely remember yesterday. After hearing those words, suddenly that person who could handle everything that came her way was clueless, insecure, and afraid.
This disease was making all my choices for me. And I was letting it. Instead of me being in control in my work and my chaotic life, I found a person I didn’t recognize, one who was anxious, fatigued all the time, and reluctant to try even the simplest of tasks—180-degree difference from the person I was until that day. MS took control over my emotions, my drive, and my joy. And the worst part was I was letting it. But with time comes wisdom, and I figured out a few things in these past years. I figured out I have choices to make. I could continue down this path, or I could change it. I could let this disease define me, or I could try to take control.
You know, when I was little, I throw a fit about something and my mom would always say [SNAPS FINGERS] “Well, you can just get glad in the same pants you got made in, missy.” [LAUGHS] So that’s what I decided I’d have to do. I would have to find a way to get glad again. I wanted to take back control over my life.
I found that by being informed about my disease and my treatment options, I was empowering myself. So I researched my illness and the available treatments. I found I had choices I hadn’t known were available.
So, this time, armed with knowledge and a renewed confidence, I spoke with my doctor and started on TYSABRI, also known as natalizumab. I learned that it was an infusion once every 28 days. Compared to everything I had been through up to this point with my relapsing MS, well, that would be manageable. I could do that.
By making this one choice with my doctor and advocating for myself, I started to find that person who wasn’t afraid of anything and would openly accept all challenges. Like I said earlier, life is all about choices. And really, up to this point in my life, all my choices seemed pretty easy, uneventful even. But little did I know that I was about to get a phone call that would test me, and I would have to make a choice that would impact not only me, but my family, and they are my life. This choice would be a defining one in my journey with relapsing MS.
After being enrolled in the test program, a patient taking TYSABRI, there are a few rules that you must follow to continue treatment. One is regular visits with my neurologist. Well, my first visit was after I had been taking TYSABRI for 3 months. That brain MRI showed no new lesions, and I was ecstatic. But like everything else with this unpredictable disease, that wouldn’t last.
That phone call I mentioned earlier, well, that was my doctor calling to tell me that the blood work I had taken on that last visit showed I carried the JCV antibodies and that my risk for PML was higher than those who are JCV antibody-negative, and that we should look into another therapy. And as my husband and I listened to the doctor on our speaker phone, my heart sank again, because I was back to that scared person who didn’t know what to do next.
I had tried all the other therapies that were available at the time and they had worked well for me. I didn’t wanna change. TYSABRI had been working well for me, and now they were gonna take it away. I had just started to find hope about living with this chronic condition. I was mad. But I knew my illness wasn’t going away, so again, I had a choice to make.
But this one was serious. PML is a serious brain infection and not something to be taken lightly. I told my doctor I would pray about it, I would talk to my husband, and I’d be in touch. This was a choice I thought I’d better let my hubby help me make. You see, even though the choice was mine to make, the consequences would affect us both. And like all good husbands, his first response was, “Well, whatever you wanna do.” And I thought, I mean, really? Come on. We’re not talking about what’s for dinner.
And his second response was much more helpful. Apparently, he had thought about what I had been through before starting TYSABRI. And so this time he said, “Well, Stacy if you were in quicksand and someone threw you a line, would you check to see if it were a snake or would you grab hold?” Now, that’s more like it.
I talked to my doctor, and we decided to continue on TYSABRI. My disease had been stable with TYSABRI. And while the proof was evident from my MRIs, I saw hope in my husband’s eyes. I chose to stay on TYSABRI then and I’ve been on it ever since.
And you know, today things are different. There are many more choices for therapy. I can only tell you about my experiences and my choices. I can tell you that I continue to choose TYSABRI because it works for me. For me, it comes down to this. I have two choices. One, I can let multiple sclerosis change who I am, redefining everything about me, and continuing to make my choices for me. Or two, empower myself with knowledge about my disease and my treatment options. So I choose two.
Choices in life aren’t always easy. But I choose not to be at the mercy of MS. I choose not to live my life constantly reminded that I’m living with a disease that has no cure. And I choose to be part of making decisions about my treatment and taking back power over my life.
So, yes, I live with multiple sclerosis. But that person who let this disease control who she was 20-plus years ago, she’s gone. Today, like every day, I choose to fight this battle and not let MS define me. Thank you.
JULIE: So at this point, I think we will conclude tonight’s program, A Proven Treatment With A Fighting Spirit. Thank you for attending, and Dr. Kaplan, thank you for your expertise.
If anyone does think of future questions, please talk to your healthcare provider or call a Biogen Support Coordinator at 1-800-456-2255. It may be helpful to add this number to your cellphone so that you always have it.
Thank you for watching. Be sure to check out TYSABRI.com for more information.