9 minute read | October 12, 2020
Mayzent by Novartis pharmacy is a prescription medicine used to treat all levels of Multiple Sclerosis, including relapsing-remitting (RRMS) and active secondary progressive MS (SPMS) in adults. It was approved by the FDA in 2019, so it’s a relatively new drug on the market, and is the first and only treatment specifically approved for patients with active SPMS in over 15 years. I have adult-onset SPMS now, and my doc explained I need something a bit stronger than all the other treatments I’ve tried before.
I was doing well on the infusion therapy I was on, and I was stable; but it also kept me grounded when I wanted to fly. Once a month, I would have to sit for hours in a chair soaking up fluid through an IV; but I needed something that gave me more mobility and allowed me to travel long-term. During the 2020 Covid pandemic’s quarantine, I was feeling more stuck and unsafe than ever. I wanted to exit the high-risk of the U.S. in search for safer places to live and explore. I was already working remotely, so transitioning to a digitally nomadic lifestyle seemed at reach. At that point, I just needed my medication to support my lifestyle. I feared that my MS would be the reason I couldn’t pursue my goals.
So I made an appointment to ask my doctor what my options were, fully intending to resign to being forced to stay home to manage my health. I was already visualizing my neurologist saying, “that’s so irresponsible!” and “you should put your health first!” Instead, I was relieved to know he fully supported this direction I wanted my life to go in. He actually said, “there’s no good enough reason why you should let MS stop you”.
The truth is, I want to make this leap while I can still use my legs, while I have the energy for adventure. Mayzent is set to guide my steps to wander the world with confidence and to support me in fulfilling my dreams.
// WHY I CHOSE MAYZENT
This daily dose in tiny, tablet form is a more intense treatment that offers me all kinds of mobility; the support to move my body and the ability to travel freely. Although I enjoyed the appeal of infusions once a month, it didn’t offer me the chance to leave the U.S. long-term, to live abroad for months at a time. For me, the joy of taking Mayzent is in the possibility of taking it with me anywhere.
// HOW IT WORKS
Mayzent swoops into our CNS (central nervous system in the brain and spinal cord) to have an effect where MS is active and nerve damage is occurring. By hitching a ride onto inflammatory immune cell receptors (the bad guys), Mayzent works by trapping these cells in the lymph nodes. This minimizes the damage they do to our nerves, which leads to relapses like droopy limbs, tingly phalanges and terrible tiredness.
// GETTING STARTED
Once he gave me the go and initiated the process, my doc prescribed a few simple tests to ensure a safe transition into taking this medicine. The test also determines the most appropriate maintenance dose of Mayzent, either 1 mg or 2 mg as prescribed by your doctor. To ensure these simple tests are easy as possible, several options are provided to complete the testing: at the doctor’s office, a single in-home visit, or at any local LabCorp or Quest Diagnostics location. Because of the dangers of being out in the world right now in Covid-polluted airspace, I chose to do the exams listed below in the safety of my own home. But no matter which option you choose, Novartis may cover the cost of testing. Score!
- Identify your CYP2C9 genetic type to determine dosage
- Check your liver function
- Obtain a complete blood count
- An electrocardiogram (ECG) to see if you have any pre-existing heart conditions
- An eye exam to check your vision for a condition called macular edema
// A GUIDE ALONGSIDE
My relationship with the healthcare system has always felt shaky. Oftentimes, it’s challenging to get ahold of doctors, my calls are passed around from pharmacy to pharmacy, and WebMD is never a good resource for our sensitive condition. The most exciting feature of Mayzent is in it’s internal support system through their Alongside program.
Novartis gifts us with a Patient Coordinator, a personal guide to expertly lead the way through the journey with Mayzent. Every step of the way, from transitioning into taking the meds and throughout the process, we have support to help us stay on track with treatment. Everything from guiding us on what to expect to answering our many questions in detail and offering onboarding resources to scheduling timely delivery; our coordinator is like a concierge for our relationship with this medicine.
Our coordinator is by our side for the long term—each coordinator keeps in touch for up to 2 years. It’s up to us how we want to be contacted and how involved we’d like our coordinator to be. Vera, my own Patient Coordinator, is a saint! She’s enthusiastic about taking care of me and makes me feel like her priority. I speak to her as often as I need, and she’s easy to contact. There’s no waiting on hold or going through multiple departments to reach her; a quick call and my worries about anything dissolve in a snap.
They even set up personalized medication and appointment reminders and offer resources, like the Medisafe App. It’s THEE best. Yes, you read right: personalized reminders. The Medisafe app is easily available for FREE on Google Play and the App Store. Setup of the app is super easy and requires little effort. You set your daily notification for whatever time you prefer to receive your reminder to take that sweet little pill. Every night at 10 p.m., I receive a necessary nudge that features a funny sound clip of a shaking pill bottle. It makes me giggle every time; and honestly, with my brain fog, it’s sooo easy to forget. I’m grateful for this support.
You can also get in touch with the Alongside support program anytime, 24 hours a day, 7 days a week, by calling 1-877-MAYZENT (1-877-629-9368). There is so much value in this kind of security.
// AFFORDING IT
Insurance can be confusing and frustrating, especially when financial pressures are involved. That’s why our Patient Coordinator contacts our insurance provider for us to determine what kind of coverage is offered for Mayzent. They also look into what other financial benefits we’re eligible for, including a $0 co-pay.
With commercial insurance, we’re eligible to pay ZERO DOLLARS for this medication. That means we’re responsible to pay zip, zilch, nada, not one cent for this expensive medication that retails at $7,689 monthly. I know, it’s shockingly expensive. How is anyone supposed to afford 30 days-worth of those little pink pills? Just one tiny dose is valued at about $250 each. I was in emotional tears (relief-sobbing) when I learned I wouldn’t be responsible for the costly burden of this drug.
Remember I mentioned above that long list of tests to clear before even starting treatment? Novartis also offers options to help us access and/or receive those pretests needed for onboarding. They completely cover or heavily reduce the costs of the various exams. I didn’t pay a dime for this therapy or the required pretests. They hooked. it. up.
// DELIVERY + STORAGE
There are two pharmacies you’ll work with: Homescript Pharmacy and the specialty pharmacy tied to your insurance provider; for me, it’s CVS Specialty Pharmacy. Homescript handles delivery for the titration process. Titration is the process of tapering up in dosage in order to get acclimated to this new drug in the body. Homescript creates the welcome program to safely deliver the first few days of .25 mg doses and the first month of the full, maintenance dosage (for me, 2 mg). They’ll call to schedule the best day for you because it requires special handling and is highly sensitive.
The temperature-controlled package is shipped overnight on your chosen date to ensure you’ll receive it safely. It comes in a box with another Styrofoam package inside, and that one is filled with cooling packs to keep the temperature chilled during delivery. Once the package containing the titration pack and your first 30-day supply gets in your hands, put it in the refrigerator (not the freezer) until you’re ready to pop your first pill to start titration! And in case you’re like me and have to store Mayzent tablets for more than 3 months, containers should remain unopened and stored in a refrigerator between 36°F to 46°F (2°C to 8°C) until use.
This part is important: There’s a card in the package called a TransTracker, and it’s particularly important because it gauges if your supply of medication has exceeded its temperature limit. If the dot on the indicator appears red or pink, it has been overheated. This is also true if frozen. In the case, the dot is rosy of any degree, it must be discarded and reordered. Do not refrigerate after opening.
// STARTING TREATMENT
Remember, titration is the process of tapering up in dosage in order to get acclimated to this new drug in the body. Based on the pretest of genetic type, your maintenance dose will either be 1 mg or 2 mg taken once a day. If your doctor prescribed 1 mg, then only 4 days of titration is necessary. For a 2 mg maintenance dose, titration lasts 5 days. The titration process includes low doses of Mayzent to gradually increase each day until the regularly scheduled maintenance dose is reached. If you miss 1 or more doses during the initial titration period, call your doctor and Homescript–you will need to restart the process of titration at the lowest dose and increase daily until you have finally reached your maintenance dose.
// POTENTIAL SIDE-EFFECTS
The list of side effects they must legally disclose are frightening! It’s a potential danger, sure, this is true; but these tend to be rare. Still, because you must take these pretests to ensure your safety from these potential risks, let’s go through them:
- Slow heart rate (bradycardia or bradyarrhythmia) could be a side-effect when you start taking Mayzent. It can cause your heart rate to slow down, especially after you take your first dose. That’s why the electrocardiogram (ECG) is done as a pretest to check the electrical activity of your heart. This is also why consistency in the initial updosing period is crucial; if you miss 1 or more doses of Mayzent, you need to restart titration.
- Infections are also a threat as Mayzent can increase the risk of serious infections that can be life-threatening. Mayzent’s function is to lower the number of white blood cells (lymphocytes) in your blood. This will usually go back to normal within 3 to 4 weeks of stopping treatment. Your doctor should review a recent blood test of your white blood cells before you start taking it. It’s one of the pretests listed above. If you start to feel any symptoms like fever, nausea, chills, vomiting, sensitivity to light, nausea, and confusion, these may be symptoms of meningitis, an infection of the lining around your brain and spine. Call your doctor right away if you have any of these symptoms of an infection during treatment and for 3 to 4 weeks after your last dose.
- Macular edema can cause some of the same vision symptoms as optic neuritis, a common MS symptom, but you may not even notice any symptoms. If it happens, it usually starts in the first 1 to 4 months after you start taking Mayzent. Your doctor should test your vision before you start taking this therapy and any time you notice vision changes during treatment. Your risk of macular edema is higher if you have diabetes or have had an inflammation of your eye called uveitis. Call your doctor ASAP if you have any blurriness or shadows in the center of your vision, a blind spot in the center of your vision, sensitivity to light, or unusually colored (tinted) vision.
- Breathing problems or shortness of breath may happen.
- Swelling and narrowing of the blood vessels in your brain is also of worry. A condition called PRES (Posterior Reversible Encephalopathy Syndrome) has happened with drugs in the same class. Symptoms of PRES usually get better when you stop taking Mayzent. However, if left untreated, it may lead to a stroke. Call your doctor right away if you have any of the following symptoms: sudden severe headache, sudden confusion, sudden loss of vision or other changes in vision, or seizure.
- Severe worsening of MS after stopping Mayzent treatment could be a worry. When this drug is stopped, symptoms of MS may return and become worse compared to before or during treatment. Always talk to your doctor before you stop taking Mayzent for any reason.
So these listed symptoms above are not as common, but the following symptoms that are commonly reported and ones you may likely experience are headaches, high blood pressure (hypertension), and abnormal liver tests. These are not all of the possible side effects of Mayzent, though. You’re encouraged to report negative side effects of prescription drugs to the FDA. Please see full Prescribing Information, including Medication Guide as your legit resource.
// MY PERSONAL SYMPTOMS
My own symptoms have only been active during the titration period and on my very first full maintenance dose as I acclimated to Mayzent in my body. On my first day, I felt minor aches and some fatigue. I timed the occurrence of symptoms from the moment I swallowed the tablet: it took about 8 minutes for my body to respond. From a pain range scaling 1-10, day one was a pain level 1. Easy.
On my second day of titration, I experienced a pain level of 2 then gradually, it scaled up to 4. These were sharp aches on my left arm that lasted for a few hours, and sharp, stinging pains behind my left eye that came and went for about 5 minutes. I also had a dull headache, pain level 2.
My worst day was on day 6, my first full maintenance dose of 2 mg. I experienced a pain level of 2 then gradually, it scaled up to 6. So uncomfortable. I had a full day of flu-like pain, similar to that tired discomfort from a cold, but without the sneezing, coughing or fever. I remember a dull, stinging pain behind my right breast and fingertips. Also, I had a dull headache, and pain on my upper spine and legs. I had a few hours of light dizzy spells, so I basically stayed in bed all day watching The Office with a ReleafPack on my head. The following morning and since then, I’ve felt totally normal. I’ve been able to work out and carry on, business as usual. I’m feeling great, actually.
Please remember, all of this is just to give you a semblance of my own personal experience with Mayzent. This isn’t medical advice, and you should always consult your doctor first! If you have any questions, take it directly from them at Mayzent’s FAQ page and their Medication Guide. Just know, I’m so happy with Mayzent–it makes me feel amazing. a-mayzent.