Did you know that you’ve been assigned a dedicated ONWARD Care Coordinator who will provide one-on-one support throughout your ZILBRYSQ treatment? ONWARD Care Coordinators do not provide medical advice and will refer you to your healthcare professional for any questions related to your treatment plan.
By getting to know you and understanding your unique needs and situation, your Care Coordinator will provide personalized resources and one-on-one support to you and your caregivers during your prescribed treatment, if you choose to include them.
Scroll below to find your Care Coordinator’s bio and learn a little about them.
Ann
I have a Bachelor of Science in Nursing degree. I have eight years of experience in healthcare and I’m looking forward to learning more about you through this process. On my days off, I enjoy hiking and skiing with my friends.
Atzy
I have a Bachelor of Business Administration and Management, as well as a PharmD, RPh. I was a pharmacist for six years and I’ve worked in healthcare for a combined 25 years.
Autumn
I have a Bachelor of Science in Nursing and 24 years of experience in healthcare, with nine of those years spent as a nurse educator in the pharmaceutical industry.
Cicely
I have a Bachelor of Science in Nursing degree. I have 18 years of experience working in healthcare and I love being a support for my patients. When I’m not helping patients, I love live music and spending time with my family.
Irene
I’ve worked in the healthcare industry for the last 14 years, where I’ve developed a strong understanding of the patient’s needs and the importance of providing compassionate, quality support.
Megan
I have a Bachelor of Science in Nursing with 12 years of healthcare experience. I love being a Care Coordinator because it allows me to make connections and provide support during challenging times.
Melinda
I have a Bachelor of Science in Nursing and 12 years of experience working in the healthcare industry. Knowing that I can assist through a difficult time is why I love working with patients.
Schedule Time With Your Care Coordinator
You can book 15- and 30-minute check-in calls with your Care Coordinator using the “Schedule now” button below. Please click it to choose a session and select your Care Coordinator from the dropdown menu. You can then select the day and time that best fits your schedule.
Not sure who is your ONWARD Care Coordinator?
Call 1-844-ONWARD1 (1-844-669-2731) to get your Care Coordinator information.
Your ONWARD Care Coordinator is here to help.
You can contact them Monday through Friday, 8 AM – 8 PM ET.
FEELINGS ABOUT TREATMENT
Do you sometimes feel unsure about your treatment, or have questions about how much it’s really helping you? Living with generalized myasthenia gravis (gMG) can be very challenging. You may find yourself wondering how important it is to keep taking treatment prescribed to you.
This is all understandable. Most people can see advantages and disadvantages in any treatment they’re taking.
- You sometimes miss doses – you may find that you forget a dose occasionally, but if it happens regularly, one reason could be that you have some doubts about your treatment
- You haven’t managed to make your treatment part of your routine – for example, you often take it later than you plan to, or only remember at the last minute
- You feel negative about your treatment
If you’re having any difficulties with your treatment, talk to your healthcare team as soon as possible. They can support you to:
- understand what to expect from your treatment
- get a more balanced view of your treatment
- make informed decisions
- take your treatment the correct way
- make your treatment a habit – when you’re getting used to a new treatment, it can seem like a lot of effort, but your healthcare team can help you make it part of your routine
The simple tips below can help you understand and reflect on your feelings about your treatment. You can discuss your insights with your healthcare team.
Write down any questions you have about your treatment and the benefits you see of taking it. This can help you understand the different feelings you may have, so that you can share them with your doctor.
Sometimes, the way you think can affect how you feel about your treatment. It’s normal to think more negatively about things when you’re feeling low. If you notice you’re having negative thoughts about your treatment, try writing them down to discuss with your healthcare team.
Your mood can have an impact on how you think and feel about your treatment. Research has found that depression and anxiety can get in the way of taking medicine, so speak to your healthcare team if you think this may be an issue for you. They can offer support, such as talking therapies and advice on lifestyle steps that may help, like exercise.
Your healthcare team may also point you toward gMG support groups. You may enjoy speaking to others who understand what you’re going through.
It’s important to have people in your life you can open up to. Friends and family members may also have a different view of how you’re getting on with your treatment. They may be able to see that symptoms are improving when it’s not so clear to you, for example.
It’s important to stick to the recommendations from your healthcare team, including taking your medications as prescribed. This is essential for all medications to work as intended.
For ZILBRYSQ, this means making sure you inject one prefilled syringe every day.
Follow the recommendations from your healthcare team as closely as possible. Using a long-term treatment can sometimes cause people to get discouraged, but don’t give up. Your healthcare team can support you to get into a good routine with your medicine.
Missing daily injections means there will be less medicine in your body day-to-day, which could make it less effective than taking it as directed. This is because ZILBRYSQ is recommended to be taken daily to help prevent your immune system from attacking and destroying connections between nerves and muscles.
Your daily dose of ZILBRYSQ should be injected at about the same time each day. If you miss your ZILBRYSQ dose, inject a dose as soon as possible. Then inject your next dose at your regularly scheduled time. Set a new reminder so you don’t forget. Do not inject more than 1 dose per day.
Keep reading to learn more about what to do when you miss a dose.
If you start feeling better while being treated with ZILBRYSQ, it is still important to continue with your daily injections as prescribed. Talk to your doctor or healthcare provider if you have any questions about your treatment.
Tracking your symptoms is an important part of your treatment plan. By documenting your symptoms regularly, you can help tell your healthcare provider how symptoms are impacting your life.
When you write down your symptoms every day, you can accurately and effectively communicate with your healthcare provider about your gMG. Tracking only takes a few minutes each day and can help guide your treatment path in a positive, constructive way.
The Myasthenia Gravis Activities of Daily Living (MG-ADL) scale is used to measure your gMG symptoms. This tool assesses the impact of MG on your daily functions and communicates your symptoms to your healthcare provider.
Make sure you discuss how frequently you should track your symptoms with your healthcare provider. Once you’ve tracked how your symptoms appear, make sure you bring that information to your appointments.
Most people with generalized myasthenia gravis (gMG) have times when their symptoms get worse, even when they’re on treatment. These times are known as flares or flare-ups. You may also sometimes hear them called exacerbations.
In a recent study of patients with gMG, the most frequently reported symptoms were eyelid drooping (reported by 93% of study participants), physical fatigue (89%), symptoms affecting the legs (82%), difficulty breathing (82%), and difficulty holding head up (82%).
A flare-up is when the weakness in some or all of your muscles happen more often or is more severe than usual. It can be mild, moderate, or severe.
Understanding what makes your symptoms better or worse can be helpful when you’re managing a long-term condition. Identifying triggers can help you to:
- understand your gMG so that you can manage it in a personalized way
- feel more empowered and confident about managing gMG
- be more proactive in managing your symptoms day to day
Tracking can help you to identify your triggers. This means regularly keeping a note of your symptoms and anything that makes them better or worse. It’s often easier to see these patterns when you have a record you can look at.
You can track in any way that works for you, for example:
- keeping notes in a standard diary
- using your calendar app
- typing notes on your computer or phone
- using a speech-to-text app – this could be helpful if writing or typing is difficult
The notes don’t have to be long and can include your symptoms — noting when you experience them, what you’ve been doing – for example, any physical activity, what you’ve eaten, your mood, or any external factors you’ve noticed like hot/cold temperatures, illness, or lack of sleep.
You can’t always avoid triggers, but you can often take steps to limit some of them. Here are some quick tips for managing common triggers.
- Prevent poor sleep with some good bedtime habits. Try to get up and go to bed at regular times and make sure your bedroom is quiet, dark, relaxing, and at a comfortable temperature.
- While you can’t always avoid catching a cold or flu, ask your healthcare team about the steps you can take to lower infection risk. These may include having an annual flu vaccine and other vaccines your healthcare team advises. Always get their advice before you have a live vaccine, which is one that contains weakened viruses or bacteria.
- Find ways to cope with stress. Stress is a common trigger in gMG and often an unavoidable part of life. Worsening symptoms can be a cause of stress, creating a vicious cycle. It can be managed through mindful approaches and proactive coping strategies. Here are a few techniques for coping with stress that you may find useful:
- Tackle one source of stress at a time – Identify and manage the most apparent source of current stress; once dealt with, move onto the next. This is much easier than trying to deal with everything at once.
- Indulge in your favorite creative outlets – Put aside time for a creative hobby you enjoy, or start a new one. It’s not about simply filling time. A hobby can be a powerful form of escapism. Find a relaxing activity you’re passionate about, such as art, music, reading, or watching sport – it can be extremely calming and self-affirming.
- Tap into your support network – Being around the people who support you and are important in your life can be hugely beneficial. They may be open to talking about your stresses but their companionship alone can be enough to reduce stress and shift your focus towards the positive.
- Speak with a counselor – Having a sounding board to unload some stress can really help. Friends and family members may instinctively try to offer solutions, which is not always what you need. Sometimes it’s good to just get things off your chest with a counselor who is an expert listener.
- Humor – It would be too easy to suggest that you can simply laugh away your stress, but laughter really is good for the soul. Having a sense of humor and seeing the funny side of daily events is more powerful than you may think.
Talk to your healthcare team about any extra support you need with managing sleep, stress, or other triggers. If you’re finding it difficult to manage stress, or you have any other questions, speak to your healthcare team as you may need some extra support. Support groups for people with gMG can be really valuable, too.
A myasthenic crisis is a potentially life-threatening complication of gMG. It happens when muscle weakness gets worse and makes breathing difficult, so you need support in hospital to breathe. It’s estimated that approximately 15-20% of people with gMG have a myasthenic crisis at least once in their lives. Here are some important points to know:
- Manage your triggers
Anything that makes your symptoms worse can potentially lead to a myasthenic crisis. Infections are the most common triggers. It’s helpful to know your triggers and manage them where possible, although there’s no obvious cause for myasthenic crisis in one-third to one-half of people. - Know the signs
Your healthcare team can tell you about serious warning signs. Make sure you know how to get emergency help. - Get support for symptoms
Myasthenic crisis typically develops after days or weeks of worsening symptoms, so always speak to your healthcare team if you think your symptoms are getting worse. - Stay on track
Work with your healthcare team to keep to your treatment plan. They can support you to lower your risk of both flare-ups and myasthenic crisis.
It can be challenging to stick to a routine, and living with gMG can make your days less predictable. You might be thinking about how you’re going to manage your new treatment, especially when life gets busy or your gMG symptoms get in the way.
Research shows that daily routines, or habits, can help you remember your treatment. A habit is something you do automatically, without thinking, so it’s almost effortless – like brushing your teeth or checking your mirrors before you set off in your car. When taking your medicine becomes something you do automatically, you won’t have to think much about it, and that means you’re less likely to forget. It can take some time for something to become a habit. Read on for some ideas that could help you to make taking ZILBRYSQ a habit.
Think about when, where and how you’ll self-inject, and whether anyone else will help in some way. Try to be specific.
Here are some examples:
- “I’ll set aside time every morning after I’ve had my cup of coffee to self-inject ZILBRYSQ in my bedroom. I’ll ask my partner to help with getting the children ready for school so I can sit quietly and do it.”
- “I’ll make time right after I brush my teeth.”
Research shows it’s often helpful to add a new behavior after something you already do every day. It can make it much easier to remember. Which part of your day is least likely to change? For many of us, that’s the morning, as evening activities may vary more – for example, because we may do something social. Think about what would work for you. You could self-inject after:
- you’ve taken the children to school
- you’ve had your morning shower
- you’ve brushed your teeth
Research shows it can be helpful to create a ritual around self-injecting to help you build it into your day and feel more confident. A ritual is a way of carrying out a routine that’s personal to you. It may include choosing the right time and place to take your medicine, which can make the process of self-injecting as calm and comfortable as possible.
Try writing a list of things that would help you feel more relaxed, such as:
- sitting in a comfortable chair
- putting on some music you love
- listening to a podcast episode
- asking someone to sit with you – unless you prefer to be alone
You can include a reward to celebrate your success afterward. You’d congratulate a friend if they did something well – you can do the same for yourself. A reward could be something simple and manageable rather than an unhealthy treat or something big.
For example, you could:
- have a relaxing bath
- spend a little time doing something you enjoy, whether that’s playing a video game or reading
- order in or cook your favorite meal
You can use cues as simple reminders to take your ZILBRYSQ treatment. A cue is something you put in your environment to remind you to do something. Different cues will work for different people. Here are some examples that may help.
- Put a sticky note somewhere you’ll see it, such as on your bathroom mirror or fridge door
- Use a medication reminder app on your phone or set a recurring alarm
- Leave an empty ZILBRYSQ box in a place that will remind you to take your treatment
Alarms, alerts, and other automated cues can be helpful when you’re first getting into a daily routine, or your daily routine has changed. This could include:
- pairing a reminder with an activity that occurs at the same time each day, such as a meal or getting ready for the day
- setting reminders on your phone
- blocking off time on your calendar
- putting notes where you’ll see them
- keeping the supply of medicine in the same location each time and where you’ll see it daily, if possible
WHAT TO DO IF YOU FORGET YOUR TREATMENT
Your daily dose of ZILBRYSQ should be injected at about the same time each day. If you miss your ZILBRYSQ dose, inject a dose as soon as possible. Then, inject your next dose at your regular scheduled time. Do not inject more than 1 dose each day. Call your healthcare provider if you are not sure what to do.
This can be a sign you may need to adjust your plan for taking your treatment. Ask yourself these questions:
- What got in the way of my treatment?
- Could someone else help – for example, by reminding me to take ZILBRYSQ?
- Could I find a better time of day to self-inject or a better place to keep my injection materials?
Speak to your healthcare team as they may have some ideas. They are there to support you and help you get back on track, so don’t feel embarrassed if you’re finding it hard to get into a routine with your treatment. Other people do, too.
At times, your daily routine may change – for example, because you’re on vacation, you have guests staying or you have a busy day that doesn’t go as planned. At these times, think of some extra steps to help you take ZILBRYSQ at your usual time, such as putting a sticky note somewhere you’ll see it, even if you don’t normally need to do that. Again, it’s important to make a plan.
Using IF/THEN statements is a way to adjust your plans so you take ZILBRYSQ at the usual time, even when your routine is different.
Here are some examples:
- “If I know I may eat later than usual, then I’ll self-inject before my meal instead of after so that I still take my treatment at the normal time.”
- “If I’m out of my usual morning routine during the holidays, then I’ll set an alarm so I remember to self-inject at the usual time, no matter what else is happening.”
- “If there are too many people around for me to self-inject in my living room after breakfast as normal, then I’ll do it in a quiet, calm place, such as my bedroom, instead.”