ONWARD® is a personalized support experience built to help you through every step of your prescribed UCB treatment. ONWARD4U gives you access to important information and resources related to your RYSTIGGO® treatment, including:
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RYSTIGGO® (rozanolixizumab-noli) is a prescription medicine used to treat adults with a disease called generalized myasthenia gravis (gMG) who are anti-acetylcholine receptor (anti-AChR) antibody positive or anti-muscle anti-specific tyrosine kinase (anti-MuSK) antibody positive.
Myasthenia gravis (MG) results from a disruption in signaling between nerves and muscles. This disruption happens in the neuromuscular junction (NMJ), the place where the nerve cells and muscles communicate. Generalized myasthenia gravis (gMG) is a more severe form of MG.
RYSTIGGO works by targeting and blocking an immune system protein called FcRn (neonatal Fc receptor), an underlying cause of gMG.*
*The exact mechanism by which RYSTIGGO works in gMG is unknown.
Watch the video below to learn more about how RYSTIGGO works.
For more information on RYSTIGGO, visit:
Understanding Treatment Cycles and Breaks
RYSTIGGO is given once weekly over 6-week cycles. You will receive 6 doses in total, 1 week apart.
This 6-week period is called a treatment cycle. Every cycle is followed by a break in your RYSTIGGO treatment. During this break, you can work with your doctor to make a plan for future cycles, if needed.
Why is RYSTIGGO administered in 6-week treatment cycles?
RYSTIGGO dosing is based on how RYSTIGGO was studied in clinical trials and the final approval by the FDA. Your healthcare provider may start subsequent treatment cycles based on clinical evaluation.
Do I have to attend all 6 infusion appointments?
The recommended dose is administered once weekly for 6 weeks. It is important to attend all infusion appointments as indicated unless otherwise instructed by your doctor.
What if I miss an infusion appointment?
You should always contact your healthcare provider immediately if a dose is missed. In most cases, RYSTIGGO may be administered up to 4 days after the scheduled time. Thereafter, resume the original dosing schedule until the treatment cycle is completed.
How many 6-week treatment cycles do I need?
Most people may require repeated cycles of RYSTIGGO to manage their gMG symptoms. Everyone responds to treatment differently, so it is important to monitor your progress. After your treatment cycle, work with your doctor to determine if or when another cycle is needed.
What is the treatment break?
The treatment break is the time between treatment cycles. The length of your breaks will be based on individual treatment experience and your doctor’s clinical judgment. However, the safety of starting later cycles sooner than 63 days from the start of the previous treatment cycle has not been established. It’s important to keep track of any gMG symptoms that may return during breaks from treatment. During this treatment break, you don’t attend infusion appointments—you simply keep track of how you feel and whether you see changes in your symptoms. You should communicate any changes in your symptoms to your healthcare provider, as they will determine if or when you need additional treatment cycles based on a clinical evaluation of your symptoms.
For more information on RYSTIGGO, please visit:
An infusion is a method of delivering medicine to the body. Subcutaneous (under the skin) infusions are typically administered by a healthcare professional using an infusion pump to regulate the rate at which medicine is delivered.
Once prepared by a healthcare professional, RYSTIGGO is given as a subcutaneous infusion in about 15 minutes*
- As a subcutaneous infusion, where a needle is inserted under the surface of the skin.†
- At an infusion center, doctor’s office or outpatient hospital clinic. At-home infusions with a nurse’s assistance may also be available.‡
- Followed by an additional 15-minute period for routine monitoring, once the infusion is complete.
Your doctor can provide more information about subcutaneous infusions and what to expect on infusion days.
*There are 3 recommended doses of RYSTIGGO, based on body weight. Preparation and infusion time may vary by patient, dosage, infusion provider, and/or provider location.
†In the lower abdomen below the belly button. Do not receive RYSTIGGO in areas where the skin is tender, bruised, red, or hard, or contains tattoos, scars, or stretch marks.
‡At-home infusions, with nurse assistance, are available based on insurance eligibility determination.
Read this helpful guide about subcutaneous infusions.
You may receive RYSTIGGO at an infusion center, outpatient hospital clinic, or your doctor’s office.
Before receiving RYSTIGGO, tell your healthcare provider about all your medical conditions, including if you:
- Have a history of infection or think you have an active infection.
- Have received or are scheduled to receive a vaccine (immunization).
- Are pregnant or plan to become pregnant or are breastfeeding or plan to breastfeed.
- Are taking any medicines, including prescription and over-the-counter medicines, vitamins, and herbal supplements.
Infusion Center
Most people will receive RYSTIGGO at an infusion center. Infusion centers are where treatment is given at a designated facility or center outside of a hospital or doctor’s office. These centers provide infusion therapies, including subcutaneous infusions like RYSTIGGO.
While there are many infusion centers across the country, you may still have to travel, and this could be an issue if you have a more involved infusion schedule. However, an infusion center may be an option if your infusions tend to be fewer in number.
Infusion Center Finder
If you need help finding an infusion center.
Home Infusions
You may be able to receive your infusions at home, administered by a healthcare professional, such as a nurse who travels to your home. This might be an ideal choice for those with busy schedules as there is no need for travel and allows for therapy sessions to feel more comfortable.
Based on insurance eligibility, you may be able to administer RYSTIGGO at home with a nurse’s assistance. Be sure to discuss options with your doctor.
Did you know that you’ve been assigned a dedicated ONWARD Care Coordinator who will provide one-on-one support throughout your RYSTIGGO 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 8 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 6 years and I’ve worked in healthcare for a combined 25 years.
Brittany
I have a Bachelor of Science in Nursing degree. I have 18 years of experience working in healthcare. I also love reading and spending time with my children.
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.
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 meetings with your Care Coordinator using Microsoft Bookings. Click the “Schedule now” button, 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-ONWARD-1 (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.
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 continue 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 an infusion appointment – you may find that you forget an appointment 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 might find yourself putting off scheduling your next appointment
- 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 RYSTIGGO, this means attending all your treatment cycle infusions: 6 infusions per cycle, given once a week for 6 weeks
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 infusions means there will be less medicine in your body, which could make it
less effective than taking it as directed. If you miss a dose, contact your doctor
immediately for advice and to schedule another appointment to receive RYSTIGGO
within the next 4 days. Then go back to your usual dosing schedule until the treatment
schedule is completed.
What if I start feeling better during a cycle of RYSTIGGO treatment?
Talk to your doctor about these feelings before deciding to stop your treatment.
Every 6-week cycle is followed by a break in your RYSTIGGO treatment. During this break, you can work with your doctor to plan for future cycles, if needed.
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.
ONWARD has developed a treatment journal with the MG-ADL tool you can use to track your symptoms. The Starting Strong RYSTIGGO Treatment Journal contains helpful information, including week-by-week treatment topics and tips for turning the results of your symptom tracking into meaningful conversations with your doctor and healthcare team.
Work with your healthcare provider to determine how often you should be tracking.
Following your first prescribed treatment with RYSTIGGO®, you’ll have more focused conversations with your
healthcare provider. You’ll want to dedicate part of your appointment time to talk about topics such as how you are
feeling and how you are managing your generalized myasthenia gravis (gMG) with RYSTIGGO.
Download the Doctor Discussion Guide to help make sure that you’re getting the most out of 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 happens more often or is more severe than usual. It can be mild, moderate, or severe. Signs of a flare-up include any of the following symptoms getting worse:
- Trouble swallowing or speaking
- Trouble breathing or shortness of breath
- Trouble walking or holding onto things
- Droopy eyelids or double vision
- Feeling very tired
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 counsellor 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.
Lots of people with gMG find it helpful to have different kinds of support. Anything that can help you manage your energy levels can help your overall well-being.
Everyone’s different and you may not feel that you need much help, but even occasional extra support can make a big difference. Simply knowing you can ask for help can be reassuring too. It’s worth bearing in mind that your needs may change over time, so it’s a good idea to have a support network in place in case you need to tap into it at some point. Your healthcare team is part of your support network too.
Why can it be hard to ask family, housemates, and friends for help?
There are lots of reasons you may find it difficult to ask those closest to you for help. You might not want to burden them or you may worry that it could change the relationship you have with them – especially with a partner.
Why can it be hard to ask work colleagues for help?
It can be hard to tell co-workers about a long-term condition because you might be worried you could be seen differently and that it could affect your career or you might not want to think about gMG while at work.
Find inspiration and support from the gMG community
Connect with others who may share your story and relate to your experiences. Check out these organizations and advocacy groups in the gMG community.
General Disclaimer: The following information is provided for educational and support purposes. UCB does not endorse any specific organization or the content on their respective websites. This is not a complete list. Be sure to look for local support groups that may be in your area.
- Caregiver Action Network (CAN) serves a broad spectrum of family caregivers.
caregiveraction.org - Conquer MG supports, informs, advocates, and funds research. Our goal is to provide programs and services that have a positive, direct impact on MG patients and their families.
myastheniagravis.org - Myasthenia Gravis Foundation of America (MGFA) is a leading health-based non-profit committed to finding a cure and better treatments for people living with Myasthenia Gravis.
myasthenia.org - Myasthenia Gravis Holistic Society aims to empower Myasthenia Gravis patients and their care teams through outreach, awareness, community groups, and support resources.
mgholisticsociety.org - The MG Friends Program is a peer-to-peer phone support program that helps ensure that you have the information you need to face this diagnosis and improve your quality of life.
myasthenia.org/Living-With-MG/Find-Support/MG-Friends-Program - The Myasthenia Gravis Association serves those living with MG, their family and friends in their communities. For over 60 years, the Myasthenia Gravis Association has been devoted to their mission, to increase public awareness and to provide MG-specific educational opportunities.
mgakc.org - The National Alliance for Caregiving (NAC) is a non-profit coalition of national organizations who share a vision of a society that values, supports, and empowers family caregivers to thrive at home, work, and life.
caregiving.org - Today’s Caregiver is the first national magazine dedicated to caregivers that’s a leading provider of information, support, and guidance for family and professional caregivers.
caregiver.com
Be sure to look for local support groups that may be in your area. If you need help finding them, reach out to us at MGAdvocacy@ucb.com.
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