During your treatment, ONWARDTM can provide support to help you make the most of your experience with RYSTIGGO. Whether that means self advocacy, treatment tracking tips, or one-on-one support from your dedicated Care Coordinator – ONWARD is here for you.
Tracking your symptoms is an important part of your treatment plan. By tracking your symptoms regularly, you can help tell your doctor how symptoms are impacting your life.
Work with your doctor to determine how often you should be tracking. To track symptoms, you can use the MG-ADL.
What is the MG-ADL?
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 doctor.
Once you’ve tracked how your symptoms appear, make sure you bring that information to your doctor’s appointments.
Why track symptoms?
When you write down your symptoms every day, you can accurately and effectively communicate with your doctor about your gMG. Tracking only takes a few minutes each day and can help guide your treatment path in a positive, constructive way.
Appointments may be brief.
When all of your symptoms are documented in one place, your doctor can quickly understand how your gMG is impacting your everyday life.
You know your symptoms best.
It can be difficult to accurately, clearly discuss symptoms with your doctor. Writing down your symptoms can make it easier to communicate effectively during your appointment.
You can form a team with your doctor.
Tracking your symptoms shows your doctor that you are a proactive partner in your healthcare.
Once you’re at the infusion site and your dose has been prepared, a RYSTIGGO infusion may take approximately 15 minutes.*
There are lots of things you could do during this time:
- Play a game on your phone
- Do a puzzle or game you brought with you
- Enjoy a snack or beverage, as guided by your doctor
- Chat with a friend or caregiver who came with you
Checking in with your RYSTIGGO treatment journal, Starting Strong, could also be a good way to spend this time. In this journal, you’ll find information and interactive exercises to help support you through your treatment plan. Talk to your Care Coordinator to get your copy of Starting Strong.
*Time of administration may vary by patient. Duration of infusion may be longer based on flow rate and patient weight.
Getting started on a new treatment can take a lot of your energy. You can use these tips to help find your momentum.
Mindfulness
This is the process of maintaining a moment-by-moment awareness of your thoughts. As you practice mindfulness, you can focus on the present moment instead of worrying about the future or dwelling on the past.
This sounds simple, but it’s a skill you may need to build. Use breathing exercises to practice mindfulness.
- Sit in a quiet place and breathe deeply.
- Focus only on your breathing. As your mind starts to wander, bring your thoughts back to your breath.
- Stay like this for 5 minutes.
In the short term, mindfulness exercises can promote relaxation and de-stressing. Over time, repeating this process will help you choose where to channel your thoughts and feelings throughout the day. For example, if you are experiencing stress over something that is outside of your control, mindfulness can help alleviate that stress by channeling your thoughts elsewhere.
Making Time for Yourself
Remember, you are more than your gMG. You don’t need to dedicate all of your waking hours to your treatment. So be sure you make time for the other parts of your self. Set aside time to enjoy your hobbies, quiet time, or whatever else makes you happy.
Making time for yourself could also mean resting. When you’re feeling low on energy, don’t feel guilty about lying down or having an afternoon nap. After your rest, you can get right back to your day.
Simple things
Things Always make time for life’s simple pleasures. Enjoy a good meal, talk with your friends, or play with a pet. These are some of the best things life has to offer, and gMG doesn’t mean you need to miss out on them.
Self-Kindness
Above all else: Be kind to yourself. Cut yourself slack, celebrate wins, and recognize the progress you’re making. A little kindness goes a long way.
After completing your 6-week treatment cycle, you’ll enter a treatment break.
During the break, you won’t receive RYSTIGGO infusions. Listen to your body and track your symptoms. If symptoms return, tell your doctor.
Your doctor will work with you to determine when and if further treatment cycles are appropriate.
As you go through your treatment path, keep your doctor informed about your progress. If you see any changes in your symptoms or how you’re feeling, discuss these things with your doctor.
Your ONWARD Care Coordinator is also here to help. Don’t hesitate to get in touch with your dedicated Care Coordinator.