Monthly Monitoring: 4 Things You Should Know By MS One to One • September 12, 2018
Hello, my name is Kisha. I’m a registered nurse with 20 years of experience, and I’m an MS-certified nurse. Since 2014, I have been with the MS One to One® Program, supporting patients on LEMTRADA. One question I often get from LEMTRADA patients is, “How do you support me in my monthly monitoring?" So I want to share how it works and some tips for doing it well.
The Post-Infusion Phase
Let’s say you have just completed your first LEMTRADA course, and now you will be entering the post-infusion phase. This includes monthly lab monitoring, ongoing self-checks, and yearly skin checks for potential serious side effects, including autoimmune problems and skin cancer (melanoma), and additional support when needed from your MS One to One Nurse. Your lab series will start one month after completing your first course of infusions, and will continue until 48 months or more past your last LEMTRADA course. It’s a long-term commitment, but we are here to help you! Monthly labs (which consist of urine and blood specimens) may help your healthcare provider identify potential serious side effects. The goal is early detection of changes—and early treatment if needed. Even if you are feeling fine, keeping up with your monitoring schedule is essential, and is just as important as receiving your LEMTRADA.
Tips for Monthly Monitoring
- Choose the lab option that is best for your needs. Our Central Lab Program offers three options:
- Go to a LabCorp® or Quest Diagnostics® patient service center*
- Have a traveling lab tech visit you at your home or office
- Go to your healthcare provider’s office†
What fits best into your day-to-day life? If you have an unpredictable schedule, you may find that being able to go to the lab center yourself is the best option. If that’s not convenient, the traveling lab technician can come to you. Or of course you can go to your healthcare provider’s office.
- Keep it consistent. You will be given a date from your HCP for when you should get your labs done, based on when you completed your infusions. Aim to keep as close to this date every month as you can. Some months your date may fall on a holiday or weekend. For women, it is not recommended for you to provide a urine sample if you are menstruating. In these situations, simply have your labs done a few days earlier or later. It is a requirement and your responsibility to have labs done every month. Here are a few suggestions for remembering your monthly labs:
- Set reminders. If it’s in sight, it’s in mind! Add your appointment date to your phone and/or work calendar to chime when your labs are due.
- Jot it down. Large paper or desk calendars are helpful for appointments and other to-do’s. Add a special sticker specifically for your lab date.
- Use My Link. If you are already a LEMTRADA patient, you can set up monthly reminders in your My Link account. Log in on the website or use the My Link app, available for iPhone or Android.
- Use a sticky note. Place it where you can view your date daily.
- Have your care partner/family get involved.
- Utilize your MS One to One Nurse. We love talking with our patients! Let’s discuss a plan for monthly lab reminder calls to help with your monitoring appointments.
Using the traveling lab service? The nice thing about this option is that they will call you prior to your scheduled appointment to remind you it’s coming up.
- Do regular self-checks. Just as your healthcare provider is checking your monthly lab values, it’s also important for patients to perform self-checks in between. Take note of any changes with your body, skin, mouth, energy, and mood. Contact your healthcare provider if you notice changes. Skin and mouth checks can be done when bathing, while drying off after a bath, and while you’re brushing your teeth. Sometimes a full-length mirror is helpful for a full-body view, or enlist the assistance of a care partner or family member with sharp eyes. Just to be thorough, here is a list of some symptoms to monitor for and/or report to your healthcare provider:
- What if…? Life changes constantly! Maybe your work situation has changed, you’ve moved, you want to live somewhere warmer during the winter months, or you have changed doctors. So you may need to get your labs collected in a different location. Your lab options are always flexible to suit life changes, as often as needed. Call your MS One to One Nurse and let us help you work out the kinks!
Any questions? Call MS One to One any time, day or night, at 1-855-676-6326.
* Trademarks not owned by Genzyme Corporation or Sanofi are the property of their respective owners.
† If the samples are taken at your healthcare provider’s office, you may have to pay a co-pay. However, the cost of analyzing the samples will be covered by the LEMTRADA Central Lab Program.
- MS ONE TO ONE
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