Preparing for Your Infusion By the LEMTRADA Team • May 4, 2018
The paperwork is done, you’ve gotten all the required tests and vaccines and it’s time to start your treatment with LEMTRADA—how exciting! It’s also totally normal to feel a little nervous now that it’s time to start your first infusion. After all, this is a new experience. But taking time now to review a few tips and helpful information may help make the week more comfortable.
One thing that may help is knowing exactly what to expect when you get to the infusion center. You may have the option to visit ahead of time if the center is nearby or in your doctor’s office, but simply calling and scheduling a time when someone can help walk you through their center’s set up and specific protocol can also really help. They will be able to answer all the questions, big and small, that you‘ve been wondering about.
Some questions you could ask are:
- Will I have my own room, or be in a room with others?
- Is outside food and drink allowed?
- Will food be served?
- Is there a refrigerator if I bring my lunch?
- Can I bring a friend or family member along?
Take a moment to write down your questions in advance so you can get answers to whatever is on your mind. Every infusion center is different, but knowing more beforehand can make the first day of your infusion a little less stressful.
Know What to Expect
With pre-medications, the infusion, and observation afterward, the whole infusion process usually lasts about 8 hours. About 4 of these hours will be dedicated to the LEMTRADA infusion itself. After, you will need some time to rest and relax before returning for the next day’s infusion.
LEMTRADA can cause serious side effects during infusions or up to 24 hours or longer after. Tell your healthcare provider right away if you have any of the following symptoms during the infusion, and after you have left the healthcare facility:
- swelling in your mouth or throat
- trouble breathing
- fast, slow, or irregular heartbeat
- chest pain
If a serious infusion reaction happens while you are receiving LEMTRADA, your infusion may be stopped.
To lower your chances of these reactions, your healthcare provider will give you corticosteroids before your first 3 infusions. You may also be given other medicines before or after the infusion to try to reduce your chances of these reactions if they happen.
During your LEMTRADA infusions, it’s recommended that you dress comfortably. You’ll be sitting in a chair for most of the day, so sweatpants or other clothing you can relax in will be your best bet. You may also want to consider dressing in layers in case it is too warm or too chilly for you in the infusion center. Some people even suggest bringing a pair of warm socks, a blanket, or a favorite pillow to take a nap if you like. You might even think about packing an eye mask, or earplugs.
Keep Yourself Entertained
It’s a good idea to pack some activities to keep you entertained. Before your first infusion, you should receive a LEMTRADA activity kit, but it’s still a good idea to pack a bag with some of your other supplies. Maybe you’ll bring a book you just haven’t been able to put down, or you can get a selection of magazines before coming to the infusion center.
Many people spend the day watching movies on a computer or catching up on their favorite television shows. Just remember, if you’re going to bring electronics to keep you busy, don’t forget to bring headphones, so you can listen without disturbing anyone else, and any chargers you may need. It’s a long day, so let’s make sure your batteries stay charged and you catch the good part of your favorite action flick!
Read how Chad passed the time during his infusions.
Bring Water and Snacks
One thing we like to emphasize is how important it is to stay hydrated. Bring a big water bottle, and when you finish drinking your water, ask your nurse if he or she can refill it. If you think other drinks are easier or will motivate you to drink more, consider a flavored water, vitamin drink, or sports drink.
As for snacks and meals, every infusion center is different, so you may need to ask about their policy on food. But nobody enjoys being hungry, so make sure you are still eating throughout the day to keep your strength up. Consider popping something simple in your bag to munch on, like string cheese or granola bars, you decide.
Invite a Care Partner
Of course the infusion center nurses will be there, but having a friend or family member with you for support or just to talk to may help make the time go faster. Even if they don’t stick around for the whole day, it’s nice to have somebody sit with you for a while. A quick call ahead to the infusion center will help you to understand what the space is like and may help to make everyone as comfortable as possible.
Remember, your nurses want to make sure that you’re comfortable during your LEMTRADA infusion, but you have to let them know how you’re feeling. Communication is key; so if something doesn’t feel quite right, or if you need something, don’t hesitate to ask. Your nurses are there to help.
Following these tips may help make your infusion days more comfortable. And remember, in the days following your infusion, let your healthcare provider know about any side effects you experience. And if you have any questions, before or after, you can always call your MS One to One® Nurse.
Let us know how you prepared for your infusions in the comments!
- LIVING WITH RELAPSING MS
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