Before you start a new disease-modifying therapy (DMT) through intravenous (IV) infusion for multiple sclerosis (MS), it’s helpful to understand the potential side effects. Any medication can cause side effects — even those available over the counter. If you’ve never taken a DMT delivered via IV infusion, you may be unsure about what to expect.
Read on to learn more about infused DMTs and steps you can take to help prevent side effects from MS infusions.
DMTs work by suppressing the immune system to reduce attacks on the central nervous system (CNS), which includes the brain, spinal cord, and optic nerve. The U.S. Food and Drug Administration (FDA) has approved the following IV-infused DMTs to treat MS. Each treatment option is given on a different schedule:
Currently, a biosimilar to natalizumab is available, called natalizumab-sztn (Tyruko). Biosimilars are nearly identical copies of the original biologic drugs in terms of effectiveness, safety, and quality. Other biosimilars are in development.
Learning more about the side effects that may accompany these infusions may help you be prepared and manage any problems. Always follow medical advice from your health care team on how to prepare for infusions. The following tips can help make the infusion experience better. As always, discuss any problems or concerns regarding DMTs with a health care professional.
Anyone receiving an MS infusion treatment may develop an infusion reaction, which is one reason why these drugs are administered in a clinic setting, where you’re under close medical supervision.
You might have an allergic reaction to some of the components in the infusion. Additionally, your body may view the drug as an invader or a threat, and your immune system could react with symptoms such as itchy skin, pain, hives, a headache, chills, difficulty breathing, gastrointestinal issues, or a fever. To prevent the odds of developing these reactions, your neurologist may recommend preinfusion medications, such as:
Whether you take these orally or through an IV line at the infusion site depends on your doctor’s recommendations and the specific DMT you’re prescribed.
MyMSTeam members often discuss their experiences with pretreatment using corticosteroids and antihistamines to avoid feeling bad after infusions.
“It’s infusion day, I’m so happy,” one member wrote. “What else could a guy ask for? Tylenol, Benadryl, steroids, oh my.” Another member wrote, “Steroids — check, Benadryl — check, Ocrevus — check. Kicking MS’s butt — check.”
If you’ve had negative reactions to steroids, diphenhydramine, or acetaminophen in the past, let your doctor know. Some MyMSTeam members have reported that their infusions had to be rescheduled because they couldn’t tolerate the pretreatments.
“Found out I was allergic to Benadryl due to a reaction and had to reschedule my Ocrevus,” one member wrote.
If you do take premedication before your infusion, you may feel sleepy afterward. Diphenhydramine in particular has the potential side effect of causing tiredness. Therefore, many people plan for a friend or loved one to drive them home after the infusion so they aren’t behind the wheel of a car feeling drowsy.
Additionally, members of MyMSTeam often discuss how they plan a light, low-energy day after their infusions. “Ocrevus in the morning, followed by a Benadryl nap,” one member wrote.
Another said, “I had my fourth Ocrevus infusion on Monday, and it went well, except I had to work all the way through it. Normally, I take off and nap through it except for the vital checks. The premed IV Benadryl makes me sooooo tired.”
A third member said, “I get very tired for about two days after my Tysabri infusion.”
Staying well-hydrated before and during your infusion can help reduce common side effects. In fact, one study followed people preparing for an ocrelizumab infusion who increased their hydration the night before and the day of the infusion. They were then pretreated with antihistamines and acetaminophen. The researchers found that this pretreatment regimen led to 60 percent fewer infusion reactions.
“I’m trying to remember to hydrate today because tomorrow is infusion day,” one MyMSTeam member wrote. Another replied, “It really does make such a huge difference.”
Ask your doctor about how much you should hydrate on the days leading up to your infusion. Also, find out if you should eat or drink on the day of your infusion so you’re prepared ahead of time.
If you've experienced side effects during previous infusions, inform the clinic staff. After your infusion, contact your MS specialist about any side effects, even if they seem mild or you're unsure if they're related to your DMT. Your neurology care team needs to be aware of what you’re experiencing so they can determine if extra monitoring is necessary or if any adjustments are needed to prevent future side effects.
“I had an infusion today, and I feel light-headed and nauseous,” one MyMSTeam member wrote. Another advised them to call their doctor right away. “They can help you address these symptoms and get you through it,” they wrote.
Depending on the DMT drug you’re taking, you may benefit from supplementing with nutrients such as vitamin D, which could help prevent or reduce side effects.
Your doctor may want to test your levels of the nutrient first. “I tested very low for vitamin D at my last appointment, so my neurologist prescribed this vitamin and I feel so much better,” one member wrote.
Always let your doctor know about any supplements you take, in case they might interact with your prescribed MS medications.
Most intravenous DMTs list infections as a possible side effect because these drugs weaken the immune system, which helps prevent MS attacks. You may be more prone to infections while taking an infused DMT, so consider taking the following steps to help avoid them:
If you develop symptoms of an infection, let your neurologist know right away.
There may be times when you simply shouldn’t get an infusion, such as if you’re sick or have an infection. Your doctor may also advise you to reschedule during active MS flare-ups or if you have another major medical procedure scheduled around the same time as your infusion. Talk to your neurologist if you’re concerned about the timing of your infusion so you can work together to maximize the safety and effectiveness of the treatment.
Some people may experience worsening symptoms close to the time of reinfusion, known as the “wearing-off phenomenon.” This phenomenon may be seen with certain DMTs and does not necessarily indicate poor control of MS. People usually report fatigue, cognitive or mobility problems which improve a few days after the infusion.
Remember that everyone’s experience with MS infusion therapy is different, and there’s no one-size-fits-all approach to managing the potential side effects. By working closely with your health care team, watching carefully for any changes in your symptoms, and taking steps to ease discomfort, you can make the most of your treatment. Infusion therapy may seem daunting at first, but with the right preparation and support, you can move forward with confidence.
MyMSTeam is the social network for people living with MS and their loved ones. On MyMSTeam, more than 215,000 members come together to ask questions, give advice, and share their stories with others who understand life with different types of MS.
What strategies do you use to manage infusion side effects? Did you find this article helpful? Share your experience with MS treatments in the comments below or on MyMSTeam. Your story may help others who are taking disease-modifying therapies for the first time.
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I have been getting tysabri for years with no problem- however this time I felt real drained after it — I have a question does anyone on this feel like the medicine wears off - I only feel his way… read more
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