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7 Tips for Managing MS Infusion Side Effects

Medically reviewed by Madison Saxton, PharmD
Written by Torrey Kim
Posted on April 14, 2023

If you’re going to start a disease-modifying therapy (DMT) through intravenous infusion, you’ll want to prepare yourself and understand potential side effects. A DMT is a medication that is used to slow down the progression of multiple sclerosis (MS). DMTs work by suppressing the immune system to prevent this damage from happening. It’s possible to experience side effects when you take any new medication — even those available over the counter. Because some DMTs are delivered by intravenous (IV) infusion, you may be facing an added level of uncertainty about what to expect.

The U.S. Food and Drug Administration (FDA) has approved five IV-infused DMTs to treat MS. Each treatment is administered on a different schedule:

  • Alemtuzumab (Lemtrada) — Given over a course of five days, followed by another three-day round a year later
  • Natalizumab (Tysabri) — Administered every four weeks for relapsing forms of MS
  • Ocrelizumab (Ocrevus) — Infused every six months
  • Ublituximab (Briumvi) — Administered once every 24 weeks
  • Mitoxantrone (Novantrone) — Given once every three months

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.

1. Ask About Premedication

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. Or, 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 pre-infusion medications, such as:

  • Acetaminophen (Tylenol)
  • Corticosteroids such as prednisone or dexamethasone
  • An antihistamine such as diphenhydramine, sold as Benadryl

Whether you take these orally or via IV 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 before getting their DMT 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.

2. Plan To Rest After Infusions

If you do take premedication before your infusion — particularly Benadryl — you may feel sleepy afterward, as Benadryl has the potential side effect of causing tiredness. Therefore, many people plan for a friend to drive them home after the infusion so they aren’t behind the wheel of a car feeling drowsy. In addition, 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 pre-med IV Benadryl makes me sooooo tired.” A third member said, “I get very tired for about two days after my Tysabri infusion.”

3. Hydrate Before Your Infusion

Making sure that you’re hydrated before your infusion — and that you remain hydrated throughout — 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.

“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 inquire about whether you should eat or drink the day of your infusion so you’re prepared ahead of time.

4. Speak Up About Side Effects With the Care Team

If you experience side effects during your infusion, let the clinic staff know immediately. Call your MS specialist about any side effects after your infusion, no matter how mild, even if you aren’t sure whether they’re associated with your DMT. Your neurology care team needs to know what you’re going through so they can decide whether extra monitoring is needed, or if they need to make any changes.

“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,” the member advised.

5. Ask About Vitamin Supplementation

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.

6. Take Steps To Avoid Infection

Most intravenous DMTs list infections as a possible side effect because these drugs weaken aspects of the immune system to prevent MS attacks. You may be more prone to infections while taking an infused DMT, so you can take steps to help avoid them. These include:

  • Wash your hands frequently with warm water and soap.
  • Consider wearing a mask over your mouth and nose if you’re in a crowded space.
  • Avoid contact with people who have symptoms of an illness.
  • Ask your doctor about which vaccinations may be appropriate for you and how to time them around your IV infusions.
  • Disinfect commonly used surfaces with antibacterial wipes.
  • Wash all cuts on your skin and cover them with bandages.
  • Avoid sharing utensils and dishes with others to avoid contamination.
  • Cook all foods thoroughly, and avoid eating raw ingredients.

If you develop symptoms of an infection, let your neurologist know right away.

7. Know When To Reschedule Your Infusion

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.

There is a period of time between IV infusions of medications for MS when the effectiveness of the medication begins to wear off. This is called the “crap gap,” and your symptoms may return or get worse.

Remember that everyone’s experience with MS infusion therapy is different, and there is 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.

Talk With Others Who Understand

MyMSTeam is the social network for people living with MS and their loved ones. On MyMSTeam, more than 197,000 members come together to ask questions, give advice, and share their stories with others who understand life with MS.

What strategies do you use to manage infusion side effects? Did you find this article helpful? Share your experience in the comments below or on MyMSTeam. Your story may help others who are taking disease-modifying therapies for the first time.

    Posted on April 14, 2023
    All updates must be accompanied by text or a picture.

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    Madison Saxton, PharmD obtained her Doctor of Pharmacy from Lake Erie College of Osteopathic Medicine (LECOM) in Bradenton, Florida. Learn more about her here
    Torrey Kim is a freelance writer with MyHealthTeam. Learn more about her here

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