Conversations About MS B-Cell Therapy

You can take ocrelizumab, rituximab, and ublituximab-xiiy at an infusion clinic. The first two appointments are 2 weeks apart. After that, you’ll go every 6 months. You’ll get natalizumab each month at an infusion clinic. But alemtuzumab is given 5 days in a row, then you’ll get 3 daily infusions each year. 

You can also get ocrelizumab as an injection into your stomach at your doctor’s office every 6 months. Ofatumumab is a shot you give yourself at home from a prefilled autoinjector pen. You start with three shots over 2 weeks, and then one shot a month. 

Should You Expect Side Effects?

Like any medicine, B-cell therapy can have side effects. They usually are fairly mild and go away quickly, says Hafler. The most common side effects include infusion site reactions and risk of infections.

Infusion reactions. It’s usually a reaction that turns the skin red and swells at the infusion site, explains Hafler. It can often be treated with steroid medication.

Increased risk of infection. “The most common ones we see are bladder infections,” says Hafler. Since B-cell therapy slightly weakens your immune system, you may develop more upper respiratory infections, too.

More rarely, B-cell therapy can make you at risk for viral infections like herpes. The treatments can also trigger an increase in hepatitis B virus from a chronic or past infection. This is why you’ll get tested for hepatitis B before you begin treatment.

Just keep in mind that everyone is different. Kim DiBiccari, 43, who lives in Queens, New York, has had MS since 2007. DiBiccari used to get headaches during and after her ocrelizumab infusions. She now manages to avoid headaches by drinking about 40 ounces of water during her 6-hour treatment. “I just make sure I’m well hydrated that whole week before and after treatment,” she says. 

Veleta Savannah, 41, a chief financial officer in Oakland, uses rituximab to treat her MS. About 2 days after her infusion, she is usually hit by a wave of fatigue that lasts about a day. “I usually just crawl into bed and wait it out,” she says. 

How to Talk to Your Loved Ones

DiBiccari is no stranger to MS–both her grandma and her aunt have it. She found it very easy to discuss with her family. “When ocrelizumab first came out, it was huge in the whole MS world because there didn’t seem to be any other good treatments available, both to treat and prevent flare-ups,” she says. “They were supportive, and gave me hope.”

She does, however, recommend that you reach out to them for support throughout treatment. “It’s a good idea to have someone drive you there and back, because before you get treatment they often give you Benadryl, to reduce chances of an allergic reaction, and it makes you drowsy,” she remarks. 

DiBiccari often shows up at her infusion appointments with her husband and her certified pet therapy dog, a Chiweenie named Rico. “You’re there for a long time–it’s good to have company,” she stresses. 

Adkins agrees. “When I first learned I had MS, at the age of 25, I was scared, but also, as a male, I bottle everything up,” he says. “But my wife encouraged me to talk about my feelings, which really helped.” Adkins went to B-cell infusion treatments with his father-in-law, which helped him pass the time. 

“It was a good time for us to catch up with each other about our lives,” he says. “But more importantly, it made me feel better that my whole extended family had my back.” Today, Adkins gets the ocrelizumab injections in his doctor’s office, which takes only about 30 minutes, compared to a 6 to 8 hour B-cell infusion. 

Should You Let Work Know?

It’s always a good idea to let work know when you start a B-cell therapy, advises Hafler. “Just keep in mind that the side effects aren’t very different from other, older MS therapies, such as interferons,” he says. 

“You’ll often take a day off of work, if you get an infusion, and you may have to take off the next day if you are really fatigued. But it’s only twice a year. It is much less disruptive to work than weekly or even daily injections that also have side effects.”

The good news is that your work activities often improve after you start B-cell therapy. Until recently, DiBiccari was a special education teacher in New York City. Her days included long hours of standing, which is hard for people with MS. 

“I had so much fatigue, I could barely get through the day,” says DiBiccari. She requested classrooms on the first floor, so she would not have to climb stairs. She also asked for occasional work breaks and an electric heater in her room in the winter to calm spastic leg muscles. Once she went on ocrelizumab, however, many of those symptoms improved or even disappeared. 

Your work may need to provide some accommodations or changes to your work environment covered under the Americans with Disabilities Act (ADA). Savannah often works from home, especially during flu and COVID-19 season. “I never used to get sick before I started B-cell therapy, but now I get respiratory bugs much more frequently,” she says. “A couple years ago, I ended up hospitalized with pneumonia. It just isn’t worth it.”

Who Should Avoid B-Cell Therapies?

Most people can take B-cell therapies safely, says Hafler. But there are a few exceptions. They include:

• People with an active hepatitis B infection
• People who have had a life-threatening allergic reaction to a B-cell drug

Before you start any B-cell therapy, you should also make sure that you’re up to date on all your immunizations, says Riley Bove, MD, a neurologist at Weill Institute for Neurosciences in San Francisco. “We don’t recommend them during treatment, since your body may not mount as robust of an immune response,” she explains.

You also should not undergo B-cell therapy while you are pregnant, says Bove. “It appears that most patients maintain good disease control if they get an infusion right before and right after pregnancy, and there’s good safety data as well,” she explains. 

A recent study by Bove looked at over 3,000 people with multiple sclerosis during pregnancy. About a third had taken the B-cell therapy, ocrelizumab, while pregnant. “Less than 2% of live births had a congenital abnormality, which is about what we see among all pregnancies,” says Bove. 

Should You Worry About Cost?

B-cell therapies aren’t cheap. The list price of ocrelizumab is $78,858 a year. But most people won’t pay this amount if they have insurance. “Most insurance companies now cover B-cell therapies as a first-line drug,” says Hafler. 

Your out-of-pocket costs, however, depend on your insurance plan. If you have Medicare Part B and supplemental insurance (Medigap), for example, most, if not all of your costs will be covered. But with Medicare Advantage or commercial insurance, the costs depend on your plan and if you have hit your out-of-pocket maximum.

If your co-pays are expensive, many of the drug manufacturers offer assistance programs, says Hafler. You can ask your doctor to contact the insurance company on your behalf to get more information.