Talking About B-Cell Therapy for Your MS
Suppose a doctor has recommended B-cell therapy for you, or for a family member or close friend, to treat multiple sclerosis (MS). You’ve got good reason to feel optimistic. These medications have been helpful in avoiding MS relapses and easing symptoms. It’s a good idea to share that optimism with your loved ones. Just also remember to talk honestly about the realities of B-cell therapy, and don’t be shy if you need support.
“When I was first diagnosed in 2009, I was very stubborn and wanted to do everything by myself because it seemed like MS already had taken so much of my independence from me,” says Ashley Ringstaff, who lives just north of Austin, TX. “But I’ve learned that asking for support really doesn’t affect my sense of independence.”
When you’re thinking about talking to those you’ve chosen to share in your B-cell therapy journey, there are many topics to consider. The risks and possible side effects of B-cell therapy are usually manageable. But they can become painful or serious. Medications should be covered by private insurance, Medicare, or Medicaid but are extremely expensive. You probably can get yourself to appointments (where drugs are put directly into your bloodstream or just under your skin), but you may want a driver for the first couple of sessions. These are just a few of the good reasons to hold nothing back from your support group and employer.
What Is B-Cell Therapy?
B cells are white blood cells produced in your bone marrow that make antibodies — proteins that fight viruses and bacteria. That’s helpful, but if B cells cross from your blood into your brain and spinal cord, they can attack nerve cells and trigger MS. B cells also cause inflammation.
The FDA has approved two medications for B-cell therapy: ocrelizumab (Ocrevus) and ofatumumab (Kesimpta). You take ocrelizumab at an infusion session (usually at a clinic), starting with two appointments within 2 weeks and then every 6 months. Sessions until recently lasted 3-4 hours, but the FDA said in 2020 they can be shortened to 2 hours. A doctor can show you how to give yourself an ofatumumab shot at home, starting with three shots over 2 weeks and then monthly.
Should You Expect Side Effects?
Sometimes, people with MS have a negative reaction to infusion medications. They may get a cough, fever, or chills, swelling in their hands or feet, red and itchy skin, or feel faint or tired. You should tell a doctor right away if you get any of these symptoms. People who take ofatumumab may get redness, pain, itching, or swelling where the needle goes in.
Also, the B-cell medications can produce various side effects. With ocrelizumab, just a few of these commonly include:
- Hives, itching, or skin rash
- Back pain or body aches
- Blurred vision
Ofatumumab also has a long list of side effects for which you should call a doctor right away. A few of them are:
- Muscle pain
But everyone is different. Brian Phillips of St. Louis, who was diagnosed in 1998 and is an active public speaker about living with MS, says his only reaction to ocrelizumab is mild fatigue the day after infusion. Ringstaff says she feels “a bit awake and wired” from taking Benadryl at the start of infusion and then gets a little tired after receiving ocrelizumab. “Other than that, no side effects, and I don’t get sick,” she says.
How Do You Start a Conversation?
But neither of them could be certain B-cell therapy would go so smoothly before they started. As she had other times when she changed MS medications, Ringstaff had a sit-down in 2017 with her husband (a former EMT) and mother (a former RN) before starting with ocrelizumab. She also included the older of her two sons (now 15).
“We were evaluating the medication, and I wanted to talk about what will work best with me and what I’m most comfortable with,” she says. “You have to do what is best for you, but you also need to take their feelings into account.
“I needed support from my family, for them to be knowledgeable, because I do get fatigued. You can tell when I am coming up on my infusion date and needing it. Then, and right after infusion, they don’t expect me to have a full energy plate to do the things I normally do. I do crash by the end of the day.”
Phillips takes a different path that works for him. “My wife, family, and friends are there if I need them,” he says. “If I needed their support, I absolutely would reach out.” But Phillips prefers to have a detailed talk with his neurologist, whom he trusts very much, and make a joint decision with her on medication.
“I know some people don’t tolerate Ocrevus very well,” he says. “But for me, if you compare this to when I was on other medication and getting an injection every other day, this is cake in comparison.”
When Should You Let Work Know?
Both Phillips and Ringstaff talked with their employers right away when they started B-cell therapy. They suggest others do the same. Phillips works part-time in a call center. He gets disability payments because he is legally blind. He takes a bus to work and to infusion sessions.
Ringstaff’s boss at a urology practice in Austin was supportive and told her not to come in if she was too tired after infusion. But she usually schedules infusion appointments for 7:30 a.m., works on her laptop in the chair, and goes to work right after to avoid taking sick days. She drives herself to and from appointments.
Should You Worry About Cost?
If you don’t have health insurance, the price tag of B-cell medications can be a topic that you wouldn’t want to keep to yourself.
Ocrelizumab is not priced online because you can’t get it from a pharmacy. The manufacturer’s website says the annual list price can be more than $68,000. The low online price for ofatumumab is $6,932 per dosage. Fortunately, most private insurance plans, Medicare, and Medicaid cover these drugs.
But that still leaves co-pays, which can really add up. Lately, Ringstaff’s family already meets their health plan’s annual deductible just from her sons’ sports injuries. So co-pays for her medication haven’t been an issue. Even though Phillips gets health coverage through his wife’s plan, a Missouri pension law qualifies him for Medicaid because of his blindness. He covers co-pays with those monthly payments.
For people with MS who aren’t as fortunate, it’s always a good idea to look into whether the medication manufacturer offers co-pay assistance. Also, the National Multiple Sclerosis Society lists a number of patient financial assistance programs on its website.
Being Direct Is the Best Approach
As with any medical treatment, being totally open with your family and friends about the potential benefits, and possible difficulties, with B-cell therapy is the right way to go. As her sons have gotten older, Ringstaff has found it easier be up-front.
“They know I’m doing a lot better with MS than I was years ago, but they also know to expect the unexpected,” she says. “A lot of outside elements can affect me as well. They’re very understanding and will be my rock when I need them.”
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