B cell therapy for MS: what to share

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Suppose a doctor has recommended B-cell therapy to treat multiple sclerosis (MS) for you or a family member or close friend. You have good reason to be optimistic. These drugs have been helpful in preventing MS flare-ups and relieving symptoms. It’s a good idea to share this optimism with your loved ones. Also, remember to be honest 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 on my own because it seemed like MS had already taken away so much of my independence,” says Ashley Ringstaff, who lives north of Austin, TX . “But I’ve learned that asking for support really doesn’t compromise my sense of independence.”

As you think about speaking to those you’ve chosen to share your B cell therapy journey with, there are many issues to consider. The risks and possible side effects of B cell therapy are usually manageable. But they can become painful or severe. Medications should be covered by private insurance, Medicare, or Medicaid, but they are extremely expensive. You can probably take yourself to appointments (where medication is put directly into your bloodstream or just under your skin), but you may want a driver for the first few sessions. These are just some of the good reasons not to hold back anything from your support group and your employer.

What is B cell therapy?

B cells are white blood cells made in your bone marrow that produce antibodies – proteins that fight viruses and bacteria. This is helpful, but when B cells from your blood get into your brain and spinal cord, they can attack nerve cells and trigger MS. B cells also cause inflammation.

The FDA has approved two drugs for B-cell therapy: ocrelizumab (Ocrevus) and ofatumumab (Kesimpta). You will take ocrelizumab at one infusion session (usually in a clinic), starting with two appointments within 2 weeks and then every 6 months. Sessions lasted 3-4 hours until recently, but the FDA said they may be reduced to 2 hours in 2020. 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 react negatively to IV drugs. You may develop a cough, fever or chills, swelling of your hands or feet, red and itchy skin, or feel weak or tired. You should tell a doctor right away if you notice any of these symptoms. People taking ofatumumab may experience redness, pain, itching, or swelling where the needle is inserted.

B-cell drugs can also cause various side effects. For ocrelizumab, just a few of these in general are:

  • hives, itching or rash
  • nausea
  • headache
  • Fever
  • back pain or body aches
  • Blurred vision

Ofatumumab also has a long list of side effects for which you should seek immediate medical attention. Some of them are:

  • Fever
  • headache
  • Muscle aches
  • chills
  • fatigue

But everyone is different. Brian Phillips of St. Louis, who was diagnosed in 1998 and is an active speaker about living with MS, says his only reaction to ocrelizumab is mild fatigue the day after the infusion. Ringstaff says she feels “a little bit awake and wired” from taking Benadryl at the start of the IV and then gets a little tired after receiving ocrelizumab. “Otherwise no side effects and I don’t get sick,” she says.

How do you start a conversation?

But none of them could be sure that the B cell therapy would go so smoothly before they got started. As with other times when she switched MS meds, Ringstaff met with her husband (a former paramedic) and mother (a former nurse) in 2017 before starting ocrelizumab. She also included the older of her two sons (now 15).

“We were evaluating the medications and I wanted to talk about what works best for me and what I’m most comfortable with,” she says. “You have to do what’s best for you, but you also have to consider her feelings.

“I needed support from my family to get their bearings because I get tired. You can tell when I’ll be there for my IV appointment and need it. Then, and right after the infusion, they don’t expect me to have a full energy plate to do the things I normally do. I fall at the end of the day.”

Phillips takes a different route that works for him. “My wife, family and friends are there when I need them,” he says. “If I needed their support, I would definitely reach out.” But Phillips prefers to have an extensive discussion with his neurologist, whom he trusts very much, and decide on medication together with her.

“I know some people don’t take Ocrevus very well,” he says. “But for me, if you compare that to when I was on other meds and getting an injection every other day, that’s a pie by comparison.”

When should you inform the work?

Both Phillips and Ringstaff spoke to their employers as soon as they started B-cell therapy. They suggest others to do the same. Phillips works part-time in a call center. He gets disability benefits because he’s legally blind. He takes the bus to work and for IVs.

Ringstaff’s boss at an Austin urology practice supported her and told her not to come if she was too tired after the IV. But she usually schedules IV appointments for 7:30 am, works on her laptop in the chair, and goes to work right after to avoid sick days. She drives to and from appointments herself.

Should you be concerned about the cost?

If you don’t have health insurance, the price of B-cell drugs may be an issue you don’t want to keep to yourself.

Ocrelizumab does not have an online price because you cannot get it in a pharmacy. The manufacturer’s website states that the annual list price can exceed $68,000. The online low price of ofatumumab is $6,932 per dosage. Fortunately, most private insurance plans, Medicare, and Medicaid cover these drugs.

But that still leaves co-pays that can really add up. Lately, Ringstaff’s family is already meeting their yearly health plan deductible just from their sons’ sports injuries. Co-payments for her medication were therefore not a problem. Although Phillips receives health insurance through his wife’s plan, a Missouri pension law qualifies him for Medicaid because of his blindness. It covers co-payments with these monthly payments.

For people with MS who aren’t so lucky, it’s always a good idea to check if the drug manufacturer offers a co-payment. 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, the right way to go about B-cell therapy is to be completely open with your family and friends about the potential benefits and potential difficulties. As her sons have aged, Ringstaff finds it easier to be open.

“They know I’m much better with MS than I was years ago, but they also know to expect the unexpected,” she says. “Many external elements can also influence me. They are very understanding and will be my rock when I need them.”


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B cell therapy for MS: what to share
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