B-cell therapy for MS: what to share

Let’s say your doctor has recommended B-cell therapy to you, or a close family member or friend, to treat multiple sclerosis (MS). You have good reason to be optimistic. These medications have been helpful in avoiding relapses of MS and relieving symptoms. It is good to share this optimism with your loved ones. Just remember to also speak honestly about the facts 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 myself because it seemed like my MS had really taken away a lot of my independence from me,” says Ashley Ringstaff, who lives north of Austin, Texas. “But I’ve learned that really asking for support doesn’t affect my sense of independence.”

When you consider talking to those you have chosen to share your B-cell therapy journey with, there are many topics to consider. The risks and potential side effects of B-cell therapy are usually manageable. But it can become painful or dangerous. Medicines must be covered by private insurance, Medicare, or Medicaid but they are expensive. You can most likely schedule appointments (where medications are placed directly into the bloodstream or just under the skin), but you may want to get a driver for the first two courses. These are just a few of the good reasons not to withhold anything from your support group and employer.

What is B cell therapy?

B cells are white blood cells produced in the bone marrow that make antibodies – proteins that fight viruses and bacteria. This is helpful, but if B cells from your blood cross into your brain and spinal cord, they can attack nerve cells and cause MS. B cells also cause inflammation.

The U.S. Food and Drug Administration has approved two types of drugs to treat B cells: ocrelizumab (Ocrevus) and ofatumab (Kysimpta). You take ocrelizumab in one infusion session (usually in the clinic), starting with two appointments in 2 weeks and then every 6 months. Sessions until recently lasted 3 to 4 hours, but the Food and Drug Administration said in 2020 they could be shortened to 2 hours. Your doctor can show you how to give yourself an ofatumab injection at home, starting with three shots over two weeks and then monthly.

Should you expect side effects?

Sometimes people with MS have an adverse reaction to infusion medications. They may have a cough, fever or chills, swelling in their hands or feet, red and itchy skin, or feel faint or tired. You should tell your doctor immediately if you develop any of these symptoms. People taking ofatumumab may have redness, pain, itching, or swelling where the needle was inserted.

How do you start a conversation?

But neither can be certain that B-cell therapy will run smoothly before it begins. Since she had other times when she changed MS medications, Ringstaff had a sitting in 2017 with her husband (former EMT doctor) and mother (former RN) before starting ocrelizumab. It also included her two eldest sons (now 15 years old).

“We were evaluating the medication, and I wanted to talk about what works best for me and what I feel most comfortable with,” she says. “You have to do what is best for you, but you also have to take their feelings into account.

“I needed support from my family, so they would be aware, because I feel overwhelmed. You can tell when I’m going to be on my infusion date and I need it. Then, right after the infusion, they don’t expect me to have a full power board to do the things I normally do. I I don’t crash at the end of the day.”

Phillips takes a different path to his liking. “My wife, family and friends are there if you need them,” he says. “If you need their support, I will totally reach out to you.” But Phillips prefers to have a detailed conversation with his neurologist, whom he trusts very much, and to make a joint decision with her about medication.

“I know some people don’t tolerate Ocrevus very well,” he says. “But for me, if you compare that to when I’ve been taking other medications and taking an injection every other day, that’s a cake by comparison.”

When should you let the business know?

Both Phillips and Ringstaff spoke with their employers right away when they started B-cell therapy. They suggest that others do the same. Phillips works part-time in a call center. He gets disability payments because he is legally blind. He takes the bus to work and to infusion sessions.

The chief of Ringstaff at the urology clinic in Austin was supportive of her and asked her not to come if she was too tired after the infusion. But she usually schedules her injections at 7:30 a.m., works on her laptop in the chair, and goes to work right afterward to avoid taking sick days. She drives herself to and from appointments.

Should you worry about the cost?

If you don’t have health insurance, the price of B-cell drugs can be a topic you don’t want to keep to yourself.

Ocrelizumab is not priced online because you cannot get it from a pharmacy. The manufacturer’s website says the annual list price can be more than $68,000. The online low price of ofatumumab is $6932 per dose. Fortunately, most private insurance plans, Medicare, and Medicaid cover these drugs.

But that still leaves out joint payments, which can already add up. Recently, the Ringstaff family is already fulfilling their annual health plan deduction from sports injuries for their sons. So co-paying for the drugs was not a problem. Although Phillips gets health coverage through his wife’s plan, the Missouri Pensions Act qualifies him for Medicaid because of his blindness. It covers the co-payments with those monthly payments.

For people with unlucky MS, it’s always a good idea to consider whether the drug manufacturer offers co-payment assistance. The National MS Society also lists a number of patient financial assistance programs on its website.

Being direct is the best approach

As with any medical treatment, being completely open with your family and friends about the potential benefits and potential difficulties with B cell therapy is the right way to go. As her sons got older, Ringstaff found it easier to be ahead.

“They know I’m better off with MS than I did years ago, but they also know to expect the unexpected,” she says. “A lot of external elements can affect me as well. They are very understanding and will be my rock when I need them.”