B-Cell Therapy: A Journey Worth Sharing
Exploring MS B-Cell Therapy Meaningful Discussions
MS B-Cell Therapy Discussions
Suppose a doctor has recommended B-cell therapy for you, a family member, or a close friend to treat multiple sclerosis (MS). Don’t fret! You’ve got good reason to feel optimistic. These medications have been like superhero sidekicks 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.”
What Is B-Cell Therapy?
Let’s dive into the intriguing world of B-cell therapy. B cells, the white blood cells rocking the bone marrow, are like your very own antibodies superheroes. They fight off viruses and bacteria like nobody’s business. Simply heroic!
But, (and there’s always a “but” in every superhero’s story), when B cells cross from your bloodstream into your brain and spinal cord, all mayhem breaks loose. They start attacking nerve cells, triggering MS. Talk about a superhero gone rogue! Not content with just that, these renegade B cells also cause inflammation. The nerve!
To counteract this villainous rebellion, the FDA has approved three medications for B-cell therapy: ocrelizumab (Ocrevus), ofatumumab (Kesimpta), and ublituximab-xiiy (Briumvi). These names sound like they were plucked straight from a secret laboratory, don’t they?
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Should You Expect Side Effects?
Now, here’s the lowdown on the possible side effects of this epic therapy. Sometimes, people with MS have a negative reaction to the infusion medications. It’s like their bodies throw a surprise superhero-themed party, but not the fun kind. Instead, they may experience some uninvited guests like a cough, fever, or chills. Swelling in their hands or feet might also make an appearance, along with red and itchy skin that itches for a fight. And, if their bodies weren’t dramatic enough, feeling faint or tired might quickly join the party. The nerve!
But wait, there’s more! The B-cell medications, like all superheroes, have their own set of side effects. Ocrelizumab might bring about hives, itching, or a skin rash, which is definitely not a fashion statement. Add to that a dash of nausea, a sprinkle of headache, a pinch of fever, and a generous helping of back pain or body aches. Ah, the glamorous life of a superhero!
Ofatumumab, on the other hand, can cause redness, pain, itching, or swelling where the needle goes in. Not the most pleasant experience, but remember, superheroes always triumph over pain!
Even ublituximab-xiiy has its own side effects like fever, chills, flu-like symptoms, and upper respiratory tract infections. Consider it the bittersweet sidekick of B-cell therapy.
But everyone is different, just like every superhero has their own unique superpowers. Brian Phillips of St. Louis, an active public speaker about living with MS since 1998, says his only reaction to ocrelizumab is mild fatigue the day after infusion. Ringstaff, on the other hand, 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. Superhero status achieved!
How Do You Start a Conversation?
Now, let’s talk about one of the most critical aspects of this journey: communication with your fellow sidekicks. As with any dynamic team, discussing B-cell therapy requires a well-planned strategy.
Ashley Ringstaff sat down with her husband and mother, both seasoned healthcare professionals, before starting ocrelizumab. She even included her older son in the discussion. Talk about assembling the Avengers! They evaluated the medication together, ensuring they considered Ringstaff’s comfort and what would work best for her. Superheroes need a support squad!
You too should choose the right moment to communicate openly with your loved ones. As Ringstaff explains, “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.” It’s all about building that solid foundation of trust and understanding.
Brian Phillips takes a different path, consulting his trusted neurologist (known as his superhero sensei) to make joint medication decisions. As he puts it, “If I needed their support, I absolutely would reach out.” Each superhero has their own way of tackling challenges!
When Should You Let Others Know?
Here comes a crucial scene: letting your workplace know about your B-cell therapy. Both Phillips and Ringstaff proactively shared this information with their employers right away. And boy, do they have some valuable advice for you!
Phillips, a part-time call center professional, ensures his employer is well aware of his situation. The bus becomes his superhero mode of transportation to work and infusion sessions. With his trusty disability payments due to being legally blind, he can power through life like a true superhero!
Ringstaff, working at a urology practice in Austin, was lucky to have a supportive boss. Her boss encouraged her not to come in if she felt too tired after the infusion. To avoid using sick days, she schedules her infusion appointments for the crack of dawn. She even works on her laptop during the session and jaunts off to work right after. Now that’s what we call dedication! She drives herself to and from appointments, like a superhero speeding through the city streets.
Should You Worry About Cost?
Time to talk money. Trust us, even superheroes can feel the weight of financial burdens. If you don’t have health insurance, the price tag of B-cell medications can make you wish you had a magic superpower to create money instantly.
Let’s break it down: Ocrelizumab’s price is mysteriously hidden due to its non-pharmacy availability. But hey, watch out for the annual list price, which can soar to over a staggering $68,000. Cue the dramatic music!
On the other hand, ofatumumab saves the day with a more reasonable online price of $6,932 per dosage. Rest assured, most private insurance plans, Medicare, and Medicaid have these drugs covered. Phew!
Still, co-pays can be tricky villains that sneak up on you. Ringstaff’s family often meets their health plan’s annual deductible from her sons’ sports injuries alone. Luckily, co-pays for her medication haven’t been an issue. Meanwhile, thanks to a Missouri pension law, Phillips qualifies for Medicaid because of his blindness. He covers his co-pays using those monthly payments. Superheroes finding clever ways to conquer any financial challenge!
For those not as fortunate, exploring co-pay assistance programs offered by drug manufacturers and organizations like the National Multiple Sclerosis Society is always a wise move. After all, superheroes find a way to triumph over obstacles!
Being Direct Is the Best Superpower!
As with any epic tale, honesty is the most potent superpower throughout your B-cell therapy journey. As her sons have grown older, Ringstaff finds it easier to be upfront with them. “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.” A superheroic support system at its finest!
So, fellow superheroes, remember to communicate openly, seek the support you need, and embrace the wondrous potential of B-cell therapy. Because when you’re armed with knowledge, surrounded by loved ones, and empowered with humor, no challenge will stand in the way of your heroic journey!
