From the moment I suspected I had multiple sclerosis back in January, I began researching treatment options. Many people have asked me if I’ve looked into stem cell therapies, especially after seeing videos on social media outlets about how stem cells can help put MS into permanent remission. Sounds good, right? Well, those hopeful clips don’t usually provide all of the details. The most discussed stem cell treatment for MS is the hematopoietic stem cell transplant (HSCT), a process that has limited availability in the US and doesn’t follow a standardized protocol where it is available internationally. Clinical trials continue in Chicago at Northwestern with the famous Dr. Burt (famous in MS and autoimmune disease research anyway). HSCT involves harvesting a patient’s stem cells and saving them while the patient undergoes chemotherapy to reset the immune system, after which the original cells are reintroduced to build up a new immune system. It is an arduous process with a long recovery, minimum of 3-6 months, but the success stories are impressive. There are a number of people who credit it with giving them their lives back.
I’m not brave enough or desperate enough yet to seriously consider HSCT. Besides that, health insurance plans won’t pay for it. My insurance even denied coverage for the FDA-approved treatment I’ve selected because of its policy that I should have to fail on two lesser medications first, which will do more irreversible damage to my body. I won’t go too far into my rant about insurance here, but one thing I’m sure of is the insurance company should not get a vote about a patient’s treatment; that should be a decision between patient and doctor alone. Fortunately, my doctor’s office is confident I can be enrolled in a free drug program for the treatment I want, but the details are still being worked out.
Most people with MS who choose to treat it with drugs select from three categories of medication: pills taken orally, self injections, and infusion therapies. Each has side effects, of course, and they vary depending on the category. All of these medications work toward slowing the progress of the disease and reducing demyelinating events. Myelin is the substance that covers and protects our nerve fibers, and it is destroyed when our T cells are activated and turn against the central nervous system, causing MS symptoms. When myelin is lost, it is lost for good. No MS treatment can fix myelin loss; medications can only prevent or slow further attacks.
The treatments shown to be most effective in slowing progression of RRMS are the infusion therapies, and the one I chose, Ocrevus, is the most recently approved infusion therapy for MS and the only one approved for primary progressive MS. Unlike other medications that directly target the T cells causing exacerbations, Ocrevus targets the CD20-positive B cells, which are responsible for getting the T cells fired up, leading to inflammation and eventual myelin damage. B cells make antibodies to respond to attacks on our system, often from illness and infection, but when our T cells turn on the central nervous system itself as in MS, they’re triggered by CD20-positive B cells. Killing off those B cells makes the T cells less aggressive, and Ocrevus has shown great promise in reducing relapses and formation of new lesions.
Depleting B cells, of course, means that the system is less capable of fighting off infection, which is why I had to receive pneumonia and shingles vaccines before starting. I also have to get a baseline mammogram next week because Ocrevus may slightly increase risk for breast cancer. As it is a newer therapy, additional side effects are unknown, though commonly reported ones are respiratory infections and back pain. I’m part of a Facebook group where people talk about their experiences with Ocrevus, and some report that they feel better, while others report that they feel worse. This is true of all MS medications, but I’m hopeful about what it can do for me. Another attractive feature of Ocrevus is that after the initial dose is infused in two halves separated by two weeks, it is infused every six months instead of monthly like another popular infusion therapy, Tysabri. Pills usually need to be taken daily and the self-injected medications often 3-4 times each week.
I can feel MS changing my body every day, and I remain discouraged by how quickly it is progressing. I can’t walk as far as I did just a few months ago because my legs quickly become numb and unstable. I have numbness and tingling almost constantly, especially in my hands and feet. My relapse that affected my walking was most eye-opening, showing me how very debilitating I can expect MS to be. I want to be as aggressive in my treatment as possible, though that’s not necessary for everyone with MS, and I’m not claiming that Ocrevus is the best choice for anyone but myself.
After Ocrevus, I expect that I’ll feel generally poor while my B cells are depleted in the first few weeks. Common reactions include flu-like symptoms, but I’m prepared for those, just hoping to get the first two doses out of the way before I return to full-time work at the end of August. Waiting and hoping not to have another attack in the meantime is still the most difficult part.