Treatment

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.

6 thoughts on “Treatment

  1. My goodness this was an absolutely AMAZING post with great information! I have had MS for almost 18 years and been through so much in that time. I have tried several different types of medications and some just were not for me. I was really bad at doing injections myself and one infusion made me sick for days. Last year I decided to stop taking the Gilenya I had been on for 6 years and try Tecfidera. It was a bad move on my part because the Tecfidera was not strong enough. My doctor did recommend Ocrevus to me, but I decided to go back on Gilenya. I do believe that insurance in the US is more than terrible!!!! I really hope everything works well for you and the Ocrevus! Stay strong and do what you think is best for you and please know that I am here for you!! Us MS Fighters need to stick together!

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    1. Thank you, Alyssa! Gilenya’s side effects scared me away, and I don’t have confidence in any of the pills. I think we’re getting closer to a therapy that will work with both B cells and T cells, and I’m waiting for it with anticipation. Until then, I’m looking forward to trying Ocrevus. I know it’s a nuclear option, but my aunt’s MS progressed very quickly, and I’ll do anything to hold it off for as long as I can. If it doesn’t work out, I can always go back to one of the other options that my insurance will pay for. Until then, thank goodness for an MS clinic that knows all the ways to work around the system. I hope you’re feeling better–keep up the good work!

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      1. I completely understand the side effects of Gilenya being a little scary, I was terrified of them! I honestly have not had anything bad happen. When I first started on it my WBC dropped to a dangerous level, so we had to adjust the dosage. It is amazing how everyone tolerates medications so differently. I was so afraid of progression and I do not want to be in a wheelchair, but I am overall doing okay. I just deal with constant pain and migraines, but I guess it could be worse! How long has your aunt had MS? You know your body better than anyone else and will make the best decisions based on that. You are pretty incredible!!!

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      2. I’m glad you haven’t had issues with the side effects; MS patients really do respond to meds very differently. So far, my pain is manageable, but I am still pretty new to it all.

        Unfortunately, my aunt passed because of MS a couple of years ago, just aged 61. She had been diagnosed for about 20 years at that point but probably had it longer. It was too far gone by the time more effective remedies became available, sadly.

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      3. Yes, all MS patients definitely respond differently as all our chemistry is so different! I am SO glad your pain is manageable and really hope it stays that way. Do you mind me asking, what was the first symptom of MS you had? You were diagnosed in January, right?

        I am so sorry your aunt passed because of MS. Was there anything else involved or was it completely due to the MS? I am sorry to ask questions because I do not want to upset you.

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  2. My first sign was optic neuritis in January, but 20 years ago I had migraines in that eye that I saw a neuro-opthamologist for that may have been related. I also had an issue last year with severe arm weakness that lasted for a week, but I thought it was due to a medication change. I wasn’t diagnosed until last month after my relapse and spinal tap. Such a journey! I’m impatiently waiting for the pieces to fall into place to start treatment.

    My aunt’s death was entirely due to MS, aspiration in the end.The ten years before it were increasingly debilitating for her, the disease aggressive and unrelenting. No one deserves it, least of all her. ❤

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