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What It Takes to Be an MS Pioneer
Was it bravery or desperation that got me to line up to try the earliest MS disease-modifying therapy? By Mona SenFor My Health StoryReviewed: April 21, 2022Everyday Health BlogsFact-CheckedHope is a strong motivator to try something new, even something scary.Maria Ponomariova/iStockI was diagnosed with multiple sclerosis (MS) in the 1980s at the age of 20. First of all, I had to figure out what to do with my life following this heavy diagnosis, and then I had to figure out how to treat myself. At the time, MS was still back in the dark ages, with no treatments to speak of except corticosteroids. Steroids always facilitated healing, made me feel invincible, and made whatever MS symptom was bothering me recede. But steroids were a Band-Aid solution, because every time I took them, they took something from me, namely calcium from my bones. Once the healing and the elation wore off, I was left with side effects and, ultimately, brittle bones. So taking steroids was at my own peril! They did bring most of my eyesight back after I experienced the horrible effects of optic neuritis when I was barely 21. But I still don't call that a comfortable solution, just a necessary one. At the time, I was young enough and traumatized enough to do anything possible to help my MS. Entering the Lottery for Betaseron
One day in the 1990s, a pharmaceutical company took out full-page ad in The New York Times, advertising a brand-new therapy for multiple sclerosis. I was thrilled to see this, and my parents were more thrilled. After all, this was not an everyday occurrence. The treatment turned out to be something known as Betaseron, or interferon beta-1b, the first disease-modifying therapy to receive U.S. Food and Drug Administration (FDA) approval for the long-term treatment of MS. What makes this story even more incredible is that all of us who wanted to try the drug had to enter a lottery. I had to wait a year before I received this medication, which was a subcutaneous injection taken once every other day. Wow, injecting myself — what a concept. But self-injection was anything but novel, because so many of our MS treatments use injections. Now, I always choose an oral tablet if possible to avoid injections. I Was Warned About Side Effects but I Was Fighting for My Life
The full-page ad for Betaseron caused all kinds of flurry in the medical and patient world. None of us had seen this done before. But I didn't even bat an eyelash; the thought of not trying to get the drug never occurred to me. So essentially, I became a guinea pig for the pharmaceutical companies and the medical world. My feelings now would be very different from back then. I might actually sit down and think about the pros and cons of this treatment. At the time, I remember my doctor, who was also a friend, trying to warn me about some of the side effects of Betaseron. but I wasn’t interested. Maybe I should have listened to my doctor, because the side effects were notable and made me miserable for years. But it was already in my head that I was going to take this medication at any cost. A full-page ad in the Times — how could I not do this? This was the thinking of a 20-year-old, fighting for her life. Had I waited, I would likely have taken one of the other disease-modifying therapies that followed Betaseron. But at the time, I didn’t think I had time to wait. Wild horses could not have dragged me away from my decision. After a Long Break I m Excited About an MS Medication Again
The undesirable side effects of Betaseron turned me off from taking any MS disease-modifying medication for several years, but I recently started taking teriflunomide (Aubagio), a once-a-day oral pill. I was scared enough from relentless MS progression to try again. But now the MS world is now buzzing about something that appeals to me, called BTK blockers. These proteins, known as Bruton’s tyrosine kinase (BTK) blockers block the activity of immune cells, the ones that attack me and cause relentless disability, particularly B cells. I think this is the most exciting discovery in the MS world. The best part is that these proteins can cross the blood-brain barrier and target immune cells in the central nervous system. My own neurologist went as far as to say it might stop progression. Am I on the cusp of something like a cure, possibly in my lifetime? Could these drugs make my life a little easier at the end, so I don’t have to dread the possible end stages with multiple sclerosis? I am trying hard to put the brakes on my enthusiasm. Anything can go wrong, and I don’t want to jinx this, but I am still a pioneer! So I have to wait a year and a half for the FDA to allow BTKs to come to market. This is something I could only dream about, and in a year and a half, it could be real! Important: The views and opinions expressed in this article are those of the author and not Everyday Health.See More NEWSLETTERS Sign up for our Multiple Sclerosis Newsletter
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