Our Journey Into The World of MS Drugs
Treating MS for us has probably been very typical: 50% addressing symptoms, 50% a calculated choreographed battle against Chris’s own immune system (ornery cat) hellbent on attacking his central nervous system (chewing on his important cables.) The drugs available for us to fight this battle are like a giant all you can eat buffet. If the buffet was full of food that would make you sick, make your heart stop, had to be administered via needle, or required you eat it in the hospital.
That sounds worse than it is. These days there are a lot of options that most people tolerate fairly well. The first thing we discussed with our doctor in terms of medications was the main goal: minimize relapses, reduce the progression of the disease. There were many drugs available at the time of his diagnosis. In our research, a few had caught our eye. Avonex seemed to be the most commonly prescribed at the time. It is a weekly intramuscular injection approved for treating MS in the late 90's, so there is a lot of data about its effectiveness. Side effects are minor, flu-like symptoms being the most common one. We had also heard of a newer drug which Chris wanted to talk to our neurologist about, called Gilenya. It had been approved in 2010 for treatment of RRMS, and works in a different way than an interferon like Avonex. It appealed to Chris because it was a once daily pill. He was not keen to use the needles. However Gilenya has some serious possible side effects for people who have had heartbeat irregularities, which Chris has experienced in the past. It sometimes requires that you are monitored overnight in a hospital for your first dose, as it can cause your heart rate to slow down significantly. Our heads were swimming with drug brand names (most of the newer drugs have no generics yet,) side effects, insurance co-pays, horror stories, disappointing results, no golden bullet.
In the end, our neurologist recommended Tecfidera. It is a twice a day oral medication, which he believed Chris would tolerate better. With drugs that you need to take consistently, possibly forever, it matters that the patient have positive experiences with administration. Tecfidera was only approved as first-line medication in the US 4 months before Chris was diagnosed. This meant our insurance provider through my employer had to cover it. Which was lucky, as the wholesale cost of the drug is nearly 55,000 USD per year. The main side effects of this drug are flushing and stomach issues, both of which Chris experiences mildly, although much more severely in the first 3 months. I can also report that now, 18 months on Tecfidera, Chris’s MRI’s continue to be stable, no new lesions, no relapses, and only mild exacerbations.
Treating the symptoms of MS is a whole other kettle of fish. The symptoms vary so much amongst patients that there is actually some creativity involved in the part of your doctor, and some trial and error. You also have to think about what you can live with, and what you can’t, especially in he beginning. We started out with physical therapy. A local MS clinician employed electrical nerve stimulation, meant to activate different neural pathways to his hand to supplement the disrupted ones. He also worked with Chris on his walking and balance. Chris continues to use those exercises regularly, and they keep him active and his body strong. He was also prescribed Gabapentin, a nerve pain medication for his arm. He found it unsustainable because of the drowsiness it caused, so his doctor switched him to medicinal marijuana. Pot. Weed. What have you. Did I mention the ganja? I want to speak more broadly about our experience with the process of joining the New Jersey Medicinal Marijuana Program, but I have found myself getting distracted and hungry. So I will leave that for another story.
