My MS Medication Trail…

To understand how yesterday, September 20, was a key step in my MS treatment journey, allow me to take you back in time with me, where we’ll glance through the therapies I’ve experienced. When I was first diagnosed on July 30, 1997, T.R. and I shared with the doctor that we did want to start a family, so I’d like to wait a bit before starting a medication (the first two injectable therapies were just becoming available). I remember, then, an appointment at his Fort Wayne office in October 1998, and before he could share with me the suggestion of beginning a medication, we handed him a positive pregnancy test report. (We’d stopped at a doctor’s office to make certain.) Dr. Stevens shared the encouraging information that MS symptoms usually decrease during pregnancy, sometimes extra bursts of energy will even come! What I found, I’m afraid, is that the extra energy isn’t quite so likely when two little ones are growing… but I digress. Em and Rach were born June 8, 1999, and while I was nursing, MS symptoms  stayed in remission. When my body wasn’t able to keep up with the growing needs of these two little ones, I started using formula also, and this was the norm by Christmas.

So it was that in early January 2000, I started Avonex – interferon beta 1-a. The nice thing is that this medication only needed taken once a week – wonderful! Two negative things: one, it made me feel like I had the flu weekly; and two, I had to give it to myself via intramuscular injection (via a long needle). This is its own story, as my loving husband, who also hates needles, learned to administer this medication. And we gave it on Sunday night – while Monday became a day that my mother often came to help with two little ones while her daughter snapped back from side effects. (They say the side effects stop after a few months –  mine didn’t.)

After about three years, when MRI scans showed disease activity – and I was tired of feeling like I had the flu weekly – we decided to try a different injectable therapy, Copaxone – glatiramer acetate. This one was given with a much shorter needle, and it had a special autoinjector pen I could use, so I didn’t have to watch the needle as it did its job. It was a daily injection, but it had very few side effects. (Copaxone is now available as an injection only given three times a week – nice improvement there!)

After less than a year, though, symptoms and MRI scans were not encouraging, so we moved to injectable medication #3, Rebif – interferon beta 1-a again. Unlike Avonex, this interferon medication wasn’t injected with a 1” needle and didn’t have flu-like side effects. It was also not as effective as we wished.

So late 2004, I was asking Dr. Stevens what he thought we should do… there was something coming that he had read about and was watching. Until it was released, he thought Betaseron – interferon beta 1-b – would give us the best results. (At this time, I was not yet using a cane daily.) The medication he had been waiting for was available January 2005, and I was the first patient in Fort Wayne to take this new medication, natalizumab – only given once a month! But then we hit a snag. On February 28, I called to schedule my March infusion, and I was told there were complications… after a while on hold, they told me the FDA had just announced that this medication was pulled from the market. So back to Betaseron for another year and a half.

During that year and a half, the cane became a necessity. But that was okay. Monthly natalizumab did return to the market, now labeled as Tysabri. There were strict limitations on how it was given, blood tests to watch for really nasty things (that had caused it to be off the market for a year and a half), but I was a proud recipient of Tysabri for almost ten years!

I say “almost” because of a 3-month break. Summer 2013, Dr. Stevens and I wished to try a new treatment option, Tecfidera – dimethyl fumarate. Finally, just two pills a day, not a needle! And he legitimately thought it would be just as effective as Tysabri. But during those three months, I went from using a cane each day to being essentially required to use a walker. And that was the end of my “no more needles” time. So Tysabri re-entered my life, and my final Tysabri infusion was July 2017.

My MS has changed over the years – originally diagnosed as “relapsing-remitting,” Dr. Stevens now classifies it as “relapsing-progressive.” Progressive forms of MS have fewer treatments available, but this spring, a new one entered the field: Ocrevus – ocrelizumab.  News stories showed promising results, and though our goal is for this medication to help prevent further progression, I can’t help hoping for a smidgen of improvement. Yesterday, I had my first half dose, and the second half will come in two weeks. Then, I will receive this infusion once every six months.

What will it do? I don’t know. I can tell you that my only reaction was a bit of an itchiness and redness that was zapped with Benedryl. So it is that September 20, 2017, marked the first page in this chapter of my medical saga – time will tell what the other pages hold.

20 Years…

Twenty years is a long time – but sometimes, it seems like no time at all. Time is funny that way.

1997 was particularly significant for me in a number of ways. In late May, I cleaned out my middle school classroom for the last time, saying goodbye to a career that would take unexpected turns. We moved to a new town, and my husband was now much closer to his new job at Taylor University (as he had been commuting until I completed my school year… I had signed a contract, you know). In May, I also visited my eye doctor… who led me to another doctor and a diagnosis in June for probable multiple sclerosis. (Because we weren’t busy enough the first week in June, as we packed boxes to move four days later… but that’s another story.) The official diagnosis came on July 30 – yep, it was MS.

This part of the my own 1997 story took a step in August when I attended a concert of my favorite musician, Rich Mullins – the link here will lead you to a review of the concert I posted the next day. What I did not realize was that this, the final concert of his tour, would be the last of Rich’s performances I’d have the pleasure of seeing. Of the fifteen concerts of his I had attended, this was also the first one that led to tears. During “Bound to Come Some Trouble,” the floodgates let loose. Two weeks earlier, that diagnosis had come, and I really wasn’t certain what it would mean. (Attached is a clip of this song that somebody recorded at his Wisconsin concert on August 10, four days before I had my little tissue-soaking time.)

September 19 was a day like any other – I was a graduate student, commuting to Ball State for class and work during the day, and the phone call came from my younger brother that evening. I had been listening to Rich’s “Canticle of the Plains” as I could throughout the day, but now I stepped into our back yard, where I could lean against the towering oak and gaze at the stars. The lyrics of “Elijah” scurried through my head, as I teared up and wondered about that candlelight in Central Park, and what it would mean to say “Goodbye.”

So here we are twenty years later, and I still feel that my life as it is today has been enriched by the music and ministry of Richard Wayne Mullins. His songs still traipse through my head, and I’ll still be reading scripture and thinking, “So THAT’s the spot where that lyric originated!” But a huge smile came to my face last Sunday morning when our associate pastor was describing what his two-year-old son had been doing at breakfast. Music was playing, and the little fellow left his cereal at the table and felt he needed to dance before our Lord… we were told this was a Rich Mullins album that was playing. I have a feeling this would have made Rich smile. And I have no doubt that Rich’s music will continue touching countless more lives in years to come.

This year, my own story will instead mark September 20 as a significant point. As I begin new medical path for my MS treatment, a new chapter may begin in my own story. I’ll plan to listen to Rich’s music as I venture on – and I’ll post more about that tomorrow or Thursday. In the meantime, I’m thankful for the legacy of Rich Mullins on this day in particular.