After 31 Years It’s Time to Re-Evaluate & Make Changes in My MS Care

This week I spent a good deal of time leafing through news articles, perusing medical journals, and scouring the Internet for trends about MS. I don’t know why I’m so indecisive about what to write next. Or maybe I do.

What I really want to write is what’s in my heart. It’s about being tired of it all.

I’ve been injecting disease-modifying medication for over twenty years. I was diagnosed several years before approved medications were available for MS, so I jumped for joy when the first one came on the market. The naive me thought the new medication would solve my MS problems. I went from reconstituting Betaseron to having a neighbor (a nurse) inject an intramuscular needle of Avonex once a week to injecting seven days a week with Copaxone and finally injecting their three times a week option. If I were a math whiz I’d figure out how many needles I’ve injected since 1996. I’ve experienced chest pain, bruising, stomach pain, flushing, stinging, dizziness, and one unfortunate necrosis that required a visit to the ER. I also have permanent indentations on my stomach and thighs.

A long road

Since my diagnosis, I’ve been to seven different neurologists, one for twenty-two years. When I moved far from her I went to a neurologist who never took me seriously, never looked at me when I spoke and cut me off when he said my time was up. Now that I found a neurologist I am happy with, one who takes the time to talk to me and is an excellent listener. Guess what? She’s moving this fall to a new MS Center. I’m so tired of needles and frustrated about the need to find a doctor I can trust.

So here I am, closing in on sixty and living with an unpredictable, incurable and maddening disease for thirty-one years. I’m exhausted. Maybe it has to do with age or the fact that I don’t have the same amount of energy or vitality that I used to have. The fight to stay healthy and search for a new doctor who’ll look and listen to me as a whole person is draining me. For someone who deeply believes in faith, hope, joy, being mindful and counting our blessings, that last sentence was a difficult one to admit. But there you have it.  

When I was first diagnosed my father made me promise not to enroll in any clinical trials. A scholar on most subjects, he also urged me to always remain vigilant about researching MS to help me stay on top of current trends and advancements. It must have been unimaginable for my parents to watch their child struggle with an unknown disease, so I promised him. Today I know the importance of clinical trials – where would we be without them – but back then I was admittedly afraid of them.

Difficult decisions

So here I am walking on a path of indecision. Do I continue using Copaxone or take a chance with a medication that’s not an injectable? And is there a doctor near me who believes in treating the whole person, who will listen to my questions and concerns and is well aware of current research and trends? I’m taking a look at the newest MS drug on the market, Ocrevus, a twice a year infusion (except the first dose which is split into two doses given two weeks apart.) My first concern is about safety and side effects, and since statistics for this probably won’t be available for awhile I’m concerned about the risks. (Studies assessing long-term safety are underway.) I’ve read positive news about Ocrevus that occurred during clinical trials. MRI scans revealed a decrease in brain lesion volume and walking tests demonstrated a positive difference for many patients. It also showed dramatic percentages in reducing relapse rates and the risk of disability progression in relapsing patients. Results for efficacy were also shown in secondary-progressive MS, similar to results for RRMS, although Genentech has not released that data yet. I’m looking for more data about the relationship between Ocrevus and cancer, particularly breast cancer, which Genentech said was within the norm for the population but is still something I need to look into. There’s also the relationship between Ocrevus and PML which requires further investigation. Another consideration is affordability. The drug currently costs the exorbitant price of $65,000 a year. Will my insurance company pay for it? Will Genentech’s patient assistance program be helpful?

I have two decisions before me and after three decades of MS I’m worn out thinking about them. Yes, Dad, I’ll do my research. I always do. But whoever thought the need to continue doing it would wear me down. But that’s life, I guess, with all its imperfections and annoyances. I’ll have to jump into the game in the name of good health.

So here I go again. One more time.

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