Choosing a disease modifying drug: Maria’s story

Maria was diagnosed with relapsing remitting MS last June. Here she shares her experience of choosing a disease modifying drug. "It’s scary being asked to make such a massive decision, so if you do feel afraid, that’s normal," Maria tells us. 

6 weeks to go, I’ve just come back from the MRI with contrast and had some blood tests done. I need to peel the tape off both arms. Or should I rip?

The countdown has begun. When did it actually begin? When I was first diagnosed? Before I was diagnosed but had numb tingling feet? Or before that; when my blood cells, my own immune system that is supposed to defend me, started attacking me behind the scenes quietly without anyone noticing? There’s enough haters in this world, don’t hate on yourself!

It’s countdown to treatment day. I’ve made my decision. We’re just limbering up and getting everything set. Excuse me while I get a cup of tea and a well-earned biscuit. It’s tough keeping still for so long. I started singing 12 days of Christmas in my head reeaallllyy slowwwlyy to take my mind off my dead shoulder.

Do you feel empowered when you’ve made a decision? You’ve taken control of the situation and are doing something about it right!? For me, I get food envy at restaurants whenever I go out for a meal; eyeing up my husband’s choice and altruistically offering to share, when really all I’m bothered about is missing out on a better tasting meal. So making the choice of disease modifying drug (DMD) was not easy.

What if I don’t like it? What if it doesn’t like me? What if I make the wrong choice?

My MS nurse, Claire was very helpful, explaining all the specials on the board and what sides they came with. But ultimately I had to choose.

But I find that each appointment is so crammed full of information and I’m a deep thinker. I like to go away and process information, research some scientific articles, and check other people’s opinion and experiences. I like to procrastinate and worry about every eventuality.

This is where my mind went into overdrive with trying to factor everything in my life. Work, family support, monitoring, types of side effects, frequency of top-ups. Even my husband being numero uno champion was baffled.

Am I a risk taker or a dip your toe in the water kinda person?

The answer is still unknown to even the world leading experts, but things have improved over the years. Even if I buy myself a bit more time and slow down the damage I can’t see, it gives those scientific geniuses a few more years to find another new improved treatment further down the line.

I fired off emails to Claire as more questions popped into my head, she diligently replied. She even rang up.

I then emailed and told her my choice and explained why, giving her the chance to tell me if my research was wrong.

When I posted for advice on FB, I found others in the same state of confusion. I was advised to check the MS Decisions tool which gives a handy comparison. I then dug deeper to make sure I had all the facts. I wanted to know.

So I’m going for Ocrevus because it’s the newest and a hard hitter. A ‘highly effective treatment.’ It compares really well to the other big guns out there. But I did feel a bit cowardly not going for Lemtrada. That was the WMD of DMD's Claire said to me. But I just couldn’t do it. There seemed to be too many risks of side effects I wasn’t prepared to chance. Four years of monitoring monthly too.

Tysabri sounded like a good one but monthly hospital trips put me off. I’d never get any work done!

Because Ocrevus is so new they haven’t done a study comparing it to Lemtrada. But they have compared both drugs against Beta Interferon. That’s the new way of research comparisons. Both showed that they worked better than Beta Interferon.

Only time will tell if it works for me. Yes more MRIs to see if there’s any change.

If Ocrevus doesn’t work I lost my chips and have to take another gamble. But if it does, I am laughing all the way to the bank.

So I’m putting aside any doubts and putting my best vein forward.

My choice is to be massively optimistic; you’ve heard of the placebo effect right? I’m gonna hit this Muddy Sucker hard!

Here’s my advice:

• Whatever choice you make, it’s the right one for you.
• Take notes at the appointment.
• It’s scary being asked to make such a massive decision, so if you do feel afraid, that’s normal.
• Ask your MS team how much time you can have to make your decision.
• Ask when they expect to start, so that you can book it in and start clearing your diary for what is most important; treating your MS.

• MS Decisions aid - compare the different types of disease modifying drugs (DMDs) that are available to treat multiple sclerosis (MS).
• Guide to decision making
• Frequently asked questions - answers to some of most commonly asked questions about disease modifying drugs for multiple sclerosis.