Mastering a Relapse (2) - The Risk Vs Reward Crossroad

It is not the decisions we make but what we make of these decisions once we have made them that makes all the difference in our lives - Madeline Claire Weiss

Every day we make dozens of decisions based on risk and reward. How many exactly? The answer is staggering - around 35,000 conscious decisions a day. That’s 2,000 an hour! Which makes me wonder how much effort we’re actually putting into making the RIGHT decisions each time.

Like choosing to eat that piece of cake even though you know you’ll have to pay for it later or choosing to cross a busy road with cars coming rather than waiting for the light. Small decisions, big impacts. It’s only when we’re forced to make big decisions with big impacts that we take the time to do a little research, weigh up the options and take a calculated gamble.

Risk Taker or Risk Adverse?

What about if you could choose to have a drug injected into your arm that either cures you or kills you? Would you take the risk and gamble your life on it? How would you decide? This is a decision I recently had to make (but more on this later…)

Personally, I’m a habitual risk taker and my motto is, with big risks come big rewards, as long as you’re prepared to deal with the consequences and have weighed up the options (see the Risk vs Reward Matrix below for more info on this). After all, how can you ever explore the potential of a situation if you’re not prepared to push yourself outside your comfort zone. And yes, that attitude has almost gotten me killed me a few times, but it has also bought me 12 years of quality life free from MS and its associated disabilities. 

Having An Ace Up Your Sleeve

Recently, I flew back from Toronto, Canada to a small town in remote Queensland, Australia to be with my partner. It was certainly a big risk on my part, given my MS had returned and the healthcare system where I was going was limited to say the least (check out my video blogs HERE). But I didn’t do it blindly, I did have an ace up my sleeve (hint - you should always have an ace up your sleeve!). I knew there was a highly regarded neurologist based in Townsville (3 hrs drive away) who was an MS expert. Only problem being, I had no referral and no idea if or when I could get in to see him.

Turns out the answer to that question was two weeks! Yes, remarkably, two weeks after I landed in Airlie Beach, in the heart of the beautiful Whitsundays Islands (on Queensland’s Great Barrier Reef), I found myself in the office of Dr. Mike Boggild, one of the top neurologists in Townsville and the author of several research papers on multiple sclerosis.

My Knight in Shining Armour - Dr Mike Boggild

My Drug of Choice?

I walked in pretty much set on Lemtrada (alemtuzumab) as the answer to my problem, a drug I knew all too well. I chose it as a treatment plan for myself  9 years ago. At the time it was one of the most effective drug options available for MS, and as far as I knew there still wasn’t anything else more effective, except maybe stem cell therapy programs which are exceedingly expensive and very hard to get into.

But I also knew Lemtrada had some (potentially) terrible side effects. How did I know this? Because they all happened to me! I developed Hashimoto’s disease (which destroyed my thyroid gland) and ITP, a blood disorder that nearly killed me and left me bruised and bleeding from my gums and nose (read more about my journey on my website). Not to mention the coma I slipped into and barely came out of.

The New MS Treatment Landscape

However, Dr. Boggild explained that the MS treatment landscape had expanded over the past decade, and he stated there were a number of new drugs available with apparently fewer side effects. These included:-

Kesimpta (ofatumumad) - a monoclonal antibody that dampens down the immune response but requires injections every month

Ocrevus (ocrelizumab) – also a mono-clonal antibody that requires two infusions per year but is not as effective as Kesimpta

Tysabri (natalizumab) – an immunosuppressant with fantastic efficacy that dampens down your immune system but leaves you at greater risk of serious infection.

The question was, did they have better efficacy than Lemtrada? And the answer, surprisingly, was no (except for maybe Tysabri – but that came with its own side effects and a massive commitment – monthly injections for life).

I also asked him about using a combination of clemastine (an old antihistamine medication) and metformin (an old Type-2 diabetes medication) to repair the damage to the myelin around my nerves. I’d heard the combo could actually reverse some (if not all) of the disability and symptoms brought on by MS. Dr Boggild stated it was currently still in trial (see HERE for more info) and the jury was still out as to whether it was safe and effective in humans long term. 

The same held true for a new drug being trialled by Dr. Steve Petratos from the Alfred Hospital in Melbourne (ie it was in Phase II clinical trials and was not quite ready for a national roll out). It also promised to be a miracle drug (ie. not just slow down the progression of MS but halt it entirely - check out more info about this HERE)

For the record, Dr Boggild recommended Kesimpta but I was circling back to Lemtrada, a “one and done” option that better suited my international retreat and author lifestyle: three days of infusions with no further commitment (other than a few years of follow up blood tests) that could grant me years of remission without medication.

Big risk, big reward. What would you do?

According to the psychologists, the best way to consistently make “effective decisions” is to balance your “reptilian brain”, which governs instinctive thinking, with your “rational brain”, which is responsible for strategic thinking. Gut instinct vs logic and experience.

The problem is, we are all inherently biased in our outlook. Depending on our character, upbringing and life events, some of us are risk adverse and some of us are overconfident in taking on risks. The trick is not to make snap decisions when you’re in the middle of a crisis or during high risk/high reward situations. Instead, have strategies in place for when this does happen. This might be as simple as setting your emotions aside for a minute and thinking about the problem from a different, more detached perspective.

Now obviously, a major health decision is highly personal BUT here’s my thoughts on this, for what they’re worth. Once you make a decision, you commit to it fully. Live in faith and acceptance, not fear. Going down the path of “what ifs” is a waste of time. Learn to embrace uncertainty, because every outcome—good or bad—is the result of taking a certain amount of risk in order to gain rewards. Life isn’t about guarantees; it’s about making bold choices and accepting the journey, wherever it may lead.

And although every action carries its own karma, we can, to an extent, control outcomes by tackling big problems holistically. In my case, not just relying on a drug but changing my diet, my outlook, my exercise routine and my environment to give my body all the tools it needs to reign in my overactive immune system.

In the case of Lemtrada, I still look back on my choice as the right one at the time despite the side effects because it gave me over a decade free of MS attacks. Will I make the same decision again? The honest answer is, I’m not sure, I’m still weighing up the risks and rewards. Stay tuned for my decision in my next blog….