Last updated: February 2023
We don't always need to be afraid of change. Change is what happens when we are made different, and one thing living with MS has taught me is that change never stops. Then there is change where we substitute one thing for another in the hope of making an improvement. It is this second type of change that I embrace. We can’t be so committed to the way we are treating our multiple sclerosis that we are hesitant and fearful of making a change in our disease-modifying treatment (DMT) plan when our situation changes.
Long before I was diagnosed with MS, there were no DMTs, until the introduction of Betaseron in 1993. The drug was in such demand there was a lottery held to see who the lucky people with MS might be that got to try this wonder interferon drug.
My MS DMT experiences
When I was diagnosed over a decade ago (2008 to be more precise) and 15 years after the approval of Betaseron, there were four drugs approved for use in treating MS. We often referred to them as the CRABs, which stood for Copaxone, Rebif, Avonex, and Betaseron. Three of these were interferons and the fourth, Copaxone, was a glatiramer acetate. My first DMT was one of the CRABs - I chose to take the one that involved daily injections and skipped the interferons.
Switching from injections to infusions
A few years into the daily injections of Copaxone, I found myself fatigued from the needles and began skipping doses. My neurologist suggested I try the newly approved infusion, nataluzimab (aka Tysabri), because it showed great efficacy in delaying progression. I was favorably impressed that an infusion once every 28 days or so could replace the daily injections, and I agreed it was the right DMT for me.
Dealing with side effects
Another few years passed and my infusions went without a problem but a known possible rare side effect of Tysabri is the risk of progressive multifocal leukoencephalopathy, commonly referred to as PML. PML can be a fatal brain infection, and the risk level is monitored through regular blood tests.1 My blood tests showed a significant change and my risk level was increased.
Taking a chance on a new drug
It was about this time that a new drug with a different mechanism of action in treating MS was approved. Ocreluzimab, marketed as Ocrevus, is an anti-CD-20 drug that depletes B cells.2 The studies on this new drug had especially impressive results and my neurologist and I decided this was a good choice for me. A bonus for me was the drug was given every six months, a convenience that easily beat daily injections or monthly infusions.
COVID-19's impact on my treatment decision
I was doing well on Ocrevus when I hit an unexpected obstacle. It seems our body relies on B cells to produce an antibody response from vaccines. Despite having had a severe case of COVID-19, two vaccinations, and one vaccine booster, I have developed no antibodies to protect me against future cases of this novel coronavirus. The choice I faced was the risk of getting COVID again, or stopping this anti-CD20 drug and allowing my body to reconstitute B cells.
My most recent DMT decision
My neurologist is of the thinking that not treating my MS is not an option, and it was recommended I consider the ‘new’ DMT, cladribine, brand name Mavenclad. Or, I could go back to my original drug, Copaxone. After some time and consideration, I opted to do Mavenclad, which is an oral DMT with an initial dose of five days, followed a month later by another five days. Then I will wait a year and do this dosing again and be finished with treating my MS with a DMT.
Or, at least that is the plan. When I first began taking a DMT for my MS, the plan was I expected to be on it for life. But as we all know, our circumstances can change and new drug opportunities present themselves. Making these decisions was always in consultation with my neurologist and not without serious consideration of the risks and benefits. But so far, these changes have given me nothing to be afraid of.
Wishing you well,
Do you ever have moments where you question your self worth because of your MS?