As more high-efficacy disease-modifying therapies (DMTs) are being made available, people with multiple sclerosis have to decide how much risk they’re willing to accept in exchange for the treatment’s potential benefits. It’s a tough decision, not made any easier if a patient’s neurologist is unwilling to accept much risk.
According to researchers at the University Medical Center Hamburg-Eppendorf in Germany, when it comes to one highly effective DMT, patients are willing to accept more risk than thier neurologists.
The DMT is Tysabri (natalizumab). One of its risks is progressive multifocal leukoencephalopathy (PML), a rare and potentially fatal brain disease. In the study, 69 patients treated with Tysabri and 66 neurologists were told to read a three-page leaflet about the association between Tysabri and PML. After reading it, they were asked whether they thought the Tysabri treatment should continue. Unsurprisingly to me, significantly more patients were willing to accept the risk than the were the neurologists. Forty-nine percent of the doctors reported that if told that Tysabri’s PML risk was two people in 10,000 or lower, they would stop treatment. But only 17 percent of the patients would.
The researchers believe that one reason the patients’ risk acceptance was higher was that their perception of the harm MS could potentially cause them over the years was significantly greater than their doctors’. Interestingly, the report notes that both patients and doctors had higher-than-warranted expectations of Tysabri’s positive affects.
My Tysabri experiece
Tysabri was good to me. I was treated with it for about seven years, and it seemed to be more effective than my first DMT, Avonex (interferon beta-1a). I don’t remember any adverse side effects, and its monthly infusion schedule fit my lifestyle. However, when I was using Avonex, I quickly developed needle fatigue from the weekly injections.
Was I concerned about the possibility of PML? Sure. Fortunately, though, I was on the same page as my neurologist concerning benefits versus risks. She told me that I would be carefully monitored for PML. That meant blood tests and a brain MRI every six months. She assured me that if those tests spotted early signs of PML I would have the Tysabri flushed from my system and would be moved to another DMT.
My neuro also told me that PML becomes more of a risk after two years of Tysabri treatments. So, at around that time that she cut back my infusions from monthly to every eight weeks. Increasing the time between infusions to as much as 8 1/2 weeks is not believed to diminish the efficacy of Tysabri, but it does reduce the PML risk.
After seven years on Tysabri, however, my blood tests showed that my titer score was rising to a concerning level. The titer score measures the level of the John Cunningham (JC) virus in the blood. The higher the titer level, the greater the risk that a dormant JC virus will reactivate and trigger a PML infection. It was at that point that I was taken off Tysabri and switched to Aubagio (teriflunomide).
A risk decision needs collaboration
I hope that this post will help you and your neurologist avoid a knee-jerk reaction when deciding how to treat your MS, whether that treatment is with Tysabri or another DMT. The decision should be a collaboration and both doctor and patient should have a good understanding of the risks and benefits of the treatments they are considering. Unfortunately, in my experience, that’s not always the case for either.
(A version of this post first appeared as my column on www.multiplesclerosisnewstoday.com).
(Featured image by Arek Socha from Pixabay
