Talk Openly to Your Doctor About Treatment
Hide Video Transcript
Video Transcript
MUSIC PLAYING:
There is no shame in telling your health care team that I'm tired of this medication. I always tell individuals I work with, if you gave me a 5-day Z-Pak, I'm probably going to be messing it up on day three. But we can't address the challenge that you have if we don't know about it. So if you're getting burned out on your medication, let your health care team know. There is probably something that's going to be a great fit for you.
I think the worst scenario that we see would be someone who stops their medication, or starts taking it inappropriately right after their appointment in the MS center, and we don't see them again for six months. And so here they are now, five or six months out with no treatment or incomplete treatment. So it is vitally important that people stay on their long-term treatment.
We do know that as people get older, there is the possibility that people can go off of treatment. The concept is called Immune Senescence, and it's the concept that our human immune system calms down as we age. So it's less likely for, say, a 65-year-old with an autoimmune condition to generate angry inflammation, than it would be for, say, a 25-year-old.
But there's a wide range of human experience within that Immune Senescence concept. We see individuals who are 70 whose immune systems still think they're 20, and so we have to look at it on a very individual basis. Unfortunately, we don't have a blood test as of yet that would let us know when we can safely stop an immune therapy in an individual with MS. I think we're getting closer to it, but for right now we encourage people to stay on their treatment for the long haul.
Again, our best treatment for MS is keeping it from giving you challenges. Every time a person with MS has a relapse, there's about a 30% chance that they keep a new permanent level of disability. We don't have the technology as of right now to reverse that disability. Again, we're getting closer, but for right now the best treatment for relapses and the potential for disability is to not let those relapses occur in the first place. So when we think about what we're trying to accomplish with any of these 20+ disease-modifying therapies, there's an acronym called NEDA. N, E, D, A. No Evidence of Disease Activity. NEDA means you're getting an A+ on your MS exam. It means you have no relapses, no new MRI lesions, and no progression of disability. That's the goal with treatment. With modern treatments, many people are achieving NEDA. They're getting an A+ on their MS exam.
If we go back and we think of pre-1993 when we had no FDA-approved treatments, the average person with MS has about 1.5 relapses, or attacks, per year. For every one of those attacks that we're aware of, that manifest with a clinical symptom, there can be 5 to 10 new lesions on MRI that are clinically silent. They're clinically silent right now, but they're not clinically silent in the long term. Every one of those new lesions that pops up is taking away something from your central nervous system.
And those silent lesions, year after year after year, that are accumulating in a person on no treatment, they take a toll. And so that's where we would see the 55-year-old individual who can no longer take a walk with his partner. Can't go out and participate in activities the way they used to, because the MS has picked away at the surface, under the surface, for so many years without treatment. So that's the rationale for keeping people on treatment, is to prevent relapses, new lesions on MRI, and ultimately disability in the future.
SPEAKER
We've come light years in treatment of multiple sclerosis. So when I finished neurology training in 1992, we had zero FDA-approved treatments for the long-term management of multiple sclerosis. We now have over 20 FDA-approved treatment options. There's no one treatment option that is right for every individual, so we have choices. We can talk about risks, and benefits, and lifestyle factors, and how the medication is administered, and find something that's right for almost every individual. There is no shame in telling your health care team that I'm tired of this medication. I always tell individuals I work with, if you gave me a 5-day Z-Pak, I'm probably going to be messing it up on day three. But we can't address the challenge that you have if we don't know about it. So if you're getting burned out on your medication, let your health care team know. There is probably something that's going to be a great fit for you.
I think the worst scenario that we see would be someone who stops their medication, or starts taking it inappropriately right after their appointment in the MS center, and we don't see them again for six months. And so here they are now, five or six months out with no treatment or incomplete treatment. So it is vitally important that people stay on their long-term treatment.
We do know that as people get older, there is the possibility that people can go off of treatment. The concept is called Immune Senescence, and it's the concept that our human immune system calms down as we age. So it's less likely for, say, a 65-year-old with an autoimmune condition to generate angry inflammation, than it would be for, say, a 25-year-old.
But there's a wide range of human experience within that Immune Senescence concept. We see individuals who are 70 whose immune systems still think they're 20, and so we have to look at it on a very individual basis. Unfortunately, we don't have a blood test as of yet that would let us know when we can safely stop an immune therapy in an individual with MS. I think we're getting closer to it, but for right now we encourage people to stay on their treatment for the long haul.
Again, our best treatment for MS is keeping it from giving you challenges. Every time a person with MS has a relapse, there's about a 30% chance that they keep a new permanent level of disability. We don't have the technology as of right now to reverse that disability. Again, we're getting closer, but for right now the best treatment for relapses and the potential for disability is to not let those relapses occur in the first place. So when we think about what we're trying to accomplish with any of these 20+ disease-modifying therapies, there's an acronym called NEDA. N, E, D, A. No Evidence of Disease Activity. NEDA means you're getting an A+ on your MS exam. It means you have no relapses, no new MRI lesions, and no progression of disability. That's the goal with treatment. With modern treatments, many people are achieving NEDA. They're getting an A+ on their MS exam.
If we go back and we think of pre-1993 when we had no FDA-approved treatments, the average person with MS has about 1.5 relapses, or attacks, per year. For every one of those attacks that we're aware of, that manifest with a clinical symptom, there can be 5 to 10 new lesions on MRI that are clinically silent. They're clinically silent right now, but they're not clinically silent in the long term. Every one of those new lesions that pops up is taking away something from your central nervous system.
And those silent lesions, year after year after year, that are accumulating in a person on no treatment, they take a toll. And so that's where we would see the 55-year-old individual who can no longer take a walk with his partner. Can't go out and participate in activities the way they used to, because the MS has picked away at the surface, under the surface, for so many years without treatment. So that's the rationale for keeping people on treatment, is to prevent relapses, new lesions on MRI, and ultimately disability in the future.
