Disease Modifying Therapies (DMTs) for MS
Here’s the deal - this article has A LOT of info about Disease Modifying Therapies (DMTs) for MS like what they are, what they do and possible treatment approaches. But, to be clear, I am NOT here to tell you what medicine to take, and frankly unless the person is a healthcare provider (Dr, PA, Pharmacist), you should not take specific guidance from them. My job is to provide you with the information, present options and share pros and cons to help guide you to making a decision that works for you (with your doctor’s help).
OPTIONS GALORE
Who doesn’t love choices, right? Whether it is what to eat, what to do (or not do), how to respond to a situation or what medicine to take (or not take), you have choices. Even though it may feel like chronic illness steals your choices away, it does not. It changes the choices you have, but you do still have a choice.*
*Now, recognizing and accepting that you still have a choice is a whole different story (and if you want insight on acceptance go here or awareness go here).
In healthcare specifically, our options have greatly increased due to advancements in research and technology. This is true for many chronic illnesses, but especially for MS.
Disease Modifying Therapies (DMTs) to treat MS first hit the market in 1993. In the 30 years since then, over 24 DMTs have been introduced to manage MS. If you know anything about the slow and expensive drug development process, this progress is truly astounding.
DMTs have been shown to:
Reduce the amount of lesions and relapses and minimize the amount of disability acquired over the course of someone’s life
Improve prognosis and quality of life for people with MS (in general)
For the record, there is still progress that needs to be made, specifically for those like myself with SPMS and those with PPMS and we can still celebrate the progress that has been made thus far.
Don’t take my word for it, look at this long ass chart with all the approved MS DMTs below.
Note: The chart below indicates the high-efficacy DMTs for MS (based on trial data, see chart for more info). Everyone’s MS is different and not everyone needs a high efficacy DMT. So please don’t think if you are on a moderate therapy that you are on some sub par med, or if you are on a high efficacy med your MS is really bad and you are destined for a terrible future. That is not how it works. :)
Anyway, with options abound, it is hard to know what is the right fit. Add on the fact that every person’s MS is different PLUS the possibility of side effects, accessibility, cost, logistics and personal preferences and it may start feeling like the room is caving in. If that happens, I get it and I’ve been there - take a few breaths and remember you always have a choice.
Goals of DMTs
First, let’s chat about DMTs for MS in general. These meds are different than what one may initially think of when they think of medicine. For example, if you have a headache, you take Advil. In an ideal world it goes away and you go on about your day. MS DMTs are not like Advil. They minimize damage and disability over years, not improve current damage or disability within a few hours or days. While your body does have the ability to heal damage (to a degree) with time, it’s not like you experience symptoms from MS and then you take a DMT and all of a sudden those symptoms improve or disappear quickly aka it’s not like ‘oh my leg is numb, let me take my DMT’ and then a few hours later your leg feels back to normal.
There are some DMTs where you feel better day to day, but that’s not their goal. The goal of a DMT is to minimize the big, acute, disabling events like relapses over the course of years. Therefore reducing the amount of disability and damage you accumulate over the course of your life - in short, DMTs are more of a long term benefit.
You may experience an ebb and flow of symptoms day to day even when you are on a DMT. And if you do, that does not necessarily mean it’s not working (obviously if you have concerns check with your doctor). Often, after being on it for a certain number of months, you will have an MRI to see if any new lesions have formed in order to evaluate if the medicine is working. If there are not any new or enhancing lesions, and you haven’t experienced any relapses, then your DMT is working! YAY!
While it may be frustrating that DMTs may not help how you are feeling day to day, all hope is not lost. There are things that can help how you feel. That is where lifestyle modification comes into play. Things like minimizing stress, staying hydrated, eating nutrient rich foods, getting high quality sleep and incorporating movement into your day can all help. I know you may be thinking, ‘how much can it reallllllly help?’. My answer to you as someone who has been on both ends of the spectrum, is A LOT. On top of that, physical and/or occupational therapy and other medicines for the specific symptom you’re experiencing can also be beneficial in managing symptoms.
A WORD ON SIDE EFFECTS
To touch base on side effects from DMTs, they vary depending on the medicine and how it acts on your immune system. While no one wants to experience side effects, anything you put in your body can cause a side effect.
Drink coffee in the AM? A side effect of that caffeine is the jitters you can get with it. Take advil on an empty stomach and it makes you nauseous? That’s a side effect.
Some side effects are manageable, others are less so. Any side effect list can be fear provoking, not just those with MS DMTs. Tylenol and other over the counter meds are no different. At least they state the possible side effects, while supplements, vitamins and the like are not required to. If they were, you may be surprised at the lists on those too!
Believe me, I know the lists of side effects can be overwhelming, but please please please remember that just because a side effect is listed, does not mean it WILL happen to you.
It’s important to understand possible side effects, how often they occur and what they are. Then decide what you can and can’t handle. Since we all have different values and perspectives, one person may not feel comfortable with a side effect that another person feels completely fine managing. It is up to you to find a balance that works for you.
If you aren’t sure if a side effect is negatively affecting your life or not, track how often it happens and the impact it has on your life. Then, assess your data. You can even share it with your doctor and talk it through.
DMT EXPECTATIONS + NOTE on PERFECTION
In terms of expectations - no medicine (or anything else for that matter) is perfect. Often medicine for chronic illnesses help in management but do not CURE it and in some cases it may not COMPLETELY manage it to the point where you never have a relapse or problem again, so keep that in mind.
I know, I know, it sucks. Anddd its also reality - meds may not stop EVERY relapse or new lesion and they may cause side effects. But you won’t know how a particular DMT works for you specifically until you try.
Since you may experience side effects of the medication and the medicine may not stop all lesions and/or relapses, it is up to you and your doctor to find a balance that works for you. Ideally, you are looking for something that minimizes disease activity as much as possible and has as little side effects and impact on your quality of life as possible. Sometimes that means you may have to live with side effects b/c an effective medicine that minimizes disability, relapses and new lesions may be a worth the headache (literally). But again, it is UP TO YOU to decide.
Treatment for MS is not black and white, it is very, very gray. The good news is that there are so many more options for DMTs, it is easier to find one that works for you and that you can incorporate into your life. If one is ineffective or causes undesirable side effects, there are other options. There is no shame in needing to switch medicines to find a better fit for you and your wellbeing so take your time in finding one that works for you.
TWO APPROACHES FOR TREATING MS
Please keep in mind that this is all general information. Talk to your doctor regarding any questions you have. Below you will find the two approaches and a cute little flow chart showing possible treatment paths.
#1 INDUCTION APPROACH
This is the ‘wham bam thank ya ma’am’ type of approach. The Induction Approach starts strong immunosuppressive medicines to address the inflammatory activity early. These DMTs are often labeled as ‘high efficacy’ and include Tysabri and the B-cell depleting therapies like Ocrevus or Kesimpta (this list varies, these are the ones most commonly listed).
Reward
The idea with this approach is to use a stronger medicine to slow damage in the early stages after diagnosis. Less damage now means less neurodegeneration later. Limiting inflammatory activity early sounds promising, and of course like anything there is a trade off….
Risk
Anything that is higher efficacy will carry a higher risk in terms of short or long term side effects and other ways. This is true for many meds, not just MS ones. The trade off is especially important to be aware of since medicines for MS are something you’re on for a long time.
One other potential downside is there aren’t guidelines to say how long one should be stable on high efficacy meds before de-escalating therapy. And in some cases, de-escalation can be associated with increased MS symptoms or MS rebound.
When could this be a good fit?
If you have highly active MS, highly value efficacy, and/or are risk tolerant (like you can accept the possibility of more frequent infections and/or the risk of other side effects) this may be a good option for you.
#2 ESCALATION APPROACH
The other option is to take a less hit it hard and fast approach, and go with an intermediate efficacy med, and then go from there aka the Escalation Approach. Basically not everyone needs to be on a high efficacy med to stop lesions or relapses.
With this route, you would start on a intermediate/moderate efficacy DMT and have very careful and adequate follow up to detect disease activity breakthrough as quickly as possible. IF there is breakthrough activity you and your doctor will decide to try another moderate efficacy med with a different mechanism of action (works differently in body so it may be successful) OR go to a high efficacy med at that point.
Reward
The benefit of course is that if the intermediate efficacy DMT is effective for you, you are not more or less over medicating yourself by taking higher efficacy and higher risk meds.
Risk
While the intermediate efficacy meds may have less risk side effect wise (in general) there is the risk that you may experience disease activity or have a relapse. And of course, you don’t know what physical or mental symptoms the relapse could cause so that is your trade off with that route.
When could this be a good fit?
If you value a cautious approach in terms of side effects and risk, this may be the route to go.
ESCALATION VS INDUCTION THERAPY
How are you supposed to which way to go?
Look at the info below - first is a summary of what the research to date (Feb 2024) shows. Second, there is a flow chart with possible treatment paths. Third, is a note on factors that can influence what medicine to choose and a final word on making a decision on a DMT. If you have more questions or need more clarity, speak to your doctor.
Research shows…
No published trials comparing the escalation approach vs the induction approach head to head exist currently. There is research to show that the induction approach may result in better outcomes with MS however those results are mixed and have limitations. Right now, it is not clear if the benefit is seen only in patients with an aggressive MS onset or in all patients regardless of onset. Therefore, more research is needed. So, for now, the decision of induction vs escalation therapy is up to your doctor and you to make collaboratively.
In good news, there are two studies currently in progress - TREAT MS and DELIVER MS. Their projected end dates are November 2026, so stay tuned!
Flow chart with different treatment strategies
If you are a visual person, the chart below shows a variety of different treatment paths. Obviously, not every possible outcome is listed, so don’t come for me if the path you have chosen to take is not below. :)
Adapted from: https://practicalneurology.com/articles/2022-feb/treating-early-relapsing-multiple-sclerosis-induction-escalation-approaches
FACTORS THAT INFLUENCE DECISION MAKING
You may notice in the above chart the *asterisk is showing factors that may affect which DMT you choose. I have an article that goes into more detail about this and outlines my personal DMT journey (up until Jan 2023) - you can find it here.
THE FINAL ANSWER
Deciding on a medicine for MS is a big decision and one you need to feel confident about. So please, if your doctor says something that you don’t understand or don’t agree with, get curious, be respectful and ask questions.
For example, if they say you should do a high efficacy therapy, ask why they believe that and what factors led them to that decision. Or, if they are concerned about you staying on a medicine because of side effects or for another reason (like staying on Tysabri if you are JCV+), ask how many people choose to stay on despite side effects or being JCV+, or how long could you stay on the medicine considering the side effect (or JCV+ level). Or, ask what the likelihood of a negative outcome is or anything else you are concerned about.
It’s not illegal to ask questions to better understand a doctor’s reasoning or recommendations and in fact it is a great way to be involved in your care and advocate for yourself. One disclaimer tho, while it is not illegal, bring your highest priority questions to your doctor. Often doctors are pulled in five million different directions, have large patient case loads and must do a lot of other tasks that patients aren’t always aware of. As much as we would love to be able to grill a doctor for an hour about meds, it isn’t always feasible for them - they have bosses too and may be stuck in the middle and doing the best they can. I’m NOT saying this is okay, I am just saying this is how the system is set up. So, make a list of questions in order of priority and ask as much as you can within the time you have.
Lastly, please know that whatever medicine you pick does not have to be the one you stay on forever and ever. It may take a few tries to find one that works for you, and that is okay! The most important thing is that there are lots of options in the MS world and even more advancements to come. So try things out and always maintain some hope. :)
