Were you diagnosed with multiple sclerosis and then handed a binder of medications with a lot of promises, but also a lot of side effects? Which MS medication should YOU take?
Somehow – with no medical background or understanding of pharmaceutical drugs – you’re supposed to decide.
It’s like when you’re handed a menu in a restaurant and the server comes by to take your order.
But instead of choosing the meal that you’re most in the mood for at the moment, you’re deciding which medication you’ll be taking for the rest of your life to manage MS.
Why is this decision left up to you?
Just as there’s no one test to definitively diagnose multiple sclerosis, there’s no one plan to treat it either.
Frustrating I know.
Because everyone has such a unique experience with MS, each person needs a unique plan to manage it.
This can be both empowering and confusing.
So, let’s talk about it.
This is not a medical conversation – I am NOT a doctor so I’m not qualified to speak to specific medications or give you medical advice.
We’re simply having an honest conversation about how to handle this common, but very overwhelming situation many of us find ourselves in. It’s about supporting you in having the most productive and collaborative conversations with your doctor so you can come to a decision – one that you can feel confident about.
Understanding Multiple Sclerosis
Multiple Sclerosis is complicated… and it’s personal.
No two people have identical symptoms or progression rates.
While there may be general guidance on how to manage MS, each person has to figure out their own unique path.
Which again, on the surface can be empowering… but deep down it’s confusing… and overwhelming.
So naturally you start looking at your options.
Front and center is your doctor.
They’re recommending medication… immediately.
They’re emphasizing the urgency with phrases like “or else.”
They have years of training and clinical experience, so they know what they’re talking about.
But then, you stumble upon these people online talking about how they’re managing MS with diet and lifestyle, and you’re wondering if it’s legit.
The Whole Story
Are they telling the whole story?
Is it really all diet and lifestyle for them or are they taking medication when the camera goes off?
Are they struggling too?
And even if they are really managing it with just diet and lifestyle, how can they be so confident that it won’t come back to bite them in the future?
They don’t know how this disease will progress in their future.
Maybe it’s great for the moment, but they’ll regret their decision later.
And should social media really influence a major medical decision for you?
So then you start to lean back towards your doctor’s advice.
It’s backed by science, research and there’s reassurance that comes with that.
But what about the side effects??
They’re so hard to get past.
Some are worse than MS itself, how does that work?
Here you stand – clock ticking – pressure mounting and decision looming.
Which is the right one for you… the one that will give you the best chance to keep this disease stable and the one that you won’t regret?
Again, I cannot give you medical advice, only your doctor can do that.
It is important that you keep the conversation open with your doctor.
However, I want to invite you to take a breath and take a moment to ask yourself a few questions.
Questions to Discuss with Your Doctor
Step back from the pressure and the overwhelm for just a moment.
It’s easy to allow our emotions to get the best of us in times like this.
So, what if you took a step back to do a little evaluation…
What is the current status of your disease progression?
Understanding the current status of your disease progression is essential.
It’s not just about what symptoms you’re experiencing, but how aggressive they are, the frequency of relapses, and any changes in MRIs.
This gives you a snapshot of how active your MS is at the moment.
While some people may have progression that is very slow or almost non-existent, others might experience rapidly progressing forms.
Your approach to treatment can change based on this.
Is it significantly impacting your daily life?
This question delves deep into your quality of life. Even if the disease is progressing slowly, it might be causing debilitating fatigue, cognitive issues, or mobility problems. Think about the tasks or activities you once enjoyed or found easy, which have now become difficult or impossible due to your symptoms. A treatment’s main goal is to enhance your quality of life; understanding these impacts helps prioritize what is vital for you.
How quickly does it seem to be progressing?
An aggressive progression might call for more immediate and possibly aggressive intervention. Remember, it’s not only about the physical progression but the cognitive and emotional changes you might be facing. Are you finding that symptoms are popping up more frequently than before, or are the gaps between relapses shortening? Knowing the pace of your disease’s progression can determine how urgent your treatment plan should be.
Are there immediate and significant risks to one decision or another?
All choices come with risks. If you choose a particular medication, are there potential side effects that could be detrimental to your health? On the flip side, if you opt for a diet and lifestyle route, is there a chance that the disease could progress further in the absence of medication? Consider also the risks associated with inaction. Not making a decision is a decision. And in my personal opinion, it’s not a good one.
If you want to explore diet, are you willing to fully commit to it – no cheat days?
Diet and lifestyle changes require a significant commitment. This isn’t about occasional healthy choices, but a consistent shift in how you approach your daily life. Some dietary approaches suggest that even a single cheat day could offset the benefits. Will you be getting all the essential nutrients your body needs? Are you willing to forego some of your favorite foods? A half-hearted attempt might not only be ineffective but could also be discouraging if you don’t see results.
Taking the time to consider these questions and discussing them with your doctor can provide clarity. Remember, the journey with MS is personal, and what works for one person might not work for another. The goal is to make informed choices that align with your unique circumstances and values.
Reflecting on MS Medications
Take a minute to reflect on these questions at first by yourself.
Then discuss them with your doctor.
We know that MS is so unique to each person, so the greatest value your doctor can give you is a perspective on your personal status with MS.
If you’re currently experiencing a lot of disease activity and significant symptoms, or you simply want to throw everything you have at this disease, talk with your doctor about finding the medication that best matches your current activity or progress of MS.
How long has this medication been on the market?
The length of time a medication has been available can give you a sense of long-term effects and safety. Older medications have a longer track record, and more data is available about how effective they are and any potential long term side effects.
Newer medications have the appeal of advancements over the older drugs, but we have less long-term data available. Asking this question can help determine your comfort level with the knowns and unknowns of a specific drug.
What are the known side effects?
Every medication has potential side effects. Understanding them not only prepares you for what to expect but can also impact your decision based on how those side effects might interact with your current symptoms or lifestyle. Some side effects might be minor and manageable, while others might be more severe or even outweigh the benefits of the medication.
What benefits can you expect?
This question addresses the core purpose of taking the medication. What improvements or changes can you anticipate in your symptoms, disease progression, or overall health? Are these benefits supported by research studies? Knowing the potential positive outcomes will help weigh them against the possible risks or side effects.
When will you likely experience benefits?
The timeline to see improvements or changes is crucial. Some medications might offer immediate relief or benefits, while others may take weeks, months, or even longer to show noticeable results. Knowing this can help set realistic expectations and patience levels, ensuring you give the treatment an adequate chance to work.
If you’re pregnant or planning to become pregnant, is it safe during pregnancy and breastfeeding?
Medications can have varying effects on pregnancies and can transfer to babies during breastfeeding. It’s crucial to understand any potential risks or complications for both the mother and the baby. This question is especially vital for those in their childbearing years or considering starting a family soon.
When Can Your Re-evaluate Your MS Medications?
Would there ever be a time, you could re-evaluate your progress and safely transition off it?
The idea here is understanding the commitment level of the medication. Some drugs require a long-term or even lifelong commitment, while others might be used temporarily or in cycles. There’s also the question of what the process looks like if you decide the medication isn’t right for you: Can you simply stop taking it, or is there a weaning process? Knowing this gives you a sense of flexibility and adaptability in your treatment plan.
Each of these questions delves into the specifics of a treatment option, ensuring you’re not only making an informed decision but also one that aligns with your comfort levels, lifestyle, and future plans.
These questions can help you collaborate with your doctor on the best medication option for you.
But I hear many of you saying, what if my doctor doesn’t have the time to answer my questions or explain all of this to me?
Don’t worry, you have other options too.
There are other medically trained professionals that can be a great resource for you.
Professionals to Help You Decide on MS Medications
Some of my favorite people to talk to about questions on medication are…
These are the medication experts. They are trained extensively on how drugs work, their interactions, side effects, and how they act in the body. If you have questions about how a medication works, potential interactions with other medications you’re taking, or even just practical questions about how and when to take it, your pharmacist is an excellent resource.
Nurse Practitioners (NPs) in the Office
NPs are often more accessible than the doctor and can provide a wealth of knowledge. They work closely with patients, monitoring their reactions to medications and answering questions about them. They are trained to provide both medical care and education, so they can be a great resource for understanding your medication, its side effects, and what to expect while taking it.
MS Nurse Specialists
Some medical practices or MS centers have nurses who specialize in MS care. These professionals are well-versed in the specifics of MS treatments and can provide insights tailored to the unique needs of MS patients.
What About Diet?
Now let’s talk about diet.
What if you want to explore diet?
Again, this is not medical advice, this is simply helping to prepare you for a productive conversation with your doctor.
If you find that you’re stable and have been for a couple years, and you’re really curious about what diet and lifestyle can do for you, maybe you talk to your doctor about the opportunity to explore this option.
Do they feel you would be at significant risk if you went all in on diet and lifestyle for the next couple months and then you re-evaluated to determine a more long term plan?
Your doctor may or may not be onboard with this, but listen to their response. Try not to get caught up in proving or disproving one theory over another – what are the facts that are being shared with you?
And remember choosing the best of both worlds – conventional medicine and diet – is an option too. It doesn’t have to be an either or.
Again, this is not medical advice, my intention is to help you have the most productive and collaborative conversations with your doctor so you can come to a decision that you can feel confident about.
And that brings me to my final point here.
Commit to Your MS Medication Plan
Whatever decision you make – once you’ve made it, try to stick with it and shut down any doubt that tries to make you second guess yourself. That’s not helpful. Make a decision, follow through with the plan and stay connected with your doctor to track your progress.