Disease-Modifying Therapy: To Continue or Not to Continue Is the Question
Wow, I can see that look of, “Are you crazy?” And I agree with our younger generation asking this question, although, this is a valid consideration for us older folks. Disease-modifying therapy (DMTs) recommendations have changed over the years, as our medical and research industries learn more and more about MS.
Our MS world is so different than it was in 2009 when I was officially diagnosed. At least for me, there was a question of whether to start or not to start a DMT and which of the four or so would be the best. Today, the question is, which one of 13 should I take?
My treatment decision
I’ll share with you why I have decided to stop my DMT and the reasoning behind my decision. Hopefully, my approach behind my decision will help those who may be considering continuing or not. For those of you who are nearing that point, or age (yep, we all get there), I hope it will give you a bit to think about.
What does age have to do with taking DMTs?
For younger people diagnosed with MS, starting or staying on a DMT can be critical in slowing progression. Current DMTs reduce the damage to our myelin caused by inflammation.1-3
So, what does age have to do with it? My neurologist explained his opinion that, as we age our immune system begins to slow down. The thought behind discontinuing your DMT as you age is due to MS becoming more stable with less progression. With that said, it is different for all of us and you should continue to monitor your symptoms and MRIs to evaluate progression with your doctor.1-3
Should I stop my DMT?
Before I discontinued my DMT, there were several health considerations my neurologists and I reviewed and discussed in detail.
The most important was whether or not my MRIs found new lesions or progression over the last several years. If you have PPMS, like me, your decision may be more difficult since progression is consistent, and you’ll likely rely more on your lesion activity for understanding your progression.
My con considerations for stopping a DMT
My neurologist and I discussed that as we get older, along with the time we have utilized DMT, our compromised immune system can increase the risk of infections. Additionally, our DMTs have become more powerful and the potential interactions between medications become risker. Other risks I considered are the potential injection site infections and the possible chance, although low, of progressive multifocal leuko-encephalopathy.4
I find it helpful to discuss any health issues that I feel my DMT might be contributing to, with my neurologist.
My pro considerations for stopping a DMT
The pros of stopping a DMT are different for all of us. One of the drivers for me was the recent COVID-19 pandemic, and the possibility of decreasing my chance of getting seriously ill with a compromised immune system. Additionally, my lesions have been stable for years and my disease progression has been slow.
These are the main factors my neurologist and I took into consideration in making our decision. We plan to revisit our decision after my annual MRI and review my progression later this year.
Managing my MS without a DMT
There are several key lifestyle changes I have adopted to help manage my MS. I have shared some of my approach and lifestyle changes in my article, PPMS: Healthier Considerations to Live to the Fullest. I’ll share five key changes I made in helping to manage my MS. Please speak with your doctor before making any lifestyle changes.
Diet
First, I have limited processed foods, red meats, and sugars by eating a healthy Mediterranean diet that helps control inflammation. I eat whole grains, fresh vegetables, fruits, and fish - that are not only healthy but low in calories.
Exercise
Second, I exercise thirty minutes, five times a week. I know you're thinking, "walking is an issue, and now exercise?" Yes, I need to keep moving and there are several ways I do. My routine is weightlifting and riding a stationary bike. If this isn’t possible, you could consider yoga, stretching, swimming, or water aerobics.
Mental health
Third, I utilize a psychologist to review my life habits that are working and those that might not be working. A therapist can help look at sleeping patterns, appetite control, drinking, smoking, and more, and can offer changes to consider.
Mental stimulation
Fourth, I keep my brain active by reading, playing computer/table games, and creating task lists and tracking the completions. I particularly enjoy computer games and managing my finances and financial future using spreadsheets.
Energy management
Fifth, I conserve my energy through planning my day, resting when needed, utilizing walking devices, and generally not pushing myself to complete a task. I try to remember, there is always tomorrow.
Simple changes to my daily activities have helped with managing my MS and my safety. I’ll also review my list and make changes as needed as my symptoms progress or based on what I physically need that day.
What is your DMT experience?
Thanks again for taking time out of your busy schedules to read my articles. I look forward to hearing your thoughts on changing, staying on, or discontinuing DMTs. Your feedback is critical for our MS community to learn and discuss options. Be safe, spread kindness, and help others when you can.
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