With age comes wisdom, and if you’re lucky, it may also come with fewer multiple sclerosis (MS) relapses. If you’re an older person who’s gone years without an MS flare, it’s common to question whether you still need to be taking a disease-modifying therapy (DMT). This type of treatment aims to slow down the course of a disease instead of just addressing its symptoms.
Every individual with MS is different. The decision to stop a DMT can be complex, and it’s one you should make with your MS specialist. Here’s an overview of current guidelines, potential pros and cons, and factors to discuss with your doctor if you’re thinking of discontinuing your DMT for MS.
There’s a lack of consensus among MS clinicians about when it’s safe to discontinue DMTs.
Based on guidelines from the Consortium of Multiple Sclerosis Centers, individuals with relapsing MS and clinically isolated syndrome (CIS) who are older than 60 and have a prolonged inactive period of the disease, with no relapses and no evidence of new lesions on MRI, may consider discontinuing DMTs. CIS is the first episode of neurological symptoms that could be a sign of the beginning of the disease.
For people over age 60 with secondary progressive MS (SPMS), doctors could consider stopping a DMT if it’s not proven effective in slowing progression, if side effects from a DMT outweigh the benefits, or if there’s significant disability associated with advanced neurodegeneration (damage and loss of nerve cells in the brain or other parts of the nervous system).
Still, it’s a controversial topic, and the decision is highly individualized based on each person’s specific condition. Remember that for people with MS in general, discontinuing DMTs is associated with a higher relapse rate.
Research is underway to determine more details about who will benefit from remaining on treatment and who can safely stop.
Research has provided some important facts to keep in mind for older people considering whether it’s time to stop taking a DMT.
Potential reasons to consider stopping a DMT:
On the other hand, as you age, you lose your ability to recover from relapses. Researchers think that older people tend to have fewer MS relapses because the efficiency of the immune system declines over time. However, even one relapse at an older age is believed to significantly increase the risk for worsened disability and progressive disease. This is often called “relapse recovery,” and the ability to perform this well declines with age. From this perspective, it becomes even more important to lower the risk of relapses in older adults.
It’s important to work together with your neurologist to decide whether to stop taking a DMT. Because there are no firm rules about who should continue taking a DMT and who should stop, it’s largely up to people with MS and their doctors to determine what’s best.
Here are five factors you and your doctor might consider when deciding whether you should discontinue your DMT.
How old you are should play a role in your decision. Some research from the journal Multiple Sclerosis has found that people who are older when they stop their DMT might be less likely to have disease relapses or disease activity.
Your doctor might describe your MS as stable or inactive if you aren’t having MRI changes, relapses, or worsening disability. One study suggested that people older than 45 whose MS has been stable for four or more years before stopping DMTs might have a lower risk of disease relapse. If your MS has been stable for years, you might consider stopping your MS treatment.
People with secondary progressive MS (SPMS) might have better outcomes when stopping a DMT than people with relapsing-remitting MS (RRMS). A study in the International Journal of MS Care found that people aged 70 or older with stable secondary progressive MS (SPMS) for at least two years had an 88 percent chance of experiencing no disease recurrences in the next one to two years after discontinuing their DMT. The same study found people with RRMS had only a 41 percent chance of not having a disease recurrence. The type of MS you have can make a big difference in what might happen after stopping a DMT.
Many people with MS start with RRMS and later develop SPMS. As per recommendations from the American Academy of Neurology, for people with SPMS whose disease has been stable and who have not been able to walk for two or more years, the benefits of continuing a DMT may be limited. If the benefits are limited, they might not outweigh the risks, costs, and side effects anymore, and you might consider stopping a DMT.
Medication side effects can range from mild to miserable. A study from the journal Multiple Sclerosis and Related Disorders cited that 33 percent of people who decided to stop their DMT did so because of medication side effects. If you’re experiencing bothersome side effects from your DMT, or you are worried about harmful interactions between the different medications you take, you and your doctor will need to carefully weigh the risks and benefits of continuing the DMT. Your doctor might recommend you try another DMT, take a drug holiday, or stop completely.
If you’re considering stopping your DMT, ask your neurologist about your disease activity. Review past MRI results. Talk about your symptoms, your Expanded Disability Status Scale (EDSS) score, and medication side effects. After considering these factors, you and your doctor might decide together to stop your DMT. If your doctor doesn’t think it’s the right time to stop, make a follow-up plan. Ask what signs you should look for in the future that might mean it’s time to stop your DMT. No matter what, the final decision is yours.
If you and your neurologist decide it’s time to stop your DMT, it’s important to continue getting regular follow-ups and MRIs to make sure your MS remains inactive.
If you decide to stop taking a DMT for MS, it doesn’t have to be a permanent decision. If you stop the medication and start experiencing more disease activity or relapses, you can take the medication again or explore other treatment options. Your MS specialist is a valuable source of information and support. They can assess your situation, evaluate how well the previous medication worked for you, and help you find the best treatment plan for your needs. Talking regularly with your MS specialist is vital to make sure any changes in your treatment plan are personalized to you and help manage your MS effectively.
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