After 20 years on MS medication, should I continue or stop?

Here is My Question:
I have been on Betaferon/ Avonex/ Plegridy for more than 20 years. Does one know whether this medication could still have an effect after this long time? Doctors do not agree about it. I am obviously in the Secondary Progressive stage, and still get the side effects. Shall I stop? Thank you,

Answer:
Whether or not one should eventually stop a disease modifying therapy (DMT) at some point in their journey with Multiple Sclerosis (MS) is a complex and, at times, emotional decision. Often people face this decision after placing their hopes on DMTs  for well over a decade.  There is some data to help with these decisions and several larger studies underway to provide even better data. Here is what the data suggests so far:

1. People  over the age of 55 (some say 60) with secondary progressive MS (SPMS) on DMTs but no relapses or MRI activity for over 2 years may consider discontinuing DMTs, even if they have experienced continued progression 
2. One retrospective observational study of people over the age of 60 with any type of MS who were on DMTs for more than 2 years reported no increase in relapses or progression after stopping DMTs
3. One retrospective, matched case control study from a single center in Boston (CLIMB study cohort) suggested that there was no increase in relapses, progression or MRI activity in people with stable MS over age 45 who stop DMTs compared to a paired group of  patients who continued their DMTs
4. A large observation study of people with MS (MSbase cohort) over the age of 18 with no relapses for more than 5 years at the time of treatment discontinuation  showed no increased risk of relapses overall in those who stayed on DMTs compared to those who stopped DMTs after more than 3 years of follow-up. There was a higher rate of disease progression in those who stopped DMTs, which requires further controlled studies to understand better; For instance, did those patients who progressed after stopping DMTs do so because they or their doctors already knew they were progressing at the time they stopped their DMT (i.e. this was the reason they stopped) or did they progress because they were no longer taking a DMT. It should be noted that the average age of this cohort of patients was 45, and few MS specialists recommend stopping DMTs under the age of 45, which was half of their cohort.

To summarize:

1. There is little evidence that current DMTs are effective in people with progressive MS over the age of 55, if they have experienced no relapses or MRI activity for more than 2 years. There is also little evidence that stopping DMTs in this situation increases the risk of relapses or the rate of disease progression.
2. Few MS specialists would recommend discontinuing DMTs in people under the age of 45
3. There is some evidence that people with MS over the age of 60, regardless of disease type, may stop DMTs without experiencing an increase in relapses or disease progression
4. The need for DMTs (starting or stopping) should be assessed on a case by case basis in people between the ages of 45 and 60, depending on disease type, risk factors for relapses and progression and co-morbid conditions
5. There is a great need for controlled studies (i.e. where patients are randomly assigned to discontinuation or continuation of DMTs) assessing the risk and benefits of discontinuing disease modifying therapy in different groups of people with MS.​

​PLEASE NOTE: This information/opinions on this site should be used as an information source only.  This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment.  Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.

(Rip) Kinkel MD
Professor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego