Will we all develop progressive MS?

This is a question that lurks in the minds of many people diagnosed with relapsing-remitting MS (RRMS). For many of us, every twinge brings the worry that this is the beginning of progression to secondary-progressive MS (SPMS). New research indicates that as we age with RRMS, we may not have to worry about this quite as much.

An estimated 85% of people living with multiple sclerosis (MS) are initially diagnosed with RRMS. Some of these people will eventually develop secondary-progressive MS, which is characterized by a more steady progression of symptoms and disability and fewer or no relapses.
 
It used to be assumed that 80 to 90% of people with RRMS would eventually develop SPMS within 25 years (50% within 10 years) of diagnosis, although people living with MS were not followed for a sufficient length of time to really know what was happening.
 
SPMS is diagnosed when a person who was initially diagnosed with RRMS has worsening symptoms and/or disability without relapses for 6 months or more.
 
Collaborating researchers from Turkey, Lebanon and the US wanted to determine the percentage of people with relapsing-remitting MS that will never develop secondary progressive (SPMS). They combined two databases of people living with MS in order to derive the information. Of these people, approximately 30% had taken disease-modifying therapy.
 
The researchers found that our age impacts our chances of developing progressive MS. SPMS is typically diagnosed at an average age of 45 years, plus or minus 10 years, regardless of when people are diagnosed with RRMS. Interestingly, primary-progressive MS also tends to be diagnosed at the same age.
 
What does the "age effect" of the risk of progressive MS mean in terms of risk of developing SPMS?
  • Although it seems logical that the longer you live with RRMS, the closer you may be getting to converting to SPMS. Once you are older than 45, this does not seem to be the case. In fact, the opposite is true. 
  • Once a person with RRMS is older than 45, their risk of converting to SPMS drops to 35%. 
  • A person older than 50 only has a 20% risk of developing SPMS. 
  • After age 60, the risk of SPMS conversion drops to 7%. 
  • After 75 years of age, if a person with RRMS has not developed SPMS, it is extremely unlikely (less than 1% chance) that they will develop SPMS. 
  • Based on the data, researchers estimate that between 43-38% of people with RRMS will never develop SPMS, even if they are followed until they are 75 years old.

I don’t have to tell you that this is good news for those of us who are middle-aged and living with relapsing-remitting MS. In my opinion, the fact that our risk of developing progressive disease actually continues to decrease as we age is one of the few positive side effects of getting older.
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Julie

Julie Stachowiak, PhD

Julie is the author of the Multiple Sclerosis Manifesto, the winner of the 2009 ForeWord Book of the Year Award in the Health Category. She is an epidemiologist who is also a person living with MS, Julie has an in-depth understanding about current research and scientific developments around MS. She also has first-hand knowledge of the frustrations and anxiety surrounding the disease, as she had MS for at least 15 years before receiving a diagnosis in 2003 and has had several relapses since her diagnosis.

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    6 Comments

  • Christine J   Mar 14, 2016 4:53 PM
    Thank you for this post! My daughter was recently diagnosed with RRMS.
  • Ashley S   Nov 23, 2016 7:39 AM
    This is such wonderful news to read! Diagnosed with RRMS 10 years ago, at the age of 19 and this is finally a piece of good news!
  • Yaniv berlin   Feb 8, 2018 6:12 PM
    Can you give reference for this study. Sounds very encouraging
  • Toylen   Jul 11, 2018 8:55 PM
    Good Evening, I was recently diagnosed with RR multiple sclerosis and 2017 of November. I get anxiety a lot and is very scary because I always think of one day I may be never to walk I get anxiety a lot very scary because I always think of one day I maybe never to walking again. I don't know how to cope with it and I cry every night
  • Shay   Jan 11, 2019 7:44 AM
    I was diagnosed when I was 26 yo. I've had it since I was 21. I am now 48 years old. I am on Tysabri. I still have RRMS.
  • Katharine E.   Feb 24, 2019 1:54 PM
    Re: Will we all develope progressive MS, Oct 2012,
    Hi Julie- hope you are doing well these days. I'm curious to know if you can point me to more recent study (within the last 5 years about percentages for older persons (60s)with MS, reaching plateau. Could you send me any data you have.
    Thank you
    Katharine E.
    MS dx 2016 @ age 60