Friday, October 12, 2012

Will we all develop progressive MS?

Julie Stachowiak, PhD
Writer, ms.about.com

 
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.

15 comments:

  1. YEAH!! does this mean that I can stop my medication?

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  2. Today the average age is 45 and yesterday I read the average age is 35 not sure what to believe anymore.

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    1. Where did you hear the average age was 35? Just trying to look into it myself too. May have been older research.

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    2. Sorry average was actually 39 years old when diagnosed. This was what I read on the CTV news site in regards to the Liberation Therapy trial.

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    3. I have PPMS. My dr said that I've had RRMS and that's why I worked for years. As you get older, MS progresses and so it brought me to this stage.

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    4. Neuro says I'm Chronic MS and SP. I say I'm PP. I've had wee ups and downs but not what I call relapses. NO drugs caused changes so PP seems correct to me.

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  3. I'm 46yo and glad to hear that as well but not going to stop taking treatment.

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  4. This is exciting news. My partner is almost 55, and has had RRMS for about 6 years. Her neurologist recently told her pretty much the same thing - that as long as she continues her treatment (she takes Gilenya), she probably won't develop any more severe symptoms than she experiences now (occasional "brain-fog", heat intolerance, balance issues).

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  5. Interesting but I wonder how this relates to age of onset. This is good news for middle or older aged people with MS but how does it apply to those of us who were Dx in younger years?

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  6. When you are diagnosed. You may not know how long you have had the disease for. Its all such a guessing game/waiting game.

    Great news however if its accurate.

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  7. I was diagnosed at 25. Does this make me more susceptible?

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  8. I'd be really interested to see if they looked at people diagnosed later in life too. I was diagnosed at 39, but now at 42 seem to be slowly losing some capabilities.

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    1. Yes, I would be too. I was diagnosed with RRMS 4 yrs ago aged 50. Started with Optic Neuritis and I seem to be stumbling more, and soo soo tired. My Neuro told me when I was diagnosed, that I had a bad prognosis due to my age and the amount of lesions in my brain. Mmmm. makes you think dosent it.

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  9. I think there are a few confounders in this study, at least the way it is presented. I've always wondered if the reason SPMS and PPMS were diagnosed in those over 50 was that they had already lived with RRMS for years and just wrote off the symptoms as something else. (or their doctors did) - I was diagnosed at age 50 and have only had small flare-ups, but my abilities have continually decreased since then without appreciably getting better. Thought diagnosed with RRMS, I wonder now if it was something else entirely, or SPMS and my past "issues" were flare ups before remissions. Hard to know.

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