During my first relapse, I remember asking my neurologist lots of questions, including what my future held in terms of relapses, based on what he had seen.
He was honest with me, saying that he didn't know and making some joke about his crystal ball being lost. Of course, I was a little emotional about the whole thing, being in the middle of a course of Solu-Medrol, which left me shaky and anxious. I wanted to know what the likelihood was that I would have relapses more frequently as time went by. I just wanted to prepare myself and my loved ones for what the future held in terms of relapses.
It was an impossible question, I now realize, especially since I wanted a very specific answer about my own situation. However, data is becoming available that might give us clues as to how relapse patterns shift as we age.
One group from the UK, has systematically looked at the relapse pattern among 1534 patients and the findings are fascinating:
- People age 29 and younger had the most relapses, with an annualized relapse rate of 0.49 – this translates into one relapse every two years. The frequency of relapses dropped as people got older, and people older than 60 only had .06 relapses per year. To quantify this number, think of this as 6% chance of having a relapse in a given year or one relapse every 16 years. *
- People tended to have many more relapses early in their disease (or sooner after diagnosis) than those who had the disease for a longer time.
- Women had more relapses than men.
Interestingly, the researchers asked people to fill out surveys about their relapses and then compared them to medical records. It turns out that older people tended to overestimate the number of relapses that they had, while the younger people accurately reported relapses.
So, what does this mean in real life? The authors of the study say that "treatments which are directed towards relapse reduction are likely to be most effective if targeted at those patients under the age of 30 and their impact will reduce rapidly with age and disease duration."
This does NOT mean, of course, that those of us over 30 should consider stopping our disease-modifying therapy. Remember, these are rates that apply to a large study population, averaged out among many people, so they can't really tell us specifically about our own situation. However, what this data may provide, especially when combined with other factors, is another piece in the puzzle of selecting the right treatment for the right person as we move into the era of "personalized medicine" for MS.
* I was unable to determine if part of the reason for this drop in number of relapses had to do with a number of people moving into secondary progressive MS as they aged and lived with the disease longer. Once people are classified as having secondary progressive MS, they typically experience far fewer relapses, if any.