Forum

Time between flares

Hi all

I just wondered if you have rrms, what is the longest you have gone without a flare? Also is it possible to have a large flare and still have a long time between relapses. Think my ex who has it has gone a year between relapses. I know everyone’s different/

Thanks

Kat x

Hi Kat,

Sorry, this is a “how long is a piece of string?” question.

I don’t want to tempt fate or anything, but currently 4.5 years and counting - don’t think I’ve had another since diagnosis in fact.

I do think, with hindsight, I had a lot more before diagnosis, that I’d managed to kid myself were nothing, and so never went to the doctor’s about.

Actually, this pattern is not unusual - most people are diagnosed when disease activity is at a peak (if not, they probably wouldn’t have been feeling ill enough to go to the doctor), and the tendency over the years is for relapse activity (but not the disease itself, unfortunately) to taper off.

This is only a typical pattern, NOT a rule or guarantee, so I’m certainly not saying anyone whose relapses went the other way is making it up or anything.

You see what I mean about: “How long is a piece of string”?

I think the “average” relapse rate is about one every year to 18 months, but individuals can differ wildly from the average - in either direction! Also the relapse rate need not remain constant, so you can’t predict when the next one is due by examining the spacing so far. Luckily, a positive aspect of this is that is does not mean that one must be due, because you haven’t had one for ages. If it did, I’d be panicking by now!

There is some evidence that the better you do, the better you do, kind of thing - i.e. usually the best guide to how it’s going to be is how it already has been. Absolutely NOT a guarantee, but a bit like the British weather - could be anything, but if you want to have a guess at how it will be tomorrow, look at how it was today!

Does that help at all?

None of us can predict the future (that goes for healthy people too, by the way), so the only advice I can really give is to try to take each day as it comes. It’s futile to try to calculate when the next relapse is “due”, although we have had some amusing stories (not so amusing for them at the time) of people being asked - typically by work - when their next one will be! If we could work out that, we could plan around them quite nicely, couldn’t we?

Tina

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