“I was told I’m in a flare-up,” a newly diagnosed person with multiple sclerosis wrote to a Facebook group the other day. She said the flare-up had been going on “for a while now” and wondered when she could expect it to calm down.
After I calmed down from the thought of an MS newbie not knowing the basics of what an MS flair is all about, I realized that others are probably in the same boat. So here are some MS flare-up facts:
What’s in a name?
You can call it a flare-up, relapse, or exacerbation — they’re all the same. An exacerbation is what it was called when I was diagnosed with MS in 1980. I guess it sounds more scientific than the other terms. I think relapse is a better description, though, because it’s what actually happens to someone with relapsing-remitting MS: Symptoms act up for a while and then ease, or remit. Flare seems to be the current favorite term, meaning that symptoms flare up for a while.
By the way, The Consortium of Multiple Sclerosis Centers prefers the simple term “relapsing MS” rather than relapsing-remitting MS. This underscores that MS disease activity continues even though the relapse has eased and progression may not be evident.
Is this really a flare?
There are flares and there are pseudo-flares. In another social media group, someone wrote that she was having a pseudo-flare that lasted about 40 days. That’s not pseudo, that’s the real thing.
A pseudo-flare is triggered by one or more external factors — a hot day, a fever, or stress, for example. A couple years ago, the stress of having to take a driving test on a hot day at age 72 caused me to have a pseudo-flare. That afternoon, my fatigue kicked up and booted me into bed by 8 p.m. The next morning, it was difficult to get out of a chair, much less stand or walk. But I was back to my normal MS self by the end of the day.
In a real flare, new symptoms appear or old ones worsen. They last for at least 24 hours and can’t be explained away by things like a change in body temperature, an infection, or stress. Sometimes it’s over in a few days. Sometimes a flare can last a couple of months. A flare lasting over a month isn’t pseudo — it’s the real McCoy.
What can you do about it?
The number of flares can be reduced by using one of the many available disease-modifying therapies (DMTs). When they do occur, their symptoms can be limited, and sometimes reversed, by steroid treatments. These medications include Solu-Medrol (methylprednisolone), dexamethasone, and prednisone.
For several years after I was diagnosed (way before any DMTs were approved), my flares were treated with several days of Solu-Medrol infusions, followed by a tapering down with prednisone pills for about a week. The purified hormone Acthar Gel is sometimes used when steroid treatments are ineffective.
My steroid treatments certainly helped, but steroids can cause bone loss, and I’m concerned that the sporadic hip pain I now have could be related to their use. So, as with any treatment, the benefits and risks need to be weighed. And as always, consult your healthcare team before taking any medications or making any adjustments to your treatment regimen.
Since flare-ups are common in MS, understanding whether what’s happening is a pseudo-flare or the real thing should help you decide whether or not it’s time to call your neurologist and seek treatment.
(A version of this post first appeared as my column on the MS News Today website.)
