Not long after a diagnosis, patients with relapsing-remitting multiple sclerosis (RRMS) learn to speak the language of symptoms, relapses, exacerbations, flare ups, steroids, disease-modifying therapies, remissions, and more. It becomes quite the whirlwind. Part of the learning curve of a newly diagnosed patient is recognizing when it is time to call the neurologist if a suspected relapse or exacerbation occurs.
Relapses are unpredictable and distinct worsening of neurologic function, which may involve new MS symptoms or an intensifying of older symptoms. For patients with RRMS, relapses are typically followed by periods of partial or complete recovery, but residual symptoms may remain, causing greater disability over time.
A relapse is one indication that a person’s disease is active, and the acute impact of a relapse can last for days, weeks or months. Symptoms may range from numbness and tingling to mobility difficulties, vision problems, increased bouts of fatigue and cognitive dysfunction.
For an attack to be considered an MS relapse, it must meet the following criteria:
- New symptoms appear or old symptoms of MS become worse.
- The episode of new or worsening symptoms lasts more than 24 hours.
- Symptoms of the relapse do not occur within 30 days of a previous relapse.
- There is no other explanation for the symptoms.
Treatment for relapses typically involves a course of high-dose intravenous steroids to reduce inflammation in the central nervous system and help speed relief of relapse-related symptoms. Some neurologists may have differing opinions as to when to treat a relapse, so patients may feel there is no reason to call the doctor’s office if the symptoms are relatively mild and do not significantly interfere with normal activities. Or patients may feel they won’t be taken seriously by the doctor so they don’t bother to call.
However, every relapse is an important event to acknowledge and report. Even if a patient does not need or want steroids, it is recommended that his fluctuating symptoms be documented in his or her medical record. Often treatment decisions are made by examining the patient’s medical history, including the number, frequency, and severity of relapses. Although no disease-modifying therapy (DMT) has been shown to be 100 percent effective in preventing relapses, experiencing too many (even small ones) may indicate that the patient’s DMT is not working as well as it should.
If a patient is not following a DMT, relapses are a sure indication that he or she should consider starting long-term therapy to protect against accumulated disability and increase the chances of maintaining physical, social, and financial independence for as long as possible. Of course, DMTs are not the only approach patients can take to protect themselves, but they complement any lifestyle changes patients make to stay healthy and any rehabilitation strategies they can incorporate into their overall treatment regimen.
It is common to be uncertain of exactly when to call the neurologist with suspicions of a relapse. I will call if new or worsening symptoms persist over a couple of days. If in doubt, patients should make the call. It is better to act quickly to limit the ongoing inflammation than to wait to see just how bad the symptoms might get. Just as you wouldn’t wait until a small leak in the roof of your home turns into a large gaping hole, patients shouldn’t delay until relapse symptoms have become overwhelming. My neurologist believes that earlier treatment with steroids is more effective and, with experience, patients may begin to recognize the first signs that a relapse is brewing in their body.
In a recent study in the U.K., 103 MS patients (77 percent female) who had completed three years of DMT treatment were asked to answer questions related to their most recent relapse. Twenty-eight percent of respondents had not reported their most recent relapse to their doctors or nurse, and 46 percent admitted to having had a relapse that they did not report. The main reasons given for not reporting relapses were that patients considered the symptoms too mild and/or they did not feel there was anything their health care providers could do.
Two-thirds of the respondents were employed at the time of their most recent relapse and based on their responses, it had a significant financial impact. Sixty-seven percent of the employed respondents said they took time off work, while 48 percent temporarily reduced their hours following their most recent relapse. Eight percent permanently reduced their work hours, and 10 percent gave up work entirely. Sixty-six percent needed extra support taking care of dependents and undertaking routine daily tasks during their most recent relapse. Nearly one-third (31 percent) reported a reduction in family income and for 22 patients who supplied details, the mean reduction in income per month was £441 (approx. $710).
Of the 76 patients who were on DMTs at the time of their most recent relapse, 36 percent reported that they were more likely to be compliant with their DMT treatment following the relapse and 11 percent less likely. Despite the financial, physical, and social impact, relapses seemed to have little impact on patients’ satisfaction with their DMT, with only 17 percent reporting greater dissatisfaction. Only 10 percent said they were more satisfied. Perhaps this is due to the fact that patients understand that DMT treatments do not eliminate the occurrence of relapses, but they are meant to reduce the number and frequency of relapses.
Currently, disease progression in MS patients is measured by physical disability, lesion activity and brain volume loss (atrophy), as measured by MRI, and the number of relapses experienced over time. Neurologists and MS nurses will make clinical decisions after monitoring and evaluating disease progression.
With the large number of DMT treatments now available for relapsing forms of MS, patients have more choices than ever. But the best decisions regarding treatment choice, including changing treatments, can be made only if the doctor and patient have the complete picture. Make sure your medical records provide the most complete representation of your MS. Be honest with your health care team, even when you doubt that anything can or should be done differently.
Duddy M, Pulfer A, Oswald L. A UK-based study of the impact of relapse in people with relapsing remitting multiple sclerosis (RRMS) early in the course of first disease modifying therapy. Abstract P590 and poster presented at 29th ECTRIMS Congress, Copenhagen, Denmark, 2-5 October 2013.
Edan G. There is no such thing as a mild MS relapse. The mild relapse in an Anglo-Saxon delusion - Yes. Mult Scler July 2012; 18(7):927-929. doi: 10.1177/1352458512450090.
Hirst CL, Robertson NP. There is no such thing as a mild MS relapse. The mild relapse in an Anglo-Saxon delusion - No. Mult Scler July 2012; 18(7):925-926. doi: 10.1177/1352458512450089.
Hutchinson M. There is no such thing as a mild MS relapse. The mild relapse in an Anglo-Saxon delusion - Commentary. Mult Scler July 2012; 18(7):930-931. doi: doi: 10.1177/1352458512450091.
New data highlight significant hidden impact of relapses on people with multiple sclerosis. Medical News Today, October 7, 2013.
Detection and importance of relapses. Multiple Sclerosis Research Blogspot, August 12, 2013.
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.