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MS research update - What helps recovery from relapse? The personal perspective. - 11 September 2013

Summary

4,482 people in north America who had experienced a recent relapse answered questions about any treatment they received, how much symptoms had improved and whether they thought this was due to the treatment.

40% of people reported that their relapse was managed by observation only. Out of the active treatments, intravenous methylprednisolone was the most common with 25% reporting that they had received this treatment. Significant differences were seen in the treatments received by men and women.

The study showed that treating relapses resulted in better outcomes in the view of people with MS. However, one-third of people treated with the most common treatment, intravenous methylprednisolone, reported less than ideal outcomes in symptom improvement and the effect of treatment on their recovery. The researchers comment that there may be differences in how doctors and people with MS view the effectiveness of treatment.

Background

Relapses are a feature of MS for many people. A relapse is defined as a sudden episode of symptoms or disability. It lasts at least 24 hours but more commonly for a number weeks. To be considered a new relapse, it must occur at least 30 days after the start of a previous episode and not be caused by infection.

MS relapses are often treated with steroids. Previous studies have suggested that steroids are effective in speeding up recovery from relapse but that they make no difference either to the degree of recovery or to the long-term progression of the condition.

Recovery from a relapse can be judged in several ways. Firstly, there could be an assessment by a health professional and this would be an external view of a person's recovery. Alternatively, the person with MS could be asked about their view of how well they had recovered and this would be an insider's view. The second approach is the one taken in this study.

How this study was carried out

People with MS on the NARCOMS (North American Research Committee on Multiple Sclerosis) registry were asked about their most recent relapse. Questions included:

1. The treatment I received was...

2. As compared to the symptoms just before my most recent relapse, my overall MS symptoms one month after the relapse treatment were...

  • Options were: much worse, worse, a little worse, no change, a little better, better, or much better.

This question aimed to find out how much someone thought that their symptoms had improved or gone away.

3. As a result of the treatment, my recovery was...

  • Options were: much worse, worse, a little worse, no change, a little better, better, or much better.

This question aimed to find out the person's view on how much the treatment had made a difference to their recovery.

What was found

4,482 people who had experienced a recent relapse answered these questions. They varied widely in age (although most were aged 35 to 65) and in the number of relapses that they had experienced over their lifetime. On average, it was just under 12 months since their last relapse. More detailed clinical and demographic information can be see in Table 1 of the full text of this paper (PDF).

40% of people reported that their relapse was managed by observation only. Out of the active treatments, intravenous methylprednisolone was the most common with 25% reporting that they had received this treatment.

The age distribution of people treated with intravenous steroids was significantly different from those not treated with intravenous steroids. Younger people were more likely than not to receive either intravenous or oral steroids. More detailed information can be see in Table 2 of the full text of this paper (PDF).

Following the relapse, two thirds (68%) had a follow up appointment with a doctor, one in five (20%) were referred to physiotherapy, one in eight (12%) changed their disease modifying treatment, one in 13 (7%) were referred for occupational therapy and one in 50 (2%) were referred for speech therapy. Some people received more than one option.

Significant differences were seen in the treatments received by men and women. For example, 46% of men but 38% of women were in the observation only category; 21% of men but 26% of women received intravenous methylprednisolone; 12% of men but 17% of women received oral prednisone.

In response to the question "As compared to the symptoms just before my most recent relapse, my overall MS symptoms one month after the relapse treatment were...", a third of people (35%) reported worse symptoms, 25% reported no change, and 40% reported symptom improvement one month after treatment.

In response to the question "As a result of the treatment, my recovery was...", 15% of people reported that treatment made their recovery worse, 37% reported no change, and 48% reported treatment made recovery better. Men and women reported different levels of success. Men were more likely to report having worse symptoms than women and that treatment had been less successful.

There is a large amount of further analysis in the full text of this paper (PDF). Some of this may be relevant to the situation in the UK but some is likely to reflect the different health care systems in north America where this study was carried out.

What does it mean?

The study showed that treating relapses results in better outcomes in the view of people with MS. However, one-third of people treated with the most common treatment, intravenous methylprednisolone, reported less than ideal outcomes in symptom improvement and the effect of treatment on their recovery. The researchers comment that some doctors may have observed this in their practice but that there may be differences in how doctors and people with MS view the effectiveness of treatment.

The researchers also commented that it was difficult to compare the results of their study with those from previous studies as this study had used patient reported outcomes whereas most studies had used clinical measures, such as the EDSS score, assessed by a health professional.

Comment

The full text of the paper (PDF) provides much more information. Many of the conclusions may be relevant to the situation in the UK but some are likely to reflect the different health care systems in north America where this study was carried out, for example, the locations where treatment for relapses was provided.

Nickerson M, Marrie RA
The multiple sclerosis relapse experience: patient-reported outcomes from the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry..
BMC Neurol. 2013 Sep 10;13(1):119. [Epub ahead of print]
abstract
Read the full text of this paper (PDF)

More about relapses

The symptoms of MS vary from day to day for most people. On top of this, some people experience relapses which are new or much worse symptoms, lasting anything from one day to a number of weeks. Some relapses are relatively mild but some have a greater effect. Symptoms usually improve and sometimes go away completely.

It is not possible to predict when relapses will happen or how often. Every person's MS is different and so is every relapse. This is one reason that MS is often described as unpredictable.

If you have relapses, it is important to talk to your neurologist or MS nurse about disease modifying treatments (DMTs) if you have not done so already. These can decrease the frequency and severity of relapses and it is important to explore if they would be helpful for you. Similarly, if you have been taking a particular DMT for a while and you think it may not be working, or you are experiencing side effects, then you might like to have a chat with a health professional about switching to a different DMT.

Managing relapses

If you think that you may be having a relapse, the most important thing is to rule out an infection, like a urinary tract infection, as it can cause a flare up of symptoms which can seem like a relapse.

Managing relapses is a learning process and you will find out what works best for you. Treatment with steroids may help but they should not be given for too long or too frequently due to their side effects. The NICE Guideline recommends that courses of steroids are limited to a maximum of three times a year.

It's not possible to predict how long it will take for a relapse to subside so it may be a question of waiting it out. This can be very frustrating so be kind to yourself! Resting is really important especially total rest rather than watching TV or perhaps doing bits and pieces around the house.

Lifestyle issues are important in reducing the risk of relapses. A well balanced diet and regular exercise will promote good health and can help reduce the risk of relapse triggers such as infection. It is recommended that people with MS have an annual flu vaccination.

Research by topic areas...

Disease modifying treatments

Zettl UK, Bauer-Steinhusen U, Glaser T, et al.
Evaluation of an electronic diary for improvement of adherence to interferon beta-1b in patients with multiple sclerosis: design and baseline results of an observational cohort study.
BMC Neurol. 2013 Sep 6;13(1):117. [Epub ahead of print]
abstract
Read the full text of this paper (PDF)

Hegen H, Millonig A, Bertolotto A, et al.
Early detection of neutralizing antibodies to interferon-beta in multiple sclerosis patients: binding antibodies predict neutralizing antibody development.
Mult Scler. 2013 Sep 5. [Epub ahead of print]
abstract

Braune S, Lang M, Bergmann A; NTC Study Group.
Second line use of fingolimod is as effective as Natalizumab in a German out-patient RRMS-cohort.
J Neurol. 2013 Sep 6. [Epub ahead of print]
abstract

Rommer P, Dudesek A, Stüve O, et al.
Monoclonal antibodies in treatment of multiple sclerosis.
Clin Exp Immunol. 2013 Sep 4. [Epub ahead of print]
abstract

Assessment tools

Sonder JM, Burggraaff J, Knol DL, et al.
Comparing long-term results of PASAT and SDMT scores in relation to neuropsychological testing in multiple sclerosis.
Mult Scler. 2013 Sep 9. [Epub ahead of print]
abstract

Sonder JM, Holman R, Knol DL, et al.
Analyzing differences between patient and proxy on Patient Reported Outcomes in multiple sclerosis.
J Neurol Sci. 2013 Aug 15. [Epub ahead of print]
abstract

Carers

Acaster S, Perard R, Chauhan D, et al.
A forgotten aspect of the NICE reference case: an observational study of the health related quality of life impact on caregivers of people with multiple sclerosis.
BMC Health Serv Res. 2013 Sep 9;13(1):346. [Epub ahead of print]
abstract

Genetics

Muñoz-Culla M, Irizar H, Otaegui D.
The genetics of multiple sclerosis: review of current and emerging candidates.
Appl Clin Genet. 2013 Aug 8;6:63-73.
abstract

Psychological aspects

Cerasa A, Tomaiuolo F, Quattrone A.
Which is the goal of cognitive rehabilitation in multiple sclerosis: the improvement of cognitive performance or the perception of cognitive deficits?
Mult Scler. 2013 Sep 9. [Epub ahead of print]
abstract

Graziano F, Calandri E, Borghi M, et al.
The effects of a group-based cognitive behavioral therapy on people with multiple sclerosis: a randomized controlled trial.
Clin Rehabil. 2013 Sep 6. [Epub ahead of print]
abstract

Rosti-Otajärvi E, Mäntynen A, Koivisto K, et al.
Neuropsychological rehabilitation has beneficial effects on perceived cognitive deficits in multiple sclerosis during nine-month follow-up.
J Neurol Sci. 2013 Aug 17. [Epub ahead of print]
abstract

Physical activity

Smith CM, Hale LA, Olson K, et al.
Healthcare provider beliefs about exercise and fatigue in people with multiple sclerosis.
J Rehabil Res Dev. 2013 Aug;50(5):733-44.
abstract
Read the full text of this paper

Pilutti L, Dlugonski D, Sandroff B, et al.
Randomized controlled trial of a behavioral intervention targeting symptoms and physical activity in multiple sclerosis.
Mult Scler. 2013 Sep 5. [Epub ahead of print]
abstract

Nickel D, Spink K, Andersen M, et al.
Attributions and self-efficacy for physical activity in multiple sclerosis.
Psychol Health Med. 2013 Sep 5. [Epub ahead of print]
abstract

Crittendon A, O'Neill D, Widener GL, et al.
Standing data disproves biomechanical mechanism for balance-based torso-weighting.
Arch Phys Med Rehabil. 2013 Aug 31. [Epub ahead of print]
abstract

Prognosis

Dobson R, Ramagopalan S, Davis A, et al.
Cerebrospinal fluid oligoclonal bands in multiple sclerosis and clinically isolated syndromes: a meta-analysis of prevalence, prognosis and effect of latitude.
J Neurol Neurosurg Psychiatry. 2013 Aug;84(8):909-14.
abstract

Pathophysiology

Yea C, Tellier R, Chong P, et al.
Epstein-Barr virus in oral shedding of children with multiple sclerosis.
Neurology. 2013 Sep 6. [Epub ahead of print]
abstract

Sormani MP, Arnold DL, De Stefano N.
Treatment effect on brain atrophy correlates with treatment effect on disability in multiple sclerosis.
Ann Neurol. 2013 Sep 5. [Epub ahead of print]
abstract

Polak T, Zeller D, Fallgatter AJ, et al.
Vagus somatosensory-evoked potentials are prolonged in patients with multiple sclerosis with brainstem involvement.
Neuroreport. 2013 Mar 27;24(5):251-3.
abstract

Self-management

Malin SK, Cotugna N, Fang CS.
Effect of creatine supplementation on muscle capacity in individuals with multiple sclerosis.
J Diet Suppl. 2008;5(1):20-32.
abstract

CCSVI

Comi G, Battaglia M, Bertolotto A, et al.
Observational case-control study of the prevalence of chronic cerebrospinal venous insufficiency in multiple sclerosis: results from the CoSMo study.
Mult Scler. 2013 Sep 6. [Epub ahead of print]
abstract

Conference

Fernandez O, Arnal-Garcia C, Arroyo-Gonzalez R, et al.
Review of the novelties presented at the 28th Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) (II).
Rev Neurol. 2013 Sep 16;57(6):269-281.
abstract

Work

Pack TG, Szirony GM, Kushner JD, et al.
Quality of life and employment in persons with multiple sclerosis.
Work. 2013 Sep 4. [Epub ahead of print]
abstract

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