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MS research update - Why do people with MS want to change their disease modifying therapy? - 4 August 2014

Summary

There are an increasing number of DMTs (disease modifying therapies) available for the treatment of MS. Each of these drugs have known risks and benefits, but all are used to prevent relapses and slow the build-up of disability. Doctors could benefit from a better understanding of why people with MS wish to change their drugs, as this could help them initiate conversations and identify potential alternatives better suited to that person.

This study looks at the reasons why people who changed their DMT drug did so. 308 people in America who had recently changed their DMT, completed a questionnaire which collected information on their opinions of their current DMT, their previous DMT the reasons why they had wanted to change.

The study found that overall the most common reasons for wanting to change DMT was their doctor's recommendation, because they felt that the drug wasn't working for them, experiencing side effects or because of a dislike for injections or infusions. Many had changed to oral or infusion therapies.

The majority seemed to be happy with their change of medication, as nearly three quarters (74%) of participants said they would not consider switching back to their previous medication or trying something else. The authors suggest that a longer term follow up of these participants would be useful to see if they continue to be satisfied with the new drug they are taking and if they feel it works effectively for them.

Background

There are an increasing number of DMTs (disease modifying therapies) available for the treatment of MS. The beta interferons and glatiramer acetate have been available for almost 20 years. Newer therapies include those that can be taken orally, such as fingolimod or by infusion, such as natalizumab. Each of these drugs have known risks and benefits, but all are used to prevent relapses and slow the build-up of disability. Like all drugs, some are more suited to the individual needs of one person than another and trying to work out which drug would be the most appropriate and suitable for that particular person can be challenging. Factors such as side effects, how easy is it to take the medication and stick to the routine and how treatment will fit in with the person's lifestyle are typically considered when deciding on which drug.

Switching from one DMT to another has become popular, but little is known about the reasons why and the importance of this to people with MS. Doctors could benefit from a better understanding of why people with MS wish to change their drugs, as this could help them initiate conversations and identify potential alternatives better suited to that person. To help increase doctors understanding this study looks at the reasons why people who changed their DMT drug did so.

How this study was carried out

People with MS who are on the NARCOMS (North American Research Committee on Multiple Sclerosis) registry complete two surveys a year. The 691 registry participants who reported changing their DMT medication in either the spring or autumn 2011 surveys were sent an additional questionnaire to complete. To be included in this study the participant had to have a diagnosis of relapsing remitting MS and had changed their DMT after September 2010. 470 completed questionnaires were returned, of which 308 met the criteria for inclusion in the study. Of these 308 participants, 257 (83%) were female, the average age was 52 years old and the participants had MS for an average of 14 years (ranging from 1 year to 47).

The questionnaire collected information on their current DMT, the length of time they had used it, and how effective they felt it to be, as well as which DMT they had taken previously and how long they had taken that for. It also collected the main reason why they wished to switch DMTs, any additional reasons that contributed to their decision to change drugs and who had started the conversation about changing drugs, them or their doctor.

The DMTs were categorized as first-line injectables (interferon beta 1a, interferon beta 1b, glatiramer acetate), oral therapies (fingolimod) or infusion therapies (natalizumab, rituximab, alemtuzumab, daclizumab). Although it was found that no participant switched to rituximab, alemtuzumab, or daclizumab.

What was found

The study found that the most common previous DMTs had been the first line injectables (75%), followed by infusions (18%), oral therapies (3%) and other DMTs (4%). The most common current DMTs were the oral therapies (42%) followed by first line injectable DMTs (35%) and infusion DMTs (23%). Nearly three quarters (74%) of participants said they would not consider switching back to their previous medication or trying something else.

Half of the participants said they had started the discussion about changing DMT and the other half said that their doctor had initiated the conversation. For those participants who had started the conversation themselves, most reported deciding to ask to change drugs because of side effects or because they felt that the drug wasn't working effectively for them.

The study found that overall the most common reasons for wanting to change DMT was their doctor's recommendation, because they felt that the drug wasn't working for them, experiencing side effects or because of a dislike for injections or infusions.

What does it mean?

This study showed that the discussion about changing DMT was frequently started by the person with MS, although they still valued their doctor's opinion and recommendation regarding which DMT to switch to. The results showed that many participants switched from first line injectable drugs which have now been available for many years to newer infusion or oral DMTs. The majority seemed to be happy with their change of medication but the authors suggest that a longer term follow up of these participants would be useful to see if they continue to be satisfied with the new drug they are taking and if they feel it works effectively for them.

Salter AR, Marrie RA, Agashivala N, et al.
Patient perspectives on switching disease-modifying therapies in the NARCOMS registry..
Patient Prefer Adherence. 2014 Jul 4;8:971-9.
abstract
Read the full text of this paper

More about disease modifying therapies.

Disease modifying drugs work by interacting with different parts of the immune system to calm down the inflammation that causes MS relapses. Disease modifying drugs are not a cure for MS and currently can only reduce the number of relapses rather than stopping them entirely. However, by reducing the number and severity of relapses, some of these drugs have also been shown to slow the build up of disability.

There are an increasing number of disease modifying therapies available for the treatment of MS. This provides many people with other options if their current DMT is causing them problems. A drug that is suitable and effective for one person may not be right for another.

It is important to have realistic expectations about the drugs and what they might achieve. All of these drugs take several months to start working and show benefit in reducing the number of relapses. After starting treatment, relapses may stop altogether or still occur but at a reduced rate.

However, if after a period of time there is no obvious improvement, or the number and severity of relapses remains as it was before treatment, switching to another disease modifying drug may be an option.

A small number of people find that the side effects of a particular drug are unmanageable and do not improve or resolve over time. Some people may develop persisting high levels of neutralising antibodies. Again, switching to another drug may be a possibility.

The neurologist and MS specialist nurse will advise on eligibility and suitability for alternative treatments. Switching may involve a short 'drug holiday', to make sure that the previous treatment has been flushed from the body before starting the new drug.

You can read more about the disease modifying therapies in the A to Z of MS which links to our publication Disease modifying drugs and also MS Decisions where you can explore your drug options using the interactive tool. 

Research by topic areas...

Assessment tools

Pau M, Coghe G, Atzeni C, et al.
Novel characterization of gait impairments in people with multiple sclerosis by means of the gait profile score.
J Neurol Sci. 2014 Jul 19. [Epub ahead of print]
abstract

Devy R, Lehert P, Varlan E, et al.
Improving the quality of life of multiple sclerosis patients through coping strategies in routine medical practice.
Neurol Sci. 2014 Jul 27. [Epub ahead of print]
abstract

Watson TM, Ford E, Worthington E, et al.
Validation of mood measures for people with multiple sclerosis.
Int J MS Care. 2014 Summer;16(2):105-9.
abstract
Read the full text of this paper

Ghahari S, Khoshbin LS, Forwell SJ.
The multiple sclerosis self-management scale: clinicometric testing.
Int J MS Care. 2014 Summer;16(2):61-7.
abstract
Read the full text of this paper

Rudick RA, Miller D, Bethoux F, et al.
The multiple sclerosis performance test (MSPT): an iPad-based disability assessment tool.
J Vis Exp. 2014 Jun 30;(88).
abstract
Read the full text of this paper

Co-existing conditions

Gustavsen MW, Celius EG, Moen SM, et al.
No association between multiple sclerosis and periodontitis after adjusting for smoking habits.
Eur J Neurol. 2014 Jul 16. [Epub ahead of print]
abstract

Roshanisefat H, Bahmanyar S, Hillert J, et al.
Multiple sclerosis clinical course and cardiovascular disease risk - Swedish cohort study.
Eur J Neurol. 2014 Jul 17. [Epub ahead of print]
abstract

Disease modifying treatments

Seddighzadeh A, Hung S, Selmaj K, et al.
Single-use autoinjector for peginterferon-β(1a) treatment of relapsing-remitting multiple sclerosis: safety, tolerability and patient evaluation data from the Phase IIIb ATTAIN study.
Expert Opin Drug Deliv. 2014 Jul 29:1-8. [Epub ahead of print]
abstract

La Mantia L, Di Pietrantonj C, Rovaris M, et al.
Interferons-beta versus glatiramer acetate for relapsing-remitting multiple sclerosis.
Cochrane Database Syst Rev. 2014 Jul 26;7:CD009333.
abstract
Read the full text of this paper

Ratchford JN, Brock-Simmons R, Augsburger A, et al.
Multiple sclerosis symptom recrudescence at the end of the natalizumab dosing cycle.
Int J MS Care. 2014 Summer;16(2):92-8.
abstract
Read the full text of this paper

Glanz BI, Musallam A, Rintell DJ, et al.
Treatment satisfaction in multiple sclerosis.
Int J MS Care. 2014 Summer;16(2):68-75.
abstract
Read the full text of this paper

Márquez-Rebollo C, Vergara-Carrasco L, Díaz-Navarro R, et al.
Benefit of endermology on indurations and panniculitis/lipoatrophy during relapsing-remitting multiple sclerosis long-term treatment with glatiramer acetate.
Adv Ther. 2014 Jul 22. [Epub ahead of print]
abstract

Epidemiology

Melcon MO, Correale J, Melcon CM.
Is it time for a new global classification of multiple sclerosis?
J Neurol Sci. 2014 Jun 29. [Epub ahead of print]
abstract

Other

Marrie RA, Elliott L, Marriott J, et al.
Dramatically changing rates and reasons for hospitalization in multiple sclerosis.
Neurology. 2014 Aug 1. [Epub ahead of print]
abstract

Other treatments

Greco R, Bondanza A, Oliveira MC, et al.
Autologous hematopoietic stem cell transplantation in neuromyelitis optica: a registry study of the EBMT autoimmune diseases working party.
Mult Scler. 2014 Jul 30. [Epub ahead of print]
abstract

Pattee GL, Wymer JP, Lomen-Hoerth C, et al.
An open-label multicenter study to assess the safety of dextromethorphan/quinidine in patients with pseudobulbar affect associated with a range of underlying neurological conditions.
Curr Med Res Opin. 2014 Jul 28:1-11. [Epub ahead of print]
abstract
Read the full text of this paper

Karpatkin HI, Napolione D, Siminovich-Blok B.
Acupuncture and multiple sclerosis: a review of the evidence.
Evid Based Complement Alternat Med. 2014;2014:972935.
abstract
Read the full text of this paper

Physical activity

Salbach NM, Howe JA, Brunton K, et al.
Partnering to increase access to community exercise programs for people with stroke, acquired brain injury, and multiple sclerosis.
J Phys Act Health. 2014 May;11(4):838-45.
abstract

Klaren RE, Hubbard EA, Motl RW.
Efficacy of a behavioral intervention for reducing sedentary behavior in persons with multiple sclerosis: a pilot examination.
Am J Prev Med. 2014 Jul 25. [Epub ahead of print]
abstract

Sangelaji B, Nabavi SM, Estebsari F, et al.
Effect of combination exercise therapy on walking distance, postural balance, fatigue and quality of life in multiple sclerosis patients: a clinical trial study.
Iran Red Crescent Med J. 2014 Jun;16(6):e17173.
abstract
Read the full text of this paper

Learmonth YC, Paul L, McFadyen AK, et al.
Short-term effect of aerobic exercise on symptoms in multiple sclerosis and chronic fatigue syndrome: a pilot study.
Int J MS Care. 2014 Summer;16(2):76-82.
abstract
Read the full text of this paper

Prognosis

Raghavan K, Healy BC, Carruthers RL, et al.
Progression rates and sample size estimates for PPMS based on the CLIMB study population.
Mult Scler. 2014 Jul 28. [Epub ahead of print]
abstract

Psychological aspects

Farez MF, Crivelli L, Leiguarda R, et al.
Decision-making impairment in patients with multiple sclerosis: a case-control study.
BMJ Open. 2014 Jul 29;4(7):e004918.
abstract
Read the full text of this paper

Milanlioglu A, Ozdemir PG, Cilingir V, et al.
Coping strategies and mood profiles in patients with multiple sclerosis.
Arq Neuropsiquiatr. 2014 Jul;72(7):490-5.
abstract
Read the full text of this paper

Rehabilitation

Plecash AR, Leavitt BR.
Aquatherapy for neurodegenerative disorders.
J Huntingtons Dis. 2014 Jan;3(1):5-11.
abstract

Asano M, Raszewski R, Finlayson M.
Rehabilitation interventions for the management of multiple sclerosis relapse: a short scoping review.
Int J MS Care. 2014 Summer;16(2):99-104.
abstract
Read the full text of this paper

Gatti R, Tettamanti A, Lambiase S, et al.
Improving hand functional use in subjects with multiple sclerosis using a musical keyboard: a randomized controlled trial.
Physiother Res Int. 2014 Jul 7. [Epub ahead of print]
abstract

Symptoms and symptom management

Asano M, Berg E, Johnson K, et al.
A scoping review of rehabilitation interventions that reduce fatigue among adults with multiple sclerosis.
Disabil Rehabil. 2014 Jul 28:1-10. [Epub ahead of print]
abstract

Sanford M.
OnabotulinumtoxinA (Botox ®): a review of its use in the treatment of urinary incontinence in patients with multiple sclerosis or subcervical spinal cord injury.
Drugs. 2014 Jul 25. [Epub ahead of print]
abstract

Gunnarsson S, Samuelsson K.
Patient experiences with intrathecal baclofen as a treatment for spasticity - a pilot study.
Disabil Rehabil. 2014 Jul 23:1-8. [Epub ahead of print]
abstract

Caminiti F, De Salvo S, De Cola MC, et al.
Detection of olfactory dysfunction using olfactory event related potentials in young patients with multiple sclerosis.
PLoS One. 2014;9(7):e103151.
abstract
Read the full text of this paper

Fragalà E, Privitera S, Giardina R, et al.
Determinants of sexual impairment in multiple sclerosis in male and female patients with lower urinary tract dysfunction: results from an Italian cross-sectional study.
J Sex Med. 2014 Jul 11. [Epub ahead of print]
abstract

Work

Frndak SE, Kordovski VM, Cookfair D, et al.
Disclosure of disease status among employed multiple sclerosis patients: association with negative work events and accommodations.
Mult Scler. 2014 Jul 28. [Epub ahead of print]
abstract

Bøe Lunde HM, Telstad W, Grytten N, et al.
Employment among patients with multiple sclerosis-a population study.
PLoS One. 2014;9(7):e103317.
abstract
Read the full text of this paper

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