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SECTION B: Living with Relapsing Remitting Multiple Sclerosis

This page has information about:

  • Stages of Relapsing Remitting Multiple Sclerosis
  • Treatment options for living with Relapsing Remitting Multiple Sclerosis
  • Making treatment decisions

Stages of Relapsing Remitting Multiple Sclerosis

People have regular check-ups with MS services to see if their RRMS is stable, or getting worse. There are tests to check eyesight, arm and leg strength, balance, bladder and bowel function. Some people have brain scans using magnetic resonance imaging (MRI) to look for the effects of MS, such as a brain lesion or scar.

Over time, many people with RRMS shift to having another type of MS known as Secondary Progressive Multiple Sclerosis (SPMS).

These check-ups give health professionals and people with RRMS information about their disease activity to use when making treatment decisions together [17, 19-21, 23, 24].

RRMS stages can be known as:

Stable – no new relapses in the last 12 months
Active – at least two relapses in the last 24 months
Highly active – new or ongoing relapses in the last 12 months, when taking a disease modifying treatment like Beta-interferon.
Rapidly evolving severe – at least two disabling relapses and new brain scars in the last 12 months.

Treatment decisions can be difficult to make because of the way RRMS and symptoms change, the different types of RRMS medications , and changes in what people think is important to them [15, 27]. People may go through phases in their lives when their RRMS is controlled, then they have relapses, then the RRMS is controlled again, and so on.

This pattern means people go through times when they can get on with their lives as planned, and times when they adjust to coping with relapses and their symptoms. This website aims to help people with RRMS make the best treatment decision for them at this time, and sign-post what options may suit them better in the future.

Treatment options for people living with RRMS

People make many decisions to start, switch and/or stop treatments when managing their RRMS. There is no single best treatment option. People experience their RRMS and its treatment in different ways. As people get older, or have different experiences, their views about what treatments fit best into their life can change.

The three broad types of treatment plans are...

Symptom & Relapse Treatment options help people manage the symptoms and relapses from their RRMS. Examples include physiotherapy, psychological therapy, and occupational therapy to help with everyday function, fatigue, memory and strength problems, and medications for sensory or bladder problems. Sometimes relapses can be treated with steroids. Some people use exercise, diet and alternative therapies to cope with symptoms.

Disease Modifying Treatment (DMT) options are medications to reduce relapses, and to try to delay or stop people’s RRMS from getting worse.

People with RRMS take DMTs to stop their immune system or cells from attacking their nerves. People taking these medications have fewer relapses, and the relapses may not be as bad, as people who are not taking DMTs. These medications cannot cure RRMS or fix the damage to people’s nervous systems caused by their condition. These treatments may have side-effects or make it more likely a person will get another health problem. If people taking DMTs experience other symptoms and/ or a relapse, they may take symptom and relapse treatments at the same time.

Health and Wellbeing options are lifestyle and treatment options people choose to keep themselves well. People with RRMS can make lifestyle changes to help keep themselves as healthy as possible. Finding ways to manage stress, eat well, and keep the body and mind fit means people are less likely to get diseases like diabetes, heart disease, and cancer. Some people take treatments for other health and illness problems, for example in managing their depression, heart disease, or diabetes.

Making decisions: starting, stopping or switching treatment

People make treatment decisions by weighing up what is important in their lives now, what they want in the future, their experience of RRMS, and their views about treatment.

Thinking about the answers to the prompts below may help you plan treatments to fit in with your life now, and in the future.

1. Which answers describe best your health and lifestyle experiences over the last few months:

Over the last few months... Stable Getting better Getting worse
My lifestyle has been
My health has been
My RRMS symptoms have been

2. Which answers describe your reasons for deciding about treatments:

I am wanting a treatment to... Yes No Maybe
Manage my RRMS symptoms
Reduce my relapse number and severity
Slow down damage to my nerves
Help my health and wellbeing
Manage another health problem
Other

3. Which answers describe the type of options you are thinking about:

I am thinking about ... Yes No Maybe
Keeping the same treatments for my RRMS
Adding treatments for my RRMS
Switching treatments for my RRMS
Stopping treatments for my RRMS
Other