Secondary Progressive MS 2017

Secondary progressive
multiple sclerosis
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Introduction
Over time, many people originally diagnosed with relapsing remitting
multiple sclerosis will find that the pattern of their MS has changed
and that they now have a type known as secondary progressive
MS or SPMS. This transition can be a challenging time, requiring a
different approach to managing the condition and possibly contact
with a different range of health and social care professionals.
This book is written as an introduction to secondary progressive

MS – both for those living with the condition and for their family
and friends. It aims to give an outline of what is happening in this
type of MS, how it is identified and why making a diagnosis is
not straightforward. The book also looks at how rehabilitation is
used in the management of the condition and some of the health
professionals who may be involved.
Sometimes thought of as a neglected area of MS, interest in finding

ways to treat progressive MS is increasing and the book looks at
some of the research areas currently being explored.
The text is illustrated with the comments and experiences of health

professionals and people who live with secondary progressive MS.
If you have specific questions on any aspect of MS, contact

our Enquiry Service on 0800 032 3839 or
infoteam@mstrust.org.uk
3 telephone 0800 032 3839

Contents
Introduction 3
1. What is secondary progressive MS? 6
2. Diagnosing secondary progressive MS 12

• Things that can make the change hard to spot
• Sustained progression
• How is secondary progressive MS diagnosed?
• Managing the transition
3. The transition to secondary progressive MS 17

• The effect of words
• What the future holds
• Stopping disease modifying drugs
• The role of the MS nurse
4. Coming to terms with the transition to

secondary progressive MS 21
• Gaining psychological support
• Acceptance and commitment therapy (ACT)
5. Managing secondary progressive MS 28

• Drug treatment
• Self-management
• MS nurses
• Support from specialist health services
• Rehabilitation
• Prevention of complications
6. Research into secondary progressive MS 39

• Collaboration in research
• Future research priorities
• Neuroprotection
• Repairing and replacing myelin
• Trials of disease modifying drugs
7. Tips for coping with secondary progressive MS 46
8. Living with secondary progressive MS 48

• Living well – health awareness, activity, diet
• Work
• Welfare benefits
• Maintaining social relationships
• Reflections on living with secondary progressive MS
9. More information 55
• Other MS Trust publications you may find helpful
• Online support groups
• Benefits and legal advice
• Getting around
• Equipment and adaptations
• Relationship support
• Health and social care information and carer support
• Holidays
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1. What is secondary progressive MS?
MS is a complex and unpredictable condition that varies widely from

person to person and does not follow a set pattern. However, there are
a number of ‘types’ of MS that have been used to try to broadly group
individuals in accordance with how the condition has developed.
Originally MS was classified into two main clinical subtypes:
• r elapsing remitting MS – characterised by periods when

symptoms flare up (relapses) followed by periods of good
or complete recovery (remission)
• p
rogressive MS – where progressive deterioration occurs over
months or years.
However, over the years clinical evidence pointed to there being

three main subtypes of MS. As well as clinical differences being
noted within the group with progressive MS, there were also found
to be differences on magnetic resonance imaging (MRI) scans of
the brain. Therefore, in 1996 following the results of an international
survey, the National Multiple Sclerosis Society Advisory Committee
on Clinical Trials of New Agents in MS proposed that the group
of people with progressive MS should be further sub-divided to
distinguish between those with progression that occurred primarily
from the outset of the condition – primary progressive MS – and
those whose progression followed on secondarily after an initial
relapsing remitting course – secondary progressive MS. They
also recommended the inclusion of progressive relapsing MS
for those with progression from the outset of the condition who
also experienced occasional relapses. In 2013, following the results
of a follow up survey, the Committee recommended that clinically
isolated syndrome (CIS), the first episode of neurological symptoms
a person experiences lasting at least 24 hours, should be added as
a new subtype.
They also recommended that progressive relapsing MS be removed
as a subtype and that additional descriptions be added to each of
the three main subtypes of MS.
Multiple Sclerosis type descriptions
Health professionals may Type of MS these

describe MS as being descriptions are used for
active
showing evidence of new relapses or Relapsing remitting MS
lesions on MRI scans over a specific Primary progressive MS
period of time characterised by Secondary progressive MS
demyelination and inflammation
not active
showing no evidence of new Relapsing remitting MS
relapses or lesions on MRI scans Primary progressive MS
over a specific period of time Secondary progressive MS
with progression
showing evidence of worsening Primary progressive MS
symptoms over a specific time Secondary progressive MS
period with or without a relapse
possibly due to loss of axons (nerves)
without progression
where disability and symptoms are Primary progressive MS
not getting worse over time Secondary progressive MS
worsening
disability has increased over time Relapsing remitting MS
because of incomplete recovery from
a relapse, possibly due to loss of
axons (nerves)
stable
disability is not increasing over time Relapsing remitting MS
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Change from relapsing remitting MS to Secondary
progressive MS
RRMS Transition from SPMS

RRMS to SPMS
Without
With
progression
Active
progression
Disability
Not active
Active
Active
With progression
Active
Worsening
Active
Stable Stable Not active

Not active
Not active Not active
Time
Secondary progressive MS (SPMS):
“Initial relapsing remitting disease course followed by

progression with or without occasional relapses, minor
remissions, and plateaus.”
People with relapsing remitting MS often go on to develop a

progressive form of the condition. Whilst the severity and frequency
of relapses decrease or even stop altogether (here MS has changed
from active to not active), the level of permanent disability
increases over time (moving from worsening in relapsing remitting
MS to being with progression in secondary progressive MS).
This can be explained because there are two underlying processes

at work in MS:
• inflammation around nerves, which is associated with the

relapsing remitting pattern
• destruction of nerve fibres, which is associated with progression.
Current thinking is that both processes occur early in the condition,

though for most people inflammation is more prominent at first.
Inflammation
For reasons that are not yet understood, when someone has MS,
cells in their immune system attack myelin – the layer of fatty protein
that surrounds nerve fibres (axons) in the brain and spinal cord
(central nervous system) – and the cells (oligodendrocytes) that
make and maintain the myelin.
The attack on myelin causes inflammation around the nerves,

which can be seen as white patches on an MRI scan. Once the
inflammation is over, it is possible for damaged myelin to be replaced
to some degree, a process known as remyelination.
This pattern of damage and repair is reflected in the relapsing

remitting type of multiple sclerosis with which most (85 in 100)
people are diagnosed. Inflammation is associated with attacks
of symptoms (relapses) that come on quickly and last for more
than 24 hours, though can persist for weeks or months. As the
inflammation dies down, symptoms recover to some degree
(remission). Although symptoms may not return to the same level
as before the relapse and may fluctuate between better and
worse days, the overall level of disability remains fairly constant
between relapses.
Loss of nerves
Over time, the ability to repair damaged myelin is lost, leaving

axons exposed and vulnerable. As axons carry nerve messages to
surrounding nerves, if they are destroyed, the connections are broken.
The brain can reroute nerve signals past areas of damage to some
degree, this is known as plasticity or neuroplasticity. However,
continuing damage to axons leads to the gradual increase of
symptoms seen in progressive MS.
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Inflammation Loss of nerves
nerve cell nerve cell
myelin myelin
axon axon
inﬂammation inﬂammation exposed axon exposed axon
For most people with relapsing remitting MS, the balance between
inflammation and loss of axons changes slowly over time. As loss
of nerve cells becomes more prominent, relapses happen less
often and eventually stop, but disability gradually increases as axon
loss continues. It is this change in balance from inflammation to
axon loss that causes the transition from relapsing remitting MS to
secondary progressive MS.
Age at onset
The longer someone has had relapsing remitting MS, the higher
the chance of it changing to secondary progressive. Older studies
suggest that about 20 years after the onset of MS, half of people
diagnosed with the relapsing remitting form will have reached
the transition to secondary progressive MS. Therefore, before
the development of the disease modifying drugs, half of people
diagnosed with relapsing remitting MS in their 30s would transition
to having secondary progressive MS by their 50s or 60s. As the
more effective disease modifying drugs are relatively new (less
than 20 years old) their impact on rates of progression are still
being studied.
It is possible, though much less common, for someone with
relapsing remitting MS to transition more quickly to secondary
progressive MS or for someone’s first diagnosis to be of secondary
progressive MS. This would suggest that multiple sclerosis activity
may have been taking place for several years before diagnosis
but lesions may have been in areas of the central nervous system
that didn’t lead to clinical symptoms, or symptoms had been put
down to other causes or not been troublesome enough to lead to a
diagnosis at the time.
For about 15 in 100 people with MS, the loss of nerve cells is the
main process from the start of their condition. In this case they are
diagnosed with a form of multiple sclerosis that is progressive from
onset and is known as primary progressive MS.
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2 Diagnosing secondary
. progressive MS
Identifying when multiple sclerosis has changed from a relapsing to
a progressive course is not straightforward. The change between
types is not a sudden switch but a gradual process where the
relapsing and progressive patterns overlap for a while.
There is no test to show that someone’s MS is now secondary

progressive. Diagnosis is often done by looking back at changes
across the previous year or so. The neurologist has to decide if an
ongoing, sustained increase in disability has occurred and that this
is due to the underlying MS and not to other factors.
Things that can make the change hard to spot

• Relapses
Recovery from a relapse is often not complete and the level of
disability might be higher once the relapse is over than it was
before. However, so long as the level of disability remains stable
between relapses, this is not considered to be MS progressing.
For multiple sclerosis to be classed as secondary progressive,
disability levels need to increase independently of any relapses
that occur.
While the relapsing and progressive patterns overlap, people

with secondary progressive MS can still experience relapses,
although these tend to become less frequent.
People may also experience ‘pseudo relapses’ a temporary

worsening of MS symptoms that may seem like a relapse but are
actually caused by other factors.
• Fluctuation in symptoms
MS symptoms do not stay constant, with some days better than
others. A run of bad days does not necessarily indicate that MS
is progressing.
• Other MS symptoms
The worsening of symptoms may not be due to the underlying MS.
For instance, bladder or bowel symptoms can make spasticity feel
worse. Similarly, symptoms such as pain, low mood and weakness
can feel more pronounced during periods of fatigue. A proper
assessment of symptoms to identify and treat any triggering factors
can help to manage the effects.
• Non-MS factors
Problems that are not part of MS, such as being under stress or
having an infection, can also make symptoms worse. Many people
with MS find that heat can worsen symptoms. A smaller proportion
find that cold weather can have a similar effect. When the trigger
factor is removed or reduced, symptoms may improve.
Sustained progression
Having taken account of these factors, the neurologist will be looking

for indications that an increase in disability has been sustained
(MS with progression). To be certain that disability has permanently
increased and that it is not a temporary worsening of symptoms
(active MS), the neurologist will look for changes that have not
improved for at least six months.
Not progressive Progressive
Although the level of disability might be higher after a relapse

than it was before, MS is not considered to be progressive
unless disability levels continue to increase independently
of relapses.
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The ability to walk shorter distances than before (increased difficulty
with walking) is often the thing that leads people to realise that their
symptoms have been gradually getting worse. However, it is not
the case that secondary progression only starts when someone
needs to use a walking aid or a wheelchair. Disability is not just
about mobility. Progression may be indicated by increases in less
visible symptoms such as bladder function, numbness or altered
sensations, or symptoms associated with memory or thinking.
Although none of the symptoms of MS are unique to the different

types of the condition, MRI scans of people with progressive MS
tend to show more signs of damage in the areas at the back and
base of the brain – the cerebellum and the brainstem – and in the
spinal cord. Symptoms associated with these areas – impaired
coordination, mobility problems, bladder and bowel symptoms and
tremor – tend to be more pronounced.
People with secondary progressive MS are also more likely to show

signs of damage and tissue loss in the centre of the brain in the
areas associated with cognition (memory and thinking). Cognitive
symptoms occur more frequently in secondary progressive MS than
in other types of multiple sclerosis.
How is secondary progressive MS diagnosed?
Jeremy Chataway, consultant neurologist
Defining secondary progressive MS is certainly not an exact science

from the clinical perspective. There is no test, such as an MRI
scan, which can say that someone has moved from the relapsing
remitting to the secondary progressive stage. In fact, we wouldn’t
expect that, this is a gradual process.
In addition, there is often a reluctance to talk about progression,

by both the doctor and the person with MS. Perhaps it conjures up
feelings of failure and disappointment, of fear, and lack of treatment.
Therefore, the discussion is often postponed or left hanging in
the wind.
The general test I use is to ask someone how they were two years
ago, for example, how far they could walk at a holiday destination
or taking the children to school. If that has changed considerably,
eg from 1.5km to 300m, then progression has taken place – they
have moved from relapsing remitting to secondary progressive MS.
It is important that other, non-MS conditions have been thought
about and excluded if necessary, eg a prolapsed disc.
Once the point has been reached of formally defining secondary

progressive MS, then I feel that a full re-evaluation of the situation is
required. Aspects such as spasticity, urinary function, depression and
fatigue may have been ignored in the relapsing remitting phase and
now it is a chance to put them right.
In secondary progressive MS the chance of relapse is lower. It might

be an opportunity to stop disease modifying drugs (and any side
effects) and to explore other approaches to treatment. In one way it’s
a new beginning and things might now be calmer as the ‘forest fire’ of
relapsing inflammation dies down.
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Managing the transition
Susan Hourihan, consultant occupational therapist
People with MS are often the first to be aware that their MS has
changed but are not always sure what that means.
Despite awareness of change, it may still come as a shock to be told

that their condition has been reclassified to secondary progressive
multiple sclerosis. Some people have never heard of the term and
others living with relapsing remitting MS had hoped or assumed that
their MS would stay in that stage of the disease.
Commonly, people describe that when they are told they have
secondary progressive MS, the information is given fairly casually
and with little time for discussion. Yet the individual often describes
this as a very significant moment, often as significant as the giving
of the original diagnosis of MS. It brings up similar feelings as when
first diagnosed and can sometimes be more upsetting if little is
offered to help them.
However, so much can be done at this point to help people stay

independent, manage symptoms and improve wellbeing. People
at the transition from relapsing remitting to secondary progressive
MS should speak to their MS nurse or other trusted healthcare
professionals. If an MS multidisciplinary clinic is available, ask
to be referred for an assessment. Alternatively, a review by a
neurologist, MS nurse, physiotherapist and occupational therapist
should be considered.
People may benefit from a review of their medications, mobility, every

day activities including work and leisure, benefits and symptoms such
as pain, bladder problems, spasms and mood. Specialist equipment
for mobility or for the home or workplace may be beneficial.
Most people want good, safe information on their condition and

psychological support. Everyone is different but an individual
assessment at this time can be really valuable to help manage the
condition and optimise independence.
3 The transition to secondary
. progressive MS
Sometimes difficulty in identifying when secondary progression has
started can lead to differences of opinion. The person who is living
with MS may feel their MS is progressive. The neurologist, who is
observing it in a clinical setting, may take a more cautious view and
prefer to monitor symptoms over a longer period.
“I had already suspected that my MS was now

secondary progressive.”
“I told my MS nurse that I thought it had changed, she

referred me to the neurologist who agreed with me.”
The effect of words
It is not unusual for people to think that progressive MS will be

worse than the relapsing type. The medical terminology is probably
unhelpful in this regard. Relapsing remitting and secondary
progressive simply describe the clinical nature of MS, not the
experience of the person living with the condition. Individuals with
either form will have better or worse experiences depending on the
nature of their symptoms and the impact these have on their lives.
The fact that one form follows the other does not necessarily mean
that their MS has become worse.
“Progressive sounds worse, even though it’s only a word for

what has been happening for a while.”
“People get hung up about the label of secondary

progressive MS. No matter how you label your MS it is not
going to make any difference to how you feel at this exact
point in time.”
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Some neurologists may prefer to refer to ‘active’ or ‘less active’ MS
as this better reflects the experiences of the individual regardless of
their type of MS.
What the future holds
It’s not possible to predict how an individual’s MS will develop.

Although progression does mean that disability will continue to
increase over time, it does not mean that someone will inevitably
experience a rapid decline in their health.
For many, the rate at which disability increases can be very gradual
and is only apparent when symptoms are compared with previous
years. The increase can also flatten out and people might find that
their symptoms remain unchanged for a while and, in some cases,
occasionally experience temporary periods of improvement.
Stopping disease modifying drugs
There are a number of drugs that have an effect on the underlying

course of MS, rather than acting as treatments for symptoms. The
fact that these disease modifying drugs are only licensed for treating
relapsing MS can sometimes be a problem at this stage.
Some doctors may be reluctant to make a diagnosis of secondary

progressive MS due to the lack of disease modifying drugs for this form.
Similarly, some people may be reluctant for their MS to be described

as secondary progressive as this may lead to them becoming
ineligible for the disease modifying drugs that they are currently
taking. Even if the drugs seem to be having little or no effect,
the thought of having to stop taking them can seem like another
milestone that has been passed in the course of the condition and
can be taken as a sign of failure or loss of hope.
This is not the case. The term ‘disease modifying drugs’ may be
misleading and might be taken to promise more than they actually
offer. The role of the currently available drugs is to reduce the
inflammation that causes relapses. None of them have been shown to
have an effect on the increase in disability that occurs independently
of relapses.
Given that the drugs are only effective for a particular type of MS,
discussion about the fact that treatment may eventually need to stop
at some point should take place when treatment is originally started.
This may not happen in all cases. Even if it does, the implications of
stopping treatment may be overlooked or forgotten, particularly if
there is a long period of time when the drugs are still being effective.
Stopping treatment merely means that the limited actions of

the disease modifying drugs are no longer relevant to what is
happening with an individual’s MS. Treatment in progressive MS
will focus more on managing the individual symptoms and on
rehabilitation approaches.
“Stopping disease modifying drugs is not a cul de sac,

just a bend in the road.”
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The role of the MS nurse
Wendy Wilson, MS nurse
It can be a very difficult time for people when they are told that their
MS has entered the secondary progressive phase. The realisation
that MS isn’t going to go away is perhaps the time when some
people need to emotionally readjust to living with a chronic illness, if
necessary with the help and support from their MS team.
Anecdotally, a common experience described by some people to

the MS team is that of feeling alone and abandoned. This may be
partly due to people in the relapsing remitting phase of the disease
being prescribed disease modifying drugs and being seen in an MS
clinic on a frequent basis for monitoring purposes.
It is important to remember that the MS nurse can help to prevent

these feelings. They can encourage people to say whether they
would still like to be seen for a six monthly review between their
annual appointments with their neurologist, and to reassess any
issues or concerns they may have. The MS nurse may also suggest
a referral to the local neurorehabilitation team, if there is one.
Similarly the MS nurse is ideally positioned to know what facilities
are available locally and can therefore signpost people to enable
them to get the most from local health and social services.
It is vitally important to emphasise when someone is told they have

secondary progressive MS not to give up hope and that they don’t
have to deal with it on their own. Maintaining regular contact with
the MS team can ensure people are kept informed of any promising
treatment options available to them in the future and they can be
reassured that they are not starting the next part of their MS journey
on their own.
“The MS nurses are the true heroes in MS care, without my

MS nurse I don’t know how I would have gotten to this stage,
they have a profound effect on our rehabilitation and thinking
on MS.”
4 Coming to terms with the
. transition to secondary
progressive MS
It is only natural to need a period of time to come to terms with

the change in diagnosis from relapsing remitting MS to secondary
progressive MS. It can often feel like a completely new diagnosis
and many people liken it to a bereavement. Just like bereavement
there are different stages to work through and there is no set time
for working through this process, it will be different for everybody.
The first stage is the initial shock; feelings of numbness, relief,

anger. The second stage is the process of mourning, the reality
of the diagnosis and what it might mean begins to sink in. Often
people feel low, irritable or angry at this time. They can become
withdrawn from family and friends and can be prone to sudden
outbursts of tears or to mood swings. Some people use this time
to grieve for their former self. The final stage is when you begin to
come to terms with the change in diagnosis and begin to see life in
a more positive way again. Although you may always feel a sense
of loss for your former self, you slowly and gradually learn to accept
and live with the change in your MS.
There can be some overlap between these different stages and you
may find you move from one stage onto the next and then back
again. Undoubtedly some days will seem worse than others, but
only once you have gone through this process are you able to move
on and begin the process of redefining yourself.
It is very important to remember that acceptance is not giving in or

giving up. Resignation to a situation takes no effort, but adapting
and accepting requires effort and work.
There are practical steps you can take that may help.
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Gaining psychological support
Dr Sarah Gillanders, clinical neuropsychologist
The transition from relapsing remitting to secondary progressive

MS is a stage of MS that many people find challenging. I have
often met people who felt able to cope with the relapsing stage of
the disease, but found the transition to secondary progressive MS
much harder. The challenges vary, but often people feel scared,
uninformed, powerless, vulnerable and generally overwhelmed.
It is worth remembering that there are others who manage this

stage of the condition without such distress.
So what is it that helps some people adjust more easily than others
and what can help the many people who find it difficult?
There are a number of ways of gaining psychological support when

coping with secondary progressive MS.
• Speak to your MS nurse or GP about a referral to a counsellor

or psychologist as talking therapies such as acceptance and
commitment therapy can be very helpful.
• Get answers to your questions. If there are things you are unsure
about then speak to an MS nurse or the MS Trust for more
information. Once you are informed then you are in a better
position to make decisions.
• Use the people around you. Supportive relationships with family

members, friends and professionals are incredibly useful in
helping you cope with the challenges of MS. It is easy to think
that you will overwhelm someone if you tell them how you feel.
More often than not, the people close to you will know when you
are upset and feel relieved if you can open up about how you’re
doing and what they can do to help.
• You may prefer to talk through your concerns with people outside
your family or circle of friends. There is a range of support groups
available, offering the opportunity to share ideas and let off steam
with people who have had similar experiences. Different people
will prefer different types of groups. Some may like the sociable
side of attending meetings and get-togethers. Others may prefer
the distance and anonymity offered by online groups.
• Advance care planning: some people find it helpful to explore

options, resources and services that are available in case more
support is needed in the future. Not only does this mean your
family and professionals know your thoughts, it can also make it
less stressful should a crisis ever arise.
Acceptance and commitment therapy (ACT)
Acceptance and commitment therapy (ACT, said as one word),

is a type of psychological therapy, similar to cognitive behavioural
therapy (CBT) that can be very helpful. ACT encourages people
to become more aware of their thoughts, feelings and beliefs and
the helpful and unhelpful ways they respond. It tries to support
people to become more aware of and in touch with what matters to
them (being a loving partner, a caring parent, a fun grandparent, a
committed friend, a challenging quiz master) and to help them find
ways to do those things, even with MS.
“I don’t like MS, I don’t want to have MS but this is how it is.
I can’t take my granddaughter to nursery like I used to but I
am great at reading stories with her, and she loves talking to
me about Disney princesses. I used to think that I wasn’t a
good grandma because I couldn’t do the physical stuff. Now
I know that I can do plenty of things that my granddaughter
loves and we are very close.”
Another useful tip is to notice when you are responding in an

unhelpful way; pause and decide whether you want to continue like
that or do something that is helpful to you.
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The following are examples of ACT exercises that
you could find helpful.
ACT exercises – Feelings

What are some of the thoughts, feelings and beliefs you have about
secondary progressive MS? What is it that is playing on your mind?
• Do you have thoughts of ‘why me?’, ‘this is not fair’, ‘my body is
failing’, ‘I am no longer the person I was’, ‘MS has robbed me of
so much’?
• Do you feel scared, angry, lost, frustrated, alone, vulnerable, judged?
• Do you have beliefs such as ‘the future is bleak’, ‘I couldn’t cope

if this got any worse’?
Exercise: write some of these concerns on paper.
ACT exercises – How do you respond?

When the thoughts, feelings and beliefs you wrote down pop up or
are playing on your mind, do you:
• Shout, lash out or make rude remarks?
• Become short tempered or tearful?
• Withdraw from others and perhaps miss appointments?
• Manage to tell someone how you feel, get some fresh air, listen to
music, make a cup of tea, go out with a friend or go shopping?
Exercise: w
rite down all the ways you respond when you
feel upset.
What are the consequences of your responses?
Looking at the list above, which ones are helpful and which are
unhelpful? If you struggled to think of any helpful responses then
take a moment to think about what might help you. How can you
look after yourself when you are finding things difficult?
Exercise: make a list of helpful and unhelpful responses.
ACT exercises – What next…

Now that you have a clearer idea of the helpful and unhelpful
ways you try to deal with the stress of the transition to secondary
progressive MS, how can you do more of the helpful responses?
What are some of the barriers that make it difficult?
“I can’t talk to my partner about this; they have enough on

their plate.”
“I would like to get more fresh air but I tire too quickly to go
to the park.”
“I struggle to make tea now that my arms are weak.”
Exercise: w
hat makes it difficult to respond in a helpful way to
your distress?
ACT exercises – What can we do about the barriers?

There are often challenges to doing what is good for us. The key
is to try to stay focused on what we want to do, even when these
barriers are in our way.
“I inevitably have ‘why me?’ days, but I try to stay positive

and get on with living life.”
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Taking the first barrier above, does your partner have so much
on their plate that they can’t talk to you about your secondary
progressive MS? If it’s important to you to have a close and
supportive relationship with your partner, and you value the
support you can give one another, then perhaps it is worth trying
to open up a little more, even if that is hard to do. You might start a
conversation like that by saying that you’re scared of overwhelming
them as it feels overwhelming to you at times, but you value the
support you can give each other and want to try talking a bit more.
On the other hand, if you can’t get that support from your partner,
are there friends or other family members who can be that source
of support?
If the barriers relate to mobility problems, then is it possible to do

things differently? Perhaps you used to go to the park, but if it
is fresh air that you like then is it possible to sit in the garden or
outside the front of your house instead? It’s not how it used to be
but you still get to do some of the things that are important to you
and that you enjoy.
If it is making tea that is difficult then is it possible for someone to

make you one in a warm travel mug so even if there is a time when
you are alone, there is still a warm cup available or can you get a
tipping jug to use to keep your independence.
Exercise: take a look at each of your barriers and think about

how you can do more of what’s helpful for you.
Positive thoughts on secondary progressive MS
For some people, the change to secondary progressive can

have positive aspects. For many, progression is very gradual and
only perceptible when looking back over a long period of time.
The reduction in, or absence of, relapses that might come on
unexpectedly can make planning life a little easier.
“I am relatively calm about my future as at least I don’t have
to worry about relapses.”
“Not having relapses means my MS has less of an

unpredictable impact on my working life.”
“As my symptoms are very gradual, it’s only through seeing

people I haven’t seen for a while that I realise my MS has
progressed. I just get on with the symptoms but generally
can’t tell what’s changed.”
Depending on the nature of symptoms, stopping disease modifying

drugs and the regular need to inject oneself can also be seen positively.
“The positive thing is that I don’t have to have that regular

injection together with its unpleasant side effects.”
For some, the diagnosis of secondary progressive allows them

to reflect on their lives. MS may alter the opportunities that may
be open to someone, but it can also help them focus on what is
important and valuable. Depending on circumstances this might
mean a change in career, taking up a new activity or encouraging
someone to live for the moment.
“I try to keep fit and concentrate on my body more by

strengthening muscles with Pilates and swimming. Both
giving me more confidence.”
“My life is based very much on what I can do, rather than
what I cannot.”
“There is a line from a Western which is corny but sums it up

well – ‘Play the cards life deals you.’ Nothing I can do about it
so I just get on with life.”
27 telephone 0800 032 3839

5 Managing secondary
. progressive MS
The services and support needed when MS becomes secondary
progressive may change and can involve a wider range of health
and social care services than someone saw when they had
relapsing remitting MS. Sometimes the links between these
services may seem less coordinated than previously. With less
regular contact with an MS team, people may feel less able to raise
concerns or ask about approaches to problems.
The management of secondary progressive MS focuses on the

following three key areas:
• symptom management – this may either be drug treatment,

rehabilitation, or a combination of the two
• prevention of complications
• promoting general health and wellbeing to attain the best quality

of life possible.
There are currently no disease modifying drugs licensed in the UK

that can alter the course of secondary progressive MS although
there are a number of trials that are showing promise.
The symptomatic treatments and rehabilitation strategies used in

secondary progressive MS are the same as for other forms of MS.
A multidisciplinary team of specialist health professionals may be
involved in your treatment, these might include:
• GP – can help management of some symptoms, GPs also have

a role in referring individuals to, and liaising with, other members
of the specialist team
• neurologist – makes the diagnosis of MS and determines what
medical treatment and rehabilitation may be appropriate
• consultant in rehabilitation medicine – works with therapists

and nurses to provide medical advice and coordinate
rehabilitation services for individuals with a combination of
symptoms and disabilities
• MS specialist nurse – often the first point of contact for

discussing any clinical issues, they also have a role in referring
to other members of the specialist team to ensure continuity of
care and liaising with the GP and primary care team – a group
of health professionals that are usually based in a GP surgery or
health centre, includes practice nurses and district nurses
• rehabilitation nurse – has a similar role to an MS specialist

nurse, but is affiliated with a consultant in rehabilitation medicine
rather than a neurologist
• physiotherapist – involved in the assessment of movement to

help improve mobility and may have a role in the management
of symptoms such as pain and spasticity. They can also provide
advice on exercise
• occupational therapist (OT) – involved in assessing a

person’s ability to perform daily activities. They have a role in
teaching fatigue management strategies and can provide aids or
adaptations if they are needed
• continence advisor – specialises in managing bladder and

bowel problems
• speech and language therapist (SLT) – involved in assessing

problems with speech and swallowing
• dietitian – assesses a person’s nutritional needs and provides

advice on managing diet, particularly if symptoms have resulted
in substantial weight loss or gain, or feeding has become difficult
29 telephone 0800 032 3839

• psychologist – involved in assessing psychological and
emotional problems.
NICE guidelines recommend that someone with MS sees a

specialist health professional in MS, such as a neurologist or
MS nurse, at least once a year to review their symptoms and
the care and treatments they are receiving.
Drug treatment
Studies are ongoing to determine whether any of the disease

modifying drugs that are used in other forms of MS are effective in
secondary progressive MS, with several showing promise. Currently
the majority of secondary progressive MS drug treatments are
aimed at alleviating the symptoms of MS as best as possible to
enable individuals to carry out normal day to day living.
It is impossible to mention all of the different drugs for all of the

different symptoms in this book, but listed below are some of the
drugs that are most widely prescribed. Some treatments are only
available in specialist centres and not all are licensed for use in
MS, but they may be prescribed off-licence at the discretion of the
doctor/neurologist in some circumstances. GPs can be reluctant
to prescribe some treatments unless they have been specifically
recommended by a neurologist.
• Spasticity and spasms: baclofen, gabapentin, tizanidine,

diazepam, clonazepam, dantrolene, carbamazepine,
intramuscular botulinum toxin, intrathecal baclofen, intrathecal
phenol, Sativex (limited availability on the NHS in the UK)
• Bladder problems: oxybutinin, tolterodine, desmopressin,

botulinum toxin
• Bowel problems: docusate, lactulose, macrogol,

bisocodyl, loperamide
• Sexual difficulties: sildenafil, vardenafil, tadalafil
• Fatigue: amantadine
• Pain and sensory symptoms: amitriptyline, pregabalin,

imipramine, nortriptyline, carbamazepine, gabapentin
• Depression: fluoxetine, citalopram, sertraline, amitriptyline,

imipramine, duloxetine, phenelzine sulphate
• Mobility: fampridine (limited availability on the NHS in the UK).
For some people tolerating the side effects of some of these

medications, which can include nausea, sleepiness, weakness, or
diarrhoea, can be a problem in itself.
There are some symptoms of secondary progressive MS for

which there are no specific drug treatments, but these symptoms
may benefit from therapy. For example, speech problems and
weakness can be treated through speech and language therapy
and physiotherapy. For some symptoms drugs may be of only
limited benefit – for example fatigue – so they may not be tried until
other avenues have been explored, such as a fatigue management
course. Sometimes a drug aimed at another symptom or condition
can be prescribed to give some symptom relief. For example,
anticonvulsant drugs (used in epilepsy) and antidepressants are
often used to treat nerve pain in MS as one of their effects is to alter
the chemical transmission of pain thereby reducing symptoms.
Steroids and secondary progressive MS
Steroids are sometimes used in relapsing remitting MS to speed up

recovery during a relapse. It is unclear how they work but they are
thought to act by suppressing the immune system and/or reducing
fluid accumulation around the sites of nerve damage. Sometimes
a one-off course may be given in secondary progressive MS if a
person begins to experience a period of deterioration, particularly if
their movement is predominantly affected.
31 telephone 0800 032 3839

In most cases it is generally accepted that steroids do not usually
have a role in secondary progressive MS so they are rarely used.
This is because in some cases they can in fact make things worse.
There have been some reports of a sudden deterioration after the
use of intravenous steroids in some cases of advanced progressive
MS. There is also no evidence that steroids can alter the long-term
course of secondary progressive MS.
Self-management
Adopting a self-management approach can be helpful. This

recognises the expertise that someone with MS has in how their
condition affects them and how this can be used in partnership with
health and care professionals. Rather than being a passive recipient
of care waiting to be told what will happen, self-management is a
proactive approach – raising concerns about symptoms, making
informed decisions about treatment or other issues that need
addressing and asking what services are available.
“Pick up on your symptoms early and ask early for help.”
“Don’t be scared to ask your doctor questions you may have,

they’re only human.”
MS nurses
In many situations, the first point of contact might be an MS nurse,

though it could be a supportive GP, a physiotherapist, occupational
therapist or another health professional who is willing to help find the
services that are needed. In some areas, people with a diagnosis
of MS can contact the MS nurse directly without need for a referral.
In others it may be necessary to ask a GP for a referral to the local
service. Initial contact will probably involve leaving a message on an
answerphone. The nurse will reply, but it may not be on the same day.
“It is reassuring to have specialist people within my area
available to call on when needed. I find it very difficult to ask
for any assistance/help but knowing I can use them when
needed reduces the stresses and anxieties of living with MS.”
People with progressive MS can sometimes feel that they have

dropped off the radar of MS services. There are a variety of reasons
why people may not have the same level of contact with their
neurologist or nurse:
• the symptoms of progressive MS tend to increase gradually rather

than appear or increase suddenly as happens with a relapse.
People may feel more reluctant to make contact about an ongoing
symptom than one that has suddenly flared up
• follow up meetings about disease modifying drugs may be

stopped and alternative appointments not put in place
• a
s there are no equivalent disease modifying drugs for
progressive MS, people may wrongly feel that nothing can be
done for this form of the condition and so don’t think to contact
a neurologist or nurse about treatment for individual symptoms.
“I could self-refer but was apprehensive about doing so at

first so needed to be approached by professionals.”
Support from specialist health services

Alison Smith, rehabilitation nurse
With symptoms changing gradually over time many people

continually adapt without realising it. These adaptations are
generally helpful but sometimes they aren’t the best way to cope
and may cause problems in the future (such as hip hitching causing
back pain). At this time it is useful to have regular check-ups, a
bit like a yearly MOT. This can be done by a neurologist or an MS
nurse but some people find a rehabilitation medicine consultant or
rehabilitation nurse suits the job better.
33 telephone 0800 032 3839

Other MS Trust resources
Map of MS nurses and other services –
www.mstrust.org.uk/map
Rehabilitation
The aim of rehabilitation medicine is to use all means available to
help an individual to live their life as fully as possible, minimising
the impact of physical, psychological or social complications.
Rehabilitation is something that should accompany medical
treatment, rather than being thought of as a last resort. Ideally
rehabilitation management should be an ongoing rather than an
episodic process, although there may be periods of intense therapy.
Unfortunately, it can be difficult to access rehabilitation therapies

on the NHS, particularly on an ongoing basis. In an ideal world
everyone would have regular access to physiotherapy, but in reality
a course of physiotherapy is typically for a fixed number of weeks
and you may be limited to the number of courses you can access
in a year. There can be an element of self-management in between
treatment episodes, in terms of maintaining the motivation to carry
on doing exercises suggested by a physiotherapist at home, or
finding other resources that may be available to you, for example a
local exercise class.
There is a huge range of possible therapy interventions. They are

generally grounded in a person’s desire to continue to live their life
in a certain way, or participate in a given activity, aiming for a clear
goal. Optimum use of medication can be enhanced by positive
lifestyle changes, psychological support if it is required and the
coordination of specific therapies to meet individual needs.
“[It is] eight to nine years since I felt my first symptoms, I am

still on my feet thanks to a regime of exercise and medication.”
Like other treatments for MS, rehabilitation is not curative, but it can
help an individual discover abilities they didn’t realise they still had.
It can help make the best of, and maintain, functions in order to
manage symptoms, promote independence and above all maintain
individual choice whatever the level of disability – therefore it is vital
to ask for help sooner rather than later. A wide variety of strategies
and therapies may be employed to help a person find new ways to
do things that have started to become difficult.
Some people with secondary progressive MS will have access to

a consultant in rehabilitation medicine and their team, whilst others
will access services through their GP, neurologist or MS specialist
nurse. Below are some of the rehabilitation therapies that may be
used to help manage MS symptoms.
Physiotherapy
his is probably the most widely recognised of the rehabilitation
therapies. A physiotherapist can carry out an assessment and design
individual stretching and exercise programmes to help with a variety
of symptoms such as mobility problems, spasticity and spasms,
weakness, tremor, balance problems and dizziness. They can also
teach relatives or carers to support a physiotherapy programme.
“I think physiotherapists are essential for people with

secondary progressive MS. It is good to be assessed on
a regular basis and have a clear programme of exercises
which can be rearranged to suit fluctuating needs.”
Occupational therapy
Occupational therapy aims to make day to day living more
manageable. It can involve finding ways to save energy and
minimise fatigue. Equipment may be provided to help with daily
activities, for example grab rails in the bathroom, perching stools
to enable sitting whilst preparing food, or specialist cutlery to
assist with eating. An occupational therapist will also be involved in
assessing for mobility equipment such as sticks, crutches, walkers
and wheelchairs if required. An occupational therapist may also be
able to assess an individual’s workplace and develop strategies to
help maintain, or facilitate a return to, employment.
35 telephone 0800 032 3839

Clinical psychology
A clinical psychologist approaches the psychological and
emotional problems associated with MS. This may include help
with cognitive symptoms, low mood or depression. A psychologist
may use approaches such as cognitive behavioural therapy (CBT)
or acceptance and commitment therapy (ACT) to help people
approach life with MS more positively.
Speech and language therapy

For those with difficulties with speaking, a speech and language
therapist can assess the problem and devise exercises to
strengthen and improve the muscles involved in speech and
breathing. They can also advise on aids for communication. If
swallowing difficulties are encountered, a speech and language
therapist can suggest ways to minimise or avoid problems.
Nutritional therapy
A dietitian may be involved if there are nutritional problems, for
example if a person has lost or gained a significant amount of
weight. Changes in weight may be due to mobility issues, loss of
appetite, or feeding or food preparation difficulties. They can also
give advice on different food textures and alternative methods of
feeding if swallowing becomes difficult.

Map of MS physiotherapists, OTs and rehabilitation services –
How the multidisciplinary team might work together towards
a clear goal is demonstrated by the following example:
An individual wants to go to their daughter’s wedding, but has

problems with spasms as well as bladder and bowel issues. The
neurologist or consultant in rehabilitation medicine might advise on
controlling the spasms, a community physiotherapist might help the
individual find better ways of getting in and out of a car, a specialist
nurse or continence advisor could work with them on timing and
management of their bladder and bowels, and one or more of the
rehabilitation team could be involved in helping the person and their
family develop more confidence.
Prevention of complications
Some of the symptoms of MS can make you more prone to
complications which can worsen pre-existing symptoms or trigger
new ones. The specialist knowledge of MS nurses, consultants in
rehabilitation medicine and district nurses is particularly important in
anticipating and preventing complications in progressive conditions.
Bladder infections can be particularly problematic in MS. For those

who use catheters it is important that a good, clean technique is
taught and followed to reduce the risk of infection.
In advanced secondary progressive MS, maintaining the integrity of

the skin is an important aspect of self-care. Otherwise what starts
as a minor skin irritation could result in a pressure sore. Keeping
the skin as clean as possible and well moisturised, and ensuring
individuals keep moving regularly by repositioning themselves if they
are in a wheelchair or in bed on a regular basis, will minimise the
risk of pressure sores forming.
It is important to remember that not all the symptoms you experience

are necessarily connected to your MS. If you experience anything
unusual you should still see the appropriate health professional.
37 telephone 0800 032 3839

Rehabilitation in secondary progressive MS
Alison Smith, rehabilitation nurse
A long time ago I met a lady with secondary progressive MS in a

Young Disabled unit. She wasn’t engaging in the rehab process as
it was then being practised. New to the territory, I asked her why
she didn’t want to participate in ‘washing and dressing’ practice.
She told me she had fatigue and if she did her own personal care
she was good for little else for many hours. She said that anyone
could dress her but only she could read a book, go to the theatre
or spend time with friends and family. So she ensured that all of her
energy was spent doing things that were important to her and her
loved ones.
I have never forgotten that conversation. Long before it was

integrated into routine practice, she encompassed the goal-directed
principles of rehabilitation that we use now.
Rehabilitation is not just therapy, although therapy is part

of rehabilitation.
In relapsing remitting MS, medication and therapy are the drivers of

treatment. In secondary progressive MS, if a rehabilitation approach
is taken, the individual can become the driver of the treatment.
Fully informed in symptom management (medication, therapy and
adaptive techniques/equipment) and supported by a rehabilitation
practitioner, a goal-based, lifestyle-centred approach can be taken.
People new to rehabilitation often ask me what they can do to

manage their MS if they aren’t receiving a disease modifying drug
and they just appear to be getting worse. I suggest the above
approach because biological, psychological and sociological
wellbeing is a successful route to managing the impact MS has on
a person’s life and life choices.
6 Research into secondary
. progressive MS
Collaboration in research
Historically, progressive MS has been studied less than relapsing

remitting MS. However, the situation has slowly begun to improve
in the last decade. In 2012, the Progressive MS Alliance was
formed (previously known as the International Progressive MS
Collaborative). This is a global research initiative, involving the
collaboration of organisations from around the world, who are
working together to find answers that will lead to new treatments
and ultimately, end progressive MS.
“Focusing on primary and secondary MS is probably the

greatest need in the MS community.”
Prof Alan Thompson
“It is simply a matter of time before breakthroughs in

progressive MS occur. If we keep investing in research the
breakthroughs will happen.”
Prof Gavin Giovannoni
In 2013, over 170 MS researchers, clinicians and industrial partners

gathered to discuss challenges and strategies to accelerate
innovative research focused on progressive MS. Five key areas of
research were identified:
• developing better experimental models for progressive MS
• identifying outcome measures to be used in trials that are better

able to show the effects treatments are having on progression
• identifying new, or existing drugs currently used for other

conditions, that could be effective therapies for progressive MS
39 telephone 0800 032 3839

• clinical trial strategies that give an early indication whether an
intervention will be effective (known as proof-of-concept)
• symptom management and rehabilitation.
Following a further meeting in 2013, the Alliance announced two

funding initiatives and put out a request for research proposals. 20
projects were selected and funded in early 2014 with a further three
projects selected and funded in 2016.
More information on the Progressive MS Alliance can be found

at www.progressivemsalliance.org
Future research priorities
Why disease modifying drugs for relapsing remitting MS are less

effective in secondary progressive MS
The change from relapsing remitting to secondary progressive MS
reflects a change in the underlying disease activity in the central
nervous system.
Relapses in multiple sclerosis are associated with patches of

inflammation around nerves in the brain and spine. Several ways
have been found to reduce or prevent some of this inflammation,
which has led to the development of the disease modifying drugs.
When MS becomes progressive, inflammation becomes less

prominent and the main disease activity is the destruction of the
myelin layer that surrounds nerves and of nerve fibres themselves.
What causes this process and how it can be altered is less well
understood. Drugs that reduce inflammation are no longer as
helpful and new approaches are needed.
As well as trying to better understand why progression happens,

research is looking for ways to reduce the rate of progression by
protecting the nerves (neuroprotection) or by finding ways to repair
damage that has occurred (stem cells may have a role in this).
Neuroprotection
Damage caused by MS can lead to increases in levels of nitric

oxide, calcium and sodium around nerves. Contact with high levels
of these chemicals can damage or destroy nerve cells, leading to
the persistent symptoms of progressive multiple sclerosis.
Similarly, glutamate is one of the chemicals involved in transmitting

messages from nerve cell to nerve cell. However, excessive
glutamate can also damage nerves.
The loss of nerve cells can be measured through changes in brain

volume, which is known as atrophy. As cells are lost, the brain
becomes smaller.
The theory of neuroprotection is that, if the nerve cells can be

protected from these chemicals, destruction – and thus further
permanent problems – can be lessened or perhaps prevented.
Several studies have looked at possible neuroprotective drugs,

though there have only been small studies in humans. Drugs that
have shown potential will need to be studied in larger trials before
treatments can be made available for people with MS.
Neuroprotective treatments will not be able to reverse progression

or restore function that has already been lost. However, if suitable
drugs can be developed, it is hoped that this will mean that further
progression of MS can be significantly slowed down.
Repairing and replacing myelin
Whilst drugs that alter the action of the immune system or that
protect nerves may help to limit the build-up of damage, neither will
reverse the progressive effects of multiple sclerosis. Finding ways to
repair or replace areas of damage, and thus allow people to recover
ability that has been lost, is another important area of MS research.
41 telephone 0800 032 3839

Stem cells
Stem cells are cells that can develop, or differentiate, into any of the
cells of the body. Stem cells are the first cells to grow in the embryo
and allow it to develop the specialised functions and mechanisms that
occur in the human body. Stem cells also occur in adults and are used
by the body to replace areas of damage.
Stem cells may potentially be used to treat MS in different ways by:
• developing into nerve cells to repair damage in the brain or spine
•
developing into oligodendrocytes, the cells that create and
repair the myelin around nerves
•
boosting the immune system to prevent further damage
occurring.
Work is also looking at how best to deliver stem cells so that they
go to the appropriate places to carry out repair and at ways to
ensure that transplanted stem cells do not harm the recipient or
grow into unwanted tissue.
If processes can be developed, it opens the possibility that cells

destroyed by MS might be replaced and disabilities caused by the
loss of nerve pathways reversed.
Stem cell treatment has been demonstrated for experimental forms

of MS. Pilot studies in humans – so far looking principally at safety
– have started in the UK and have shown some success in early,
very active forms of MS and is now available for a small number of
people on the NHS.
Accelerating the growth of myelin

It is known that in the earlier stages of MS the body can to some
degree replace lost myelin. If the affected area is no longer being
attacked by the immune system, new myelin can be formed around
nerve cells.
Research has looked at the body’s own ability to replace damaged
myelin and has identified proteins that may enhance this. Work to
develop treatments that might encourage and enhance this process
is still in very early stages and an approach that can be studied in
humans is still some years away.
Trials of disease modifying drugs
Trials of licensed disease modifying drugs in secondary

progressive MS
There have been trials where several of the disease modifying drugs
used in relapsing remitting MS are given to people with secondary
progressive MS. These drugs include interferon beta 1a, interferon
beta 1b, glatiramer acetate, mitoxantrone and riluzole. The majority
of these drugs are designed to inhibit the inflammation that is
thought to cause damage to the myelin of the nerves. Because
inflammation becomes less of a feature in secondary progressive
MS, these drugs are of less relevance and have generally been
shown not to be effective. The trials have been justified because
although there is less inflammation seen than in the relapsing
remitting form of MS, there is still some inflammation present in
Trials of potential disease modifying drugs and therapies in

secondary progressive MS
Some of the drugs that have been studied for their effect on
protecting nerves from further damage (neuroprotection) are:
• Lamotrigine (Lamictal) – studied in 124 people with secondary

progressive MS but found to be no more effective than placebo.
• Safinamide – showed a neuroprotective effect in animal studies.
• Flecainide (Tambocor) – showed a neuroprotective effect in

animal studies.
• Eliprodil – produced some degree of nerve fibre protection in

laboratory based models.
43 telephone 0800 032 3839

• Cannabis – the CUPID study involved 493 people with
progressive MS taking a cannabis based pill. Results found it to
be no more effective than placebo.
• Phenytoin (Epanutin) – the neuroprotective effect of this

antiepileptic drug was explored in a study involving 90 people
that was completed in 2014. It showed a protective effect
towards the optic nerve in cases of acute optic neuritis.
A number of small studies have looked at the neuroprotective

properties of adrenocorticotropic hormone, erythropoietin, Lithium,
MIIS416, sunphenon, statins, lipoic acid, amiloride, fluoxetine,
riluzole, domperidone and siponimod, each of which have shown
potential for slowing progression. They are therefore being taken
forward in larger trials in secondary progressive MS.
• Simvastatin is a drug used to lower cholesterol. The MS-STAT

trial involved 70 people with secondary progressive MS taking
a high dose of this drug and 70 taking a placebo. Those on
simvastatin showed reduced loss of brain volume, slowed
change in EDSS, and improved scores on the MSIS-29, a
measure of the extent to which MS affects daily life. A larger trial,
named MS-STAT2, is starting in 2017.
• Siponimod is a similar drug to fingolimod and is being explored

as a treatment for secondary progressive MS. A study in more
than 1,000 people showed that it could delay progression by at
least three months, therefore an ongoing trial is assessing the
extent of this effect. The trial is due to complete in 2023.
• MS-SMART is a trial looking at three drugs – fluoxetine, riluzole

and amiloride – that have shown some signs of promise in
progressive MS. This involves 440 people with secondary
progressive MS and is due to complete in 2018.
• Biotin is a water soluble vitamin (B7) that activates enzymes
involved in cellular energy production and myelin formation.
A small study found that high doses of biotin in patients with
primary and secondary progressive MS had an impact on
disease progression in those with optic neuropathy, visual field
loss, and spinal cord involvement. Early results of a larger trial of
high dose biotin in progressive MS have shown improvement in
MS-related disability outcomes with the full results expected in
September 2019.
• Lipoic acid is a naturally occurring antioxidant has been shown

to reduce brain atrophy in a small study with 69 people. A larger
trial is starting in 2017.
• Masitinib is a drug that targets mast cells, which are involved in

allergy and inflammation, reducing the immune response and
inflammation. In a small study of the drug in primary progressive
MS, participants showed an improvement on the Multiple
Sclerosis Functional Composite score (MSFC). The MSFC
assesses walking ability, hand and arm coordination, and mental
function. Although improvements were seen, they were not
statistically significant, and a larger study is now under way to
see if the results can be replicated. The study is expected to fully
complete in July 2019.

New research in MS means that things can change quickly.
For the most up-to-date information visit our website where we
post regular updates on the latest research papers in MS.
www.mstrust.org.uk/research
45 telephone 0800 032 3839

7 Tips for coping with secondary
. progressive MS
Here are some ideas and tips submitted by people living with
“Keeping a sense of humour is very important. Don’t forget

how to laugh!”
“A good support network of health professionals, friends,

family and charity groups helps.”
“Keep a card to hand with the name and contact details

of your MS nurse, your neurologist, support groups, MS
charities, etc.”
“If face-to-face meetings are confusing, having what you

want to say written down helps.”
“Ask for copies of the letters sent to your GP, either from the
surgery or the hospital, so you know what they are saying
about you.”
“If you think something might help you then ask for it – loudly!”
“Take part in research studies – these in themselves can be

therapeutic and may give you a boost of wellbeing because
you are helping others.”
“Get to know all you can about your illness – information

is power.”
“There is a lot of information to be had. I just try to take in a

little bit at a time.”
“Talking to others with MS and going to online chatrooms
has helped enormously.”
“Ask people for help, eg, carrying things, asking for lifts etc.
Most people are pleased to do so.”
“People often don’t realise your difficulty as you might look

‘normal’ even if you cannot walk very far or are afraid of
falling over.”
“Raise the profile of secondary progressive MS.”
“Keep doing things – I never thought I could horse-ride or

splash about in a hydrotherapy pool and I might even learn to
swim again.”
“Take up a new hobby that you can do sitting down – art

classes, playing an instrument etc.”
“Keep up with friends and say ‘yes’ to invitations even if you

think you can’t possibly manage – you usually can with a bit
of help.”
“Keep an open mind – be prepared to talk openly and frankly

about how you are feeling.”
“Be honest because you are the best person to describe your
feelings. You will have down days when symptoms may make
you depressed. Share your feelings and treat it as another
dropped stitch in life’s rich tapestry.”
“A positive mental attitude is essential to survival and coping

with everyday living with MS.”
“Try not to let MS take over your life completely.”
“Never give up hope, think about what you can do to manage

and not let MS manage you.”
47 telephone 0800 032 3839

8 Living with secondary
. progressive MS
Living well – health awareness, activity, diet
The physical and psychological effects of living with MS can
sometimes mean that looking after your basic health is overlooked
or becomes more challenging to achieve. Fatigue, reduced mobility
or continence problems can make someone become less active
or follow a diet based more on convenience of preparation than
nutritional value.
It is important for individuals to make the most of both their physical

and emotional wellbeing to enable them to live life to the fullest and
do the things they enjoy as well as the things they have to do.
Trying to stay as healthy as possible can put people in the best

position to deal with the challenges presented by their MS.
Health awareness
It is very easy for both the person with MS and their health
professionals to assume that all health issues are in some way related
to multiple sclerosis. This is, of course, not the case. People with MS
are at risk from the same health problems as the general population
and it is important to have any relevant health, dental or optical checks
and to raise concerns with your GP.
Sometimes the effects of MS can make getting to check-ups more

difficult, though this should not be used as a reason why they don’t
take place. Sometimes adaptations to the equipment may be needed
– for instance, for a wheelchair user attending breast screening, or
someone with swallowing difficulties receiving dental work. When the
check-ups are being booked, make sure that people are aware of
potential barriers and requirements.
Healthy lifestyle
General healthy lifestyle advice also applies to people with MS and
may have added advantages for people with the condition.

Living well with MS – www.mstrust.org.uk/living-well-ms
Staying active
Exercise has been shown to have a range of benefits for people with
MS. As well as improving general fitness, exercise can help to reduce
fatigue and improve strength, mobility, bowel and bladder function. It
can also help improve mood and sense of wellbeing.
The idea of ‘exercise’ can be off putting for some, but any activity that
involves physical movement with even a slight increase in effort – such
as gardening, housework or shopping – can be beneficial.
“I find it much easier to disguise it as something fun that

happens to keep me active rather than just ‘doing exercise’.’’
Symptoms such as stiffness, weakness and poor balance can

benefit from exercise and a physiotherapist can help develop a
suitable, tailored programme.
If fatigue or sensitivity to heat are issues, take things gently and be

aware of when to rest and when to pace activities. Otherwise, there
are no hard and fast rules about what exercises someone should
do. Find something you enjoy doing, whether on your own or in a
group, and build up gradually.
Healthy eating
Although no specific approach is scientifically proven to be
beneficial for people with MS, having a healthy diet has been shown
to help, especially with managing symptoms.
49 telephone 0800 032 3839

A diet low in saturated fat with plenty of fruit and vegetables is
proven to be good for general health so do some experimenting to
see what agrees with you and what helps to make you feel better.
A healthy, well-balanced diet and plenty of fluids provides optimum

energy levels, helps to control weight and reduces the risk of
cardiovascular disease.
Smoking
The health risks associated with smoking are well known, but
research has shown that giving up can have particular benefits
for people with MS. People who gave up cigarettes following their
diagnosis with MS experienced slower progression of disability than
people who continued to smoke.
Complementary medicine
Research studies suggest that up to half of people with MS
regularly use at least one complementary therapy approach to
help with their condition. As well as any direct therapeutic benefits,
exploring different approaches can also offer a feeling of regaining
some sense of control, even if particular therapies that are tried
prove not to be helpful.
There is a wide range of therapies that people might consider

from acupuncture and aromatherapy to mindfulness and yoga. If
a particular therapy sounds interesting, where possible, consult a
practitioner who has been recommended by a trustworthy source –
a friend, doctor, etc. So long as there are no safety issues and the
cost is reasonable, be your own judge as to whether the approach
is helping. If you feel benefit, then keep on going. If the approach
does nothing for you, mark it down to experience and perhaps try
something else.
Mindfulness for health
Mindfulness is an increasingly popular and effective way to help
people relate to their thoughts and emotions in a different way.
Mindfulness teaches us to make peace with our thoughts and
emotions rather than to try to change them or ignore them.
Research findings show that mindfulness courses reduce
stress, depression and anxiety and increase heath-related
quality of life in people with a range of medical conditions
including MS.
www.mstrust.org.uk/a-z/mindfulness
Work
For many people, working provides more than just a regular pay
packet. Being at work can give structure to the week, be a source
of social interaction and be bound up with someone’s feelings of
wellbeing and self-worth. Work can be good for health.
People with MS are covered by the Equality Act, which protects anyone
with multiple sclerosis from discrimination in the workplace and requires
employers to explore reasonable adjustments that could be made to
help someone stay in work. Despite this, research shows that many
people with MS find that their condition has an impact on their working
life and leave employment early.
Before making any decision, it is worth exploring the implications –

financial, social and the effect on your family – and what support might
be available to help you with these choices.
Welfare benefits
For many, the change to secondary progressive MS is a point when

they might start to look for information on what help is available or
find that their eligibility for benefits has changed.
51 telephone 0800 032 3839

Benefits fall into three categories:
• Those related to low income – such as Housing Benefit, Council

Tax Benefit or Income Support. Some of these benefits will
be combined in the new Universal Credit which is currently
being introduced.
• Those related to employment – such as Jobseeker’s Allowance

or Employment and Support Allowance (ESA). Some of these
benefits will also become part of the Universal Credit.
• Those related to the extra costs of living with a long-term

condition – such as Personal Independence Payments (PIP),
which have replaced Disability Living Allowance (DLA) for new
claimants. People under 65 on 8 April 2013 have been moved
to PIP.
Navigating the benefit system can be challenging and the chances

of making successful claims are improved by talking to organisations
with expertise in guiding people through the process.
Citizens Advice offers free advice, though this may need to be

at one of the larger centres rather than community offices. Their
Advice Guide website includes a section on identifying and claiming
benefits – www.adviceguide.org.uk
Some MS Society branches have a welfare officer or local

support officer who can help people with MS claim the benefits to
which they are entitled – www.mssociety.org.uk/near-me
Gov.uk, the government information website, has links to benefits

calculators to help you find out which benefits you may be entitled
to – www.gov.uk/browse/disabilities
In some areas there are local groups that can help people find their
way through the benefit system.
Maintaining social relationships
Contact with other people is an important aspect of life. Aside from

any direct support and help that people can offer, the sense of
involvement and understanding, and a wider perspective on your
own situation is central to wellbeing.
Sometimes the effects of MS make you feel less inclined to be

sociable. Meeting people can be tiring or venues present practical
problems, such as difficulty with access or knowing where to find
toilets quickly.
“Can’t go out much, can’t be far from a toilet or from home

generally, where everything is arranged to suit.”
“If I go out during the day it can’t be for longer than an hour
or two, I just become too weary and uncomfortable.”
Sometimes people feel embarrassed by their own restrictions and will

perhaps judge themselves more harshly than those around them.
“I hate the way MS affects me and I prefer others not to see

its worsening effect.”
“I don’t like being seen in a wheelchair.”
Getting out of the habit of being sociable can also make going out
become more of a chore.
“I have to force myself into action sometimes as it is so

much easier to just stay at home.”
It’s important to remember that there is a poor understanding of MS

amongst the general population. If people do know about MS, they
may have incomplete knowledge or make false assumptions. Friends
may be unaware of just how MS affects someone and not realise
what an individual with MS can or can’t do.
53 telephone 0800 032 3839

As a person with MS, you play a key role in letting people know what
the barriers and challenges are for you and how best to overcome
them. Depending on symptoms, this could involve giving plenty of
notice of get-togethers, being prepared for you to decline or pull out
at the last minute, planning for easy access to toilets or choosing
shorter routes for walks.
“If I go to a restaurant I usually go to one particular one

which is familiar and where they now know me and
my family.”
People are often willing to help in any way they can but need
guidance on what is appropriate. Through not knowing what
questions are appropriate, some people may avoid talking about
MS entirely. Others may give full reign to their curiosity or become
overpoweringly protective. It can be useful to develop strategies to
deal with unwanted or intrusive questions.
“I don’t like going into situations with new people as they ask
too many questions and some are very insensitive.”
Being sociable isn’t restricted to meeting people face to face. There

are an increasing number of online groups on any topic imaginable
and these may be an option for someone who has difficulties with
mobility or who is reluctant to be seen as a person with a disability.
Online, people are defined just by what they tell people.
“I get out less now but use the internet and the telephone to
keep in touch with friends.”
Reflections on living with secondary progressive MS
It’s good to have something to aim for and then congratulate

yourself on your achievements, big and small. You shouldn’t worry
too much if you don’t manage to do everything exactly as you
planned. It’s your life so be true to yourself and make the most of it.
9. More information
MS Trust Information Service
If you have specific questions on any aspect of MS, contact our

Enquiry Service on 0800 032 3839 or infoteam@mstrust.org.uk
MS Trust publications are free and can be ordered by calling

01462 476700 or by emailing info@mstrust.org.uk. All titles can
be read or ordered online at www.mstrust.org.uk/pubs
Keep up to date with news about research and the world of MS by

signing up for Open Door, the MS Trust’s free, quarterly newsletter,
or our weekly email alerts. Call us on 01462 476700, email info@
mstrust.org.uk or sign up online at www.mstrust.org.uk/in-touch
Other MS Trust publications you may find helpful

Books
• Are you sitting comfortably? A self-help guide to good
posture in sitting
• Falls: managing the ups and downs of MS
• Living with fatigue
• Managing your bladder: a guide for people with MS
• Managing your bowels: a guide for people with MS
• MS and me: a self-management guide to living with MS
Exercise resources
• Move it for MS: a DVD of exercises for people living with MS
• Exercises for people with MS: an online resource. The exercises
are arranged in categories based both on how they are done and
the problems they address www.mstrust.org.uk/a-z/exercise
55 telephone 0800 032 3839

Websites
• MS Trust website: a reliable source of information about
symptoms, treatments and more
www.mstrust.org.uk
• MS services: a map of local services and MS specialist centres
• StayingSmart: a website designed for people who want to
understand how MS can affect thinking, memory and concentration
www.stayingsmart.org.uk
Online support groups

MS People UK
An online community for those with MS, their families and friends
www.ms-people.com
Jooly’s Joint
An online community of people who live with MS
www.mswebpals.org
Benefits and legal advice
Disability Law Service

Offers free specialist legal advice for people living with a disability
http://dls.org.uk
Access to work Scheme

Information about grants for assistance in travelling to work and
workplace adaptations.
www.gov.uk/access-to-work
Disability Living Allowance helpline

Advice on Disability Living Allowance (DLA)
Tel: 0345 605 6055
Attendance Allowance helpline

Advice on Attendance Allowance (AA)
Tel: 0345 605 6055
Personal Independence Payment helpline
Advice on Personal Independence Payment (PIP)
Tel: 0845 850 3322
Department of Work and Pensions

The government department that oversees the benefits system, the
website has information on the range of benefits available
www.gov.uk/dwp
Citizens Advice Bureau

Offers free, confidential, impartial and independent advice, including
benefits, legal matters and employment rights
www.citizensadvice.org.uk
Equality and Human Rights Commission

The Equality and Human Rights Commission is a good source of
advice if you feel you may have been discriminated against at work
or elsewhere
www.equalityhumanrights.com
Getting around
Blue Badge Scheme

Information on the Blue Badge Scheme, including eligibility, where it
can be used and how to apply for a Blue Badge
www.gov.uk/blue-badge-scheme-information-council
Shopmobility
A federation of more than 250 schemes providing scooters and
wheelchairs for shoppers with mobility problems
www.shopmobilityuk.org
Motability
A national UK charity that helps disabled people and their families
become more mobile
www.motability.co.uk
57 telephone 0800 032 3839

Driving Mobility
A network of independent organisations who offer information,
advice and assessment to individuals with a medical condition that
may affect their ability to drive
www.drivingmobility.org.uk
Equipment and adaptations
Disabled Living Foundation

Provides information on disability equipment, day to day household
gadgets, new technologies and training techniques
www.dlf.org.uk
Remap
Federation of volunteer organisations that provide custom made
aids for people with disabilities
www.remap.org.uk
AbilityNet
Offers advice, support, assessment of needs and the supply of
adapted computer equipment for people with any sort of disability
www.abilitynet.org.uk
Foundations
Has information on local Home Improvement Agencies, which can
offer help with finding funding and managing home improvements
www.foundations.uk.com
Relationship support
Relate
Offers advice, relationship counselling, sex therapy, workshops,
mediation, consultations and support face-to-face, by phone and
through the website
www.relate.org.uk
British Association for Sexual and Relationship Therapy
Professional body for sexual and relationship therapists. Can
provide a list of accredited therapists in your area
www.basrt.org.uk
Health and social care information and

carer support
Arranging health and social care

Includes information on accessing health and social care
assessments, direct payments, professional carers and help
with health costs
www.nhs.uk/CarersDirect
Carers Direct helpline

Provides information to support carers
Tel: 0300 123 1053
Carers Trust
Provides information, advice and services for people caring at
home for a family member or friend
www.carers.org
Carers UK
Provides information and advice to carers
www.carersuk.org
Holidays
Open Britain
A guide to accessible accommodation in the UK
www.openbritain.net
59 telephone 0800 032 3839

Tourism for All
Provides information on accessible accommodation of different
types in the UK and abroad, includes a directory to search
accessible accommodation, attractions, respite care and services
www.tourismforall.org.uk
Disability Holidays Guide

Provides information and a holiday search facility for people
with a disability
www.disabilityholidaysguide.com
Notes
61 telephone 0800 032 3839

Notes
About the author
Simon Webster, Information Officer, MS Trust
Thomas Allard, Content and Engagement Manager, MS Trust
The MS Trust is a UK charity for people with MS, their family and
friends. The MS Trust Information Service offers a personalised enquiry
service; produces a wide range of publications including Open Door, a
quarterly newsletter; and provides web based information.
Thank you to
All the people with MS and the health professionals who have made
this book possible through sharing their experiences of secondary
progressive MS and by commenting on draft versions of the work
in progress.
Please contact the MS Trust information team if you would like

any further information about the reference sources used in the
production of this publication.
This edition published 2017.

This publication will be reviewed in three years.
Bibliographical information
Thomas Allard
Secondary progressive multiple sclerosis
ISBN 1-904156-312
© 2017 Multiple Sclerosis Trust
All rights reserved. No part of this book may be reproduced, stored in a retrieval system or transmitted in
any form by any means, electronic, electrostatic, magnetic tape, mechanical, photocopying, recording or
otherwise without the written permission of the publisher.
63 telephone 0800 032 3839

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Multiple Sclerosis Trust

Spirella Building, Bridge Road
Produced by verdicottsdesign.com
Letchworth Garden City

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Secondary progressive

MS Trust information service

The MS Trust offers a wide range of publications, including Open

This book is written as an introduction to secondary progressive

Sometimes thought of as a neglected area of MS, interest in finding

The text is illustrated with the comments and experiences of health

If you have specific questions on any aspect of MS, contact

3 telephone 0800 032 3839

1. What is secondary progressive MS? 6

2. Diagnosing secondary progressive MS 12

3. The transition to secondary progressive MS 17

4. Coming to terms with the transition to

5. Managing secondary progressive MS 28

6. Research into secondary progressive MS 39

8. Living with secondary progressive MS 48

5 telephone 0800 032 3839

MS is a complex and unpredictable condition that varies widely from

Originally MS was classified into two main clinical subtypes:

• r elapsing remitting MS – characterised by periods when

However, over the years clinical evidence pointed to there being

Multiple Sclerosis type descriptions

Health professionals may Type of MS these

7 telephone 0800 032 3839

RRMS Transition from SPMS

Stable Stable Not active

Secondary progressive MS (SPMS):

“Initial relapsing remitting disease course followed by

People with relapsing remitting MS often go on to develop a

This can be explained because there are two underlying processes

• inflammation around nerves, which is associated with the

• destruction of nerve fibres, which is associated with progression.

Current thinking is that both processes occur early in the condition,

The attack on myelin causes inflammation around the nerves,

This pattern of damage and repair is reflected in the relapsing

Over time, the ability to repair damaged myelin is lost, leaving

9 telephone 0800 032 3839

inﬂammation inﬂammation exposed axon exposed axon

11 telephone 0800 032 3839

There is no test to show that someone’s MS is now secondary

Things that can make the change hard to spot

While the relapsing and progressive patterns overlap, people

People may also experience ‘pseudo relapses’ a temporary

Having taken account of these factors, the neurologist will be looking

Not progressive Progressive

Although the level of disability might be higher after a relapse

13 telephone 0800 032 3839

Although none of the symptoms of MS are unique to the different

People with secondary progressive MS are also more likely to show

Defining secondary progressive MS is certainly not an exact science

In addition, there is often a reluctance to talk about progression,

Once the point has been reached of formally defining secondary

In secondary progressive MS the chance of relapse is lower. It might

15 telephone 0800 032 3839

Despite awareness of change, it may still come as a shock to be told

However, so much can be done at this point to help people stay

People may benefit from a review of their medications, mobility, every

Most people want good, safe information on their condition and

“I had already suspected that my MS was now

“I told my MS nurse that I thought it had changed, she

The effect of words

It is not unusual for people to think that progressive MS will be

“Progressive sounds worse, even though it’s only a word for

“People get hung up about the label of secondary

4. Coming to terms with the transition to

5. Managing secondary progressive MS 28

6. Research into secondary progressive MS 39

8. Living with secondary progressive MS 48

• r elapsing remitting MS – characterised by periods when

While the relapsing and progressive patterns overlap, people

Exercise: take a look at each of your barriers and think about