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Disease modifying

therapies (DMTs)
for MS
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everything in between. We understand
what life’s like with MS.
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2 Disease modifying therapies (DMTs) for MS


Contents
A word from Tom, who has MS 4
Five things to know 5
About this booklet 7
What is MS? 8
What are DMTs? 10
What could a DMT do for me? 14
Making my decision about DMTs 18
A quick guide to each drug: 26
• alemtuzumab (Lemtrada) 29
• beta interferons (Avonex,
Betaferon, Extavia, Plegridy, Rebif) 32
• daclizumab (Zinbryta) 35
• dimethyl fumarate (Tecfidera) 37
• fingolimod (Gilenya) 39
• glatiramer acetate (Copaxone) 42
• natalizumab (Tysabri) 43
• ocrelizumab (Ocrevus) 46
• teriflunomide (Aubagio) 49
Questions to ask my MS specialist 51
New words explained 52
Further information 54
A word from Tom, who has MS
I was diagnosed with multiple to reduce the number of relapses
sclerosis (MS) in 2008 and within you have and slow down your MS.
a year started a disease modifying
therapy, or ‘DMT’. It reduced the My advice is: don’t keep things to
number of relapses I was having. yourself. Talk to your loved ones
In 2015 I changed my drug and about treatment. Ask your MS
I haven’t had a relapse in 17 nurse, if you have one. And don’t
months. It’s definitely made my be afraid to tell your MS specialist
day-to-day life with MS better. what’s on your mind and why.

For anybody looking at DMTs, So do give the proper amount


especially for the first time, it of thought to it. With the right
might seem scary. Yes, there support, you’ll be more likely to
are good stories about DMTs, pick the drug that’s right for you.
but they’re hard to find on the That way you too might soon be
internet. People often don’t post telling others that ‘I’m doing OK’.
online how they’re doing OK
and that the drugs are working.
This booklet is to help you better
understand the different drugs
available. It lets you know what
your options are.

Your decision about taking a DMT


is important because it affects the
most important person in your life
- you. But don’t be overwhelmed
by it. If you decide to take a
particular drug hopefully it’s going

4 Disease modifying therapies (DMTs) for MS


Five things to know

1 You usually can’t see the damage MS is causing. And it can


be happening even if you’re not having a relapse

2 The sooner you start treatment, the more difference it could


make to your MS

3 A DMT can cut down the number of relapses you get and
slow down how fast your disability gets worse

4 Drugs that hit MS the hardest can also have the most
serious side effects

5
DMTs help if you get relapses. But we hope the first drug
that also works against non-relapsing, progressive MS will
be available in 2017 or 2018

Disease modifying therapies (DMTs) for MS 5


About this booklet
If you’ve recently found out types of multiple sclerosis (MS).
you have MS your specialist One has relapses, periods when
should talk to you about your symptoms get worse, or
new ones start, and then often
treatment within six weeks of
get better. With the other type,
your diagnosis. But if you’ve progressive MS, you instead get a
had MS a long time without steady worsening of your MS with
being on treatment, it’s not no relapses.
too late to ask about starting.
Only one drug in this booklet
This booklet goes over what
works against progressive
your options are. MS. We hope this new drug
The booklet begins with a quick (ocrelizumab) is coming soon and
look at what MS is. This helps you will be the first that could work
understand how MS drugs work, for you if your MS is progressive.
and why it’s best to take them Go to www.mssociety.org.uk/
earlier instead of later. ocrelizumab to keep updated
on its progress.
Next it looks at making your
One last thing. Where you see
decision about taking one of
a word in bold in this booklet, it
these drugs. You’ll find out who
means you can turn to the back
can have each drug, how you take
and find it explained.
it, and what its benefits and side
effects are.

All the drugs in this booklet are You can get more detailed
used if your multiple sclerosis information on each drug in
has relapses. There are two our DMT factsheets at
www.mssociety.org.uk/dmts

Disease modifying therapies (DMTs) for MS 7


What is MS?
If you know how MS affects why MS affects everyone in
your body it can help you different ways.
understand why taking a What’s a relapse?
disease modifying therapy Over time the damage MS does to
(DMT) can make a difference. the nerves in your brain and spinal
Your body’s immune system cord builds up. A relapse is one
fights off viruses and bacteria sign of this. Relapses are flare ups
that get into your body and cause or attacks of your MS symptoms.
infections. But in MS this system During a relapse you get new MS
attacks the nerves in your brain symptoms or old ones get worse.
and spinal cord by mistake. It Afterwards they can go away,
attacks the covering of these or you may be left with some
nerves, called myelin. This causes symptoms or disability. Around
inflammation and damage. eight in ten people are diagnosed
with a relapsing type of MS.
Damage to this myelin covering
means it’s harder for signals to The time between relapses is
travel from your brain and along called ‘remission’. We used to
these nerves. Over time this think that during remission MS
affects the control you have over didn’t cause any problems. But
many parts of your body. This from looking at MRI scans of
causes your MS symptoms. people’s brains we now know that
MS can be causing inflammation
Together your brain and spinal and damage when you’re in
cord make up your central remission. So, if you’re not having
nervous system. The symptoms relapses it doesn’t mean your MS
you get depend on what part of has stopped being active.
this your MS is affecting. That’s

8 Disease modifying therapies (DMTs) for MS


“I’d love people who’ve But much of the damage MS
just been diagnosed causes won’t give you symptoms.
with MS to know it’s You won’t know it’s happening. An
not all doom and MRI scan of your brain (or spinal
gloom. It’s not as scary cord) will show where the damage
as you think. There is taking place. These are called
are plenty of treatments ‘lesions’ or ‘plaques’.
and options to try,
Early on in your MS your body can
with new things being
repair a lot of this damage. But as
trialled.”
time goes on, it stops being able
Lorraine
to do this. This leads to a build-up
of your symptoms and disability.
The most obvious signs of how MS The good news is that for many
is affecting your brain and body people DMTs can slow this down.
are relapses, your MS symptoms
Find out more about MS at
or any disability you have.
www.mssociety.org.uk/what-is-ms
What are DMTs?
Disease modifying therapies In this booklet you’ll mostly see
(DMTs) are also called ‘disease the generic names, with the brand
modifying drugs’ (DMDs). They name sometimes in brackets.
aren’t a cure, but they could make
a big difference to your MS. DMTs DMTs can be put into three
offer many people with MS the groups, according to how well
chance to take more control of it they work:
and their lives.
High (they can work very well):
Nearly all the DMTs we have at • alemtuzumab (Lemtrada)
the moment only work with types • natalizumab (Tysabri)
of MS that have relapses. New
drugs are being tested to see if Good (they can work well):
they work against progressive
• daclizumab (Zinbryta)
(non-relapsing) types of MS. We
hope that the first one that works • dimethyl fumarate (Tecfidera)
against primary progressive MS, • fingolimod (Gilenya)
ocrelizumab, will be available in
2017 or 2018. Find out more on Moderate (they can work
page 46. fairly well):
• glatiramer acetate (Copaxone)
Each DMT has two names:
• five different beta interferons
• its ‘generic’ name. This is the (Avonex, Betaferon, Extavia,
drug’s actual name Plegridy and Rebif)
• its brand name. This is the • teriflunomide (Aubagio)
name used by the company
The DMT that works against
who makes it
progressive MS, ocrelizumab,
hasn’t been licensed yet. So it’s

10 Disease modifying therapies (DMTs) for MS


too early to say for sure where it when it comes to how well they
belongs on this list. work, their risk of side effects and
who can have each drug.
On pages 27 and 28 you’ll find a
chart showing how the drugs rank
How do DMTs work? “When my consultant
DMTs work by making your first prescribed my
immune system less active. That DMT, I didn’t think to
way it won’t attack your brain and ask anything about the
spinal cord so much. drugs. I’d recommend
getting hold of some
This means less inflammation written information
and damage. You’ll still be able to before that first
fight off infections but perhaps not appointment, so you
quite as well as before. can work out what you’d
like to discuss with your
consultant.”
Louisa
How you take DMTs
Tablets - Some DMTs are tablets you take once or twice a day.

Infusions - You take some DMTs through an ‘infusion’ (a ‘drip’). You


go to hospital for this, maybe staying the night.

You sit in a chair or lie on a bed. The drug is pumped into your
bloodstream through a needle that goes into a vein in your arm or
leg. An infusion takes two to four hours depending on the drug.

How often you have infusions is different for each drug. It can be
every four weeks or every six months. For one DMT people usually
only ever need two or three infusions.

Injections - Some DMTs you inject yourself with. You could ask
a friend or a relative to do it. Depending on the drug you’ll inject
every other day, three times a week, once a week or every two to
four weeks.

Injecting often just means clicking on a ‘pen’ that you hold against
your skin. You don’t see the needle go in. Many people who didn’t
like the idea of injecting find they soon get used to this.

Your MS nurse or someone in your MS team can teach you to


get good at injecting. This cuts the chance of side effects (such as
infections) on the skin where you inject.

Disease modifying therapies (DMTs) for MS 13


What could a DMT do for me?
DMTs won’t cure your MS and All our brains get a bit smaller as
they can’t undo any disability you we get older but with MS this can
already have. Tackling this is a top happen faster. DMTs can stop this
priority for research. But taking a for many people.
DMT can mean you have:
Read more on pages 29 to 50
• fewer relapses about how good each drug is
• relapses that aren’t as serious at cutting relapses and slowing
down how fast people’s disability
• a slow-down in how fast your
gets worse.
disability gets worse
• less build-up of damage Why starting treatment
(lesions) in your brain or spinal early is best
cord (seen on an MRI scan). Evidence shows that DMTs work
better the earlier you start taking
In fact, if treatment works very
them. Damage caused by MS
well there may be no signs that
builds up over time. So the sooner
your MS is active at the moment.
you take a DMT, the less your brain
That means:
and body is likely to suffer this.
• you’re no longer having How early is ‘early
relapses treatment’?
• your disability isn’t getting The Association of British
worse Neurologists (ABN) recommends
• MRI scans show lesions in your treatment starts as soon as
brain have stopped growing possible after you’re first told you
and/or there are no new ones have MS. Guidelines from NICE
• your brain isn’t shrinking also say that, if you’re diagnosed
any faster with relapsing MS, your MS

14 Disease modifying therapies (DMTs) for MS


specialist should talk to you Were you diagnosed a long time
about treatment and give you ago and haven’t yet taken a DMT?
information about it. You should If you qualify for one, it’s never
also have a follow-up appointment too late to start. It won’t undo any
six weeks after you’re diagnosed to disability you’ve already got but it
talk about treatment. could slow down how fast things
gets worse. Starting a DMT now is
What else should happen? better than not taking one at all.
You should have a review of your
MS and its treatment at least once How do I get DMTs?
a year. This is true no matter what DMTs can only be prescribed by a
kind of MS you have and even neurologist or, in some places, by
if you’re not taking a DMT. This a consultant nurse.
should be with a neurologist who
specialises in MS. All but two of the DMTs in this
booklet are now available in
Guidelines also say MRI scans the UK on the National Health
are useful in keeping track of Service (NHS). We hope that the
how active your MS is. You’ll have newest ones (daclizumab and
check ups with your MS specialist, ocrelizumab) will become available
too. Scans and your check ups sometime in 2017 or 2018.
will help with decisions about
treatment. Your MS specialist follows
guidelines about which DMTs
You and your specialist should you can have. He or she will bear
agree your decisions about in mind:
treatment together. Agree what
you both want from treatment • how many relapses you’ve
and which drug could be right had in the last year or two
for you. You should both come • how bad they were
back to the decision you made • if you have tried another DMT
and look at it again, ideally once but it didn’t work for you
a year.

Disease modifying therapies (DMTs) for MS 15


• how active your MS is book an appointment yourself, or
you can ask your GP or MS nurse
In the past guidelines said that to to refer you.
get a DMT you needed to have
‘active’ MS and this meant at least You should have your treatment
two relapses in the last two years. looked at once a year at least.
But ABN guidelines from 2015 say This is true whether you’re taking
more and more MS specialists a DMT or not.
see ‘active’ MS as meaning you’ve
If you’re not happy with how
had just one recent relapse and/or
you’re being treated, you have
MRI scans that show new damage
the right to ask for a second
(lesions) in your brain.
opinion. You could ask your
You’re usually offered harder- neurologist to arrange for you
hitting drugs (with more serious to see another specialist at the
side effects) only after other same hospital, for example.
drugs with fewer side effects fail
Find out more at www.nhs.uk
to control your MS. But in some
Put ‘second opinion’ in the
circumstances you might be able
search box.
to choose a harder-hitting drug
from the start. If you’re having problems getting
treatment check out our Access to
We don’t know yet exactly who will
Medicines guides.
qualify to get ocrelizumab when it
becomes available. This is the only www.mssociety.org.uk/
DMT that works against primary treatmeright
progressive MS.

You have the right to ask for an


appointment with your specialist.
You don’t need to wait until you’re
offered one. Depending on where
you live, you might be able to

16 Disease modifying therapies (DMTs) for MS


Making my decision about DMTs
Taking a DMT can seem get pregnant should avoid
complicated, perhaps even scary. some DMTs
You might think it’s too soon and
you’ll wait and see what happens “Make sure that you
with your MS. get all the information
you need about your
Treatment has risks but so does
different options. Think
leaving your MS untreated. Not
about them, discuss
taking a DMT can mean your MS
them, weigh everything
gets much worse in the long run.
up and make an
And the evidence shows early
informed choice.”
treatment is likely to make the
Shirlee
most difference to your MS.

Before you decide these are Information to help


questions to ask: me decide
Get hold of good-quality treatment
• how well could a DMT keep information from an MS specialist
my MS under control? or MS organisation. Not everything
• what side effects might I get? on the internet is accurate or
• how do I take the drug and relevant to your situation. And you
how often? can get a biased view of treatment.
• what tests and check ups will I People tend to post on the web
need while taking it? when their treatment isn’t working,
not when it’s going well.
• how does a drug fit into
the life I lead? For example, Specialists are using MRI scans
injectable drugs may not be more and more to see how
best for people who travel a active someone’s MS is and what
lot. And women wanting to treatment to go for. Together with

18 Disease modifying therapies (DMTs) for MS


the check ups your MS specialist When thinking about side effects,
gives you, scans can help you you’ll need to know:
decide about treating your MS.
• what the side effects are and
Spend time with someone who how likely you are to get them
can help you understand what • how serious they could be.
you need to know. Some are mild and go with
It’s best to make decisions time. Others could be serious,
together with your neurologist or even put your life at risk
and, if you have one, your MS • how you would cope with side
nurse. Talking to your GP, friends effects. What one person can
and family and other people with live with someone else might
MS might help too. not want to put up with. Get
support from your MS
Side effects team, especially the MS nurse.
Like any medicine, DMTs can The companies that make
have side effects. Not everybody the drugs also run support
gets them or gets them as services like helplines
badly as other people. Doctors • what tests you will need. To
describe DMTs as ‘well tolerated’. check for side effects you may
This means not many people need regular monitoring, such
stop taking them because of as blood tests
side effects.
Your neurologist or MS nurse will
We know a lot about the MS tell you what side effects to look
drugs that have been around a out for. If you find side effects of
long time. We know less about your DMT are too much, speak to
the newer ones. We’re learning your specialist. It might be possible
more over time. As a general rule, to change to another drug.
the better a drug is at controlling
MS, the more risk there is of
serious side effects.

Disease modifying therapies (DMTs) for MS 19


We’ve listed some of the most that’s not as good at controlling
common and most serious ones MS but has fewer side effects and
for each drug on pages 29 to 50. is easier to take.

Weighing up the risks Differences between trials can


Only you can decide what level affect how good a drug appears
of risk you’re happy to take. You’ll to be.
need to weigh up:
• One trial might test a drug on
• possible risks against the people with mild MS, while in
benefits you could enjoy another trial people’s MS is
• taking a DMT with fewer side much worse
effects but less impact, against • How long a trial lasts can affect
a DMT with better results but how good a drug’s results look
more risk of serious side effects • Older trials often compared
• the risk of not being treated a drug against a placebo (a
dummy treatment with no
Comparing DMTs drug in it). Trials today usually
It can help to look at how the compare a new drug against
different drugs have done in an existing MS drug. A drug
trials. They tell us how well DMTs usually gets better results
have controlled MS for large when compared to a placebo
numbers of people. They show us
what side effects people can get These differences could unfairly
and how likely these are. But they make some drugs look better than
can’t say for certain how you’ll others. A drug might look less
react to a drug. effective when the truth is, it works
very well for lots of people and
Your decision won’t be just about gives them a good quality of life.
which drugs get the best results in
trials. Your quality of life matters
too. You might choose a drug

20 Disease modifying therapies (DMTs) for MS


“Talking to other ‘Since starting my DMT
people with MS the side effects make me
has helped me a lot feel worse’
– people in the same Some side effects get less or go
position, people who’ve away with time. If you have an
been through it. I meet MS nurse they can often help
people through local with managing ones that don’t.
MS exercise groups, If they’re too much, speak to your
MS Society support specialist. It might be possible to
groups, or just change to another drug after a
bumping into them few months.
at appointments.”
Lorraine ‘Even though I’m taking my
DMT I’ve had a relapse’
It can take months before you get
Sticking with the treatment
the maximum protection from a
Except for one, all DMTs need to
DMT. So you might have a relapse
be taken long term. You might
before then. Even when it’s
find it hard to keep taking yours.
working a DMT might not stop all
‘I’ve started taking my DMT relapses, but it can make relapses
but don’t feel any better. Is it less serious.
working?’ The drugs can also slow down
Some people feel better straight how fast MS causes you disability.
away. But it can take six months So the DMT can be making a
before a drug starts working. MRI difference to that even if you get
scans can show the drug is making a relapse. If you keep getting
a difference. Over a long time your relapses your specialist can put
chances of having a relapse or you on a harder-hitting drug.
more disability can fall even if you
might not feel much better.

Disease modifying therapies (DMTs) for MS 21


‘I forget to take my DMT’ you decided earlier not to take a
DMT, you can change your mind.
or ‘I’m tired of taking it’
DMTs work best when you follow Switching to another DMT
how your specialist said you Your specialist may talk to you
should take them. If you find about switching from the drug
sticking to your treatment difficult, you’re on to another. You might
let your neurologist or MS nurse switch drugs because:
know. They can suggest tips to
make it easier or suggest a drug • you’re still getting relapses -
that might suit you better. maybe even worse than before

‘There are too many tests’ • MRI scans show new areas of
damage (lesions)
DMTs, especially the more
powerful ones, can have side • the DMT is no longer working
effects. That’s why you might need because your body is making
regular monitoring. Tests catch neutralising antibodies to it
problems early so that they can • you find it hard to take your
be treated before they get serious. DMT. Maybe side effects are
Before you start a DMT, your too much or you have an
specialist will talk to you about allergic reaction to the drug
tests you need. If tests are too • a treatment comes along
much for you, let your specialist that’s better for you
know. You might be able to switch
to another drug. You usually need to take a drug
for at least six months before
Looking again at what I switching (unless you get an
decided earlier allergy, then you stop it at once).
Once a year or so it’s a good idea It’s your right to ask about
for you and your MS team to look different drugs if you feel the one
again at what you decided about you’re on isn’t right for you.
treating your MS. For example, if

Disease modifying therapies (DMTs) for MS 23


Stopping DMTs What if I can’t take a DMT?
Your specialist might suggest you Not everyone with active MS
stop taking DMTs. This could be can take a DMT. We’ll hopefully
because your MS has changed soon have the first drug for
to non-relapsing secondary primary progressive MS (see
progressive MS and your disability page 46) but it’s not clear yet
keeps getting worse. If so, nearly who will qualify to get it. It’s also
all DMTs we have at the moment not clear whether you’ll get it if
won’t work. A new one we hope is you have secondary progressive
on its way, ocrelizumab, can work MS but you don’t have relapses.
against progressive MS but it’s not Researchers are working on new
clear yet whether it will be given drugs, so there’s always hope for
to people with non-relapsing the future if you’re turned down
secondary progressive MS. for the DMTs we have now.

If you want to talk to someone Other health problems can mean


about how you feel about deciding you can’t take DMTs. That’s why
about treatment, stopping your specialist will ask you about
treatment or changes to your MS, your health and other medicines
you can call: you’re taking. You might need
tests before you can take a DMT.
MS Helpline
Freephone 0808 800 8000 You still should see an MS
(weekdays 9am-9pm, closed bank specialist at least once a year to
holidays) check how you’re doing even if
you’re not taking a DMT. If you’re
Or email helpline@mssociety. not on one you can manage
org.uk your symptoms with medicines.
Steroids, for example, are good
Or check out our online forum
for more serious relapses.
at community.mssociety.org.uk/
forum

24 Disease modifying therapies (DMTs) for MS


Lots of people find booklets on all these. Call our
physiotherapy and alternative Helpline for them or find them
or complementary medicine on our website.
helpful. The MS Society has

Trying for a baby, pregnancy and breast feeding


If you’re a woman trying to have a baby, you’re pregnant or think you
might be, you’ll need advice from your MS specialist about taking
DMTs. Some don’t appear to harm unborn babies, but you shouldn’t
take others.

With some DMTs, before you start trying for a baby, you need to stop
taking it and let the amount of drug in your body fall to a safe level.
The time this takes – the ‘washout period’ – is different for each drug.

If you’re a woman who’s just given birth your chance of having a


relapse goes up. That’s why soon after the baby’s born mums are
recommended to start taking their DMT again (but not if they’re
breast feeding).

There’s no evidence yet of DMTs harming a man’s sperm. But if


you’re a man who wants to father a child get advice from your MS
specialist team.

To find out more about pregnancy and a particular DMT check out
our factsheet for that drug at www.mssociety.org.uk/dmts

Disease modifying therapies (DMTs) for MS 25


A quick guide to each drug
On pages 29 to 50 you’ll find In the past to get a DMT you
basic information on the DMTs needed to have active MS, with
that people can get on the NHS ‘active’ meaning at least two
at the moment. You’ll also read relapses in the last two years. But
about two that we hope will more and more neurologists say
become available in 2017 or 2018, you have ‘active MS’ if you’ve had
daclizumab and ocrelizumab. one recent relapse and/or on MRI
scans you have new or bigger
For each drug we explain who it’s lesions. This booklet uses this
for, how it works, how you take it newer definition of ‘active’ MS.
and what it could do for your MS.
We’ve also included the more
common or serious side effects.
Information in this booklet
We have more detailed factsheets shouldn’t be used instead of
about each of the DMTs you advice from your MS specialist
can get now. Find them at team. There are things
www.mssociety.org.uk/dmts individual to you that could
affect how likely you are to get
Who can have each DMT? a side effect.
What you’ll read in this booklet
about who can have DMTs mostly
follows the 2015 guidelines from
the ABN. These are the most
up-to-date guidelines on treating
MS. Compared to older guidelines
such as those from NICE, they say
more people can take these drugs
and they can take them earlier.

26 Disease modifying therapies (DMTs) for MS


DMTS AT A GLANCE
DMT impact on MS side effects used for
alemtuzumab relapsing MS,
(Lemtrada) especially if
HIGH very active

beta interferons relapsing MS,


(Avonex, or secondary
Betaferon, progressive MS
Extavia, Rebif, MODERATE
with relapses,
Plegridy)
or CIS
daclizumab relapsing MS
(Zinbryta)

GOOD

dimethyl relapsing MS
fumarate
(Tecfidera)
GOOD

fingolimod very active


(Gilenya) relapsing MS,
especially if
GOOD other DMTs
haven’t
controlled it
glatiramer relapsing MS
acetate or CIS
(Copaxone)
MODERATE

Disease modifying therapies (DMTs) for MS 27


DMTS AT A GLANCE
DMT impact on MS side effects used for
natalizumab very active
(Tysabri) relapsing MS,
HIGH especially
if other DMTs
haven’t
controlled it
ocrelizumab * * relapsing MS
(Ocrevus) or primary
progressive MS

teriflunomide relapsing MS
(Aubagio)

MODERATE

lowest risk of side effects

medium risk of side effects

highest risk of side effects

*When this booklet was written, ocrelizumab hadn’t been given the go-ahead to be used in any country.
So there’s no agreement yet about how to rate it for its side effects and how good it controls MS. See page
46 for more on how well it worked in a trial.

28 Disease modifying therapies (DMTs) for MS


Alemtuzumab Alemtuzumab stops them getting
into your brain and spinal cord
Brand name Lemtrada before they can damage your
You pronounce these: allem- nerves there. This drug ‘resets’
TOOZER-mab and lem-TRAH-da your immune system. It changes
it for good, which is why you don’t
Who can have it?
have to keep taking it.
You can have this drug if:
How you take it
• you have relapsing MS and, You’re given this drug in hospital
despite taking another DMT, through a drip (an ‘infusion’). Most
you’ve had a relapse in the last people only need two infusions,
year and MRI scans show new spaced 12 months apart.
signs that your MS is active
(you have new lesions). For the first infusion you go to
hospital for five days in a row.
Alemtuzumab can be used as your Each day you have an infusion
first DMT if you’ve had a recent that takes about four hours. You
relapse and/or MRI scans show might go home every day two
new signs that your MS is active. In hours after your infusion or you
these cases it can be used whether may stay in hospital for your
you’ve tried another DMT or not. treatment.
How it works You have the second infusion a
Alemtuzumab kills certain types year later, over three days in a
of cells made by your immune row, again for about four hours
system. Called T and B cells, each day. Some people need a
they normally attack viruses and third or fourth infusion before the
bacteria that get into your body. drug works.
But in MS they attack your nerves
by mistake.

Disease modifying therapies (DMTs) for MS 29


How well does 59% of people on beta interferons
alemtuzumab stayed free of relapses.
work? HIGH
The effectiveness of
this drug is classed as ‘high’.
orange = no relapses

Relapses dropped by: 50-55%


compared to beta interferons Trial two
65% of people who took
This means that in trials, on alemtuzumab in another trial
average, people saw a 50-55% stayed free of relapses over two
drop in the number of relapses years. They’d taken a DMT before
they had. This was compared to that hadn’t stopped their relapses.
people who took beta interferons,
a standard treatment for MS.

How many people stayed free


of relapses when they took
47% of people on beta interferons
this drug?
stayed free of relapses.
Trial one
78% of people who took
alemtuzumab in one trial stayed
free of relapses for two years.
They’d never taken a DMT before. orange = no relapses

Disability getting worse was


slowed down by: up to 42%
compared to beta interferons

This means that in one trial, on


average, people saw a 42% drop
in the risk of their disability getting

30 Disease modifying therapies (DMTs) for MS


worse. This was compared to What about side
people who took beta interferons. effects?
Highest risk
How many people’s disability
didn’t get worse when they took Compared to other DMTs the risk
this drug? of side effects, especially serious
ones, is among the highest.
Disability didn’t get worse over
two years for 87% of people who More than one in ten people get
took alemtuzumab. infections of the chest, throat,
urinary tract and sinuses (the
spaces around your nose).

After an infusion most people get


one or more of these: headaches,
Disability didn’t get worse for
rash, fever, feeling or being sick,
80% of people who took beta
hives (a skin rash), itching, going
interferons.
red in the face and neck and
feeling tired. These usually soon
go away.

You’ll need tests to check for side


purple = disability didn’t get worse
effects for four years after your
In the other trial, people taking last infusion.
alemtuzumab saw a 30% drop in
Thyroid problems
the risk of their disability getting
This drug has a common side
worse. But this drop wasn’t big
effect that’s more serious. Up to
enough to be seen as ‘significant’.
four in ten people get a problem
In other words, it could have
with their thyroid. It’s treatable
happened by chance and not
and needs lifelong medication.
because of the drug.
You can still carry on taking
alemtuzumab.

Disease modifying therapies (DMTs) for MS 31


ITP • Extavia
Between one and three people • Plegridy
in a hundred get a problem with • Rebif
their blood called ITP (immune
thrombocytopenic purpura). Who can have them?
It can be very serious but it’s You can have these drugs if:
treatable if caught early by a
blood test. Symptoms include • you have relapsing MS and
bruising and bleeding too easily. you’ve had a recent relapse
and/or MRI scans show new
Everyone taking alemtuzumab signs that your MS is active
will be monitored for problems (you have new lesions)
with their thyroid and blood. Your • you have secondary
health care team should also progressive MS but you still
tell you what to look out for and have significant relapses
what to do if you notice signs of
• you have a clinically isolated
these problems.
syndrome or CIS (a first attack
There can be other less common of MS-like symptoms) and a
side effects with alemtuzumab. brain scan shows you’re likely
Our factsheet has more details at to go on to get MS
www.mssociety.org.uk/dmts
How they work
Your body makes its own
Beta interferons interferons (a protein) to dampen
You pronounce this: BEE-ter inter- down inflammation. These drugs
FEER-ons are man-made versions. They
can reduce (and might prevent)
There are five beta interferons. the inflammation that damages
Their brand names are: nerves in MS.

• Avonex
• Betaferon

32 Disease modifying therapies (DMTs) for MS


How you take them
Beta interferons are all injected. inject without you needing to see
Many come in a ‘pen’ that lets you the needle go into your skin.

Avonex Injected into Comes as a pre-filled Once a week


muscle syringe, automatic
injecting pen or as
powder that you mix
before you inject it
Betaferon Injected under Comes as a powder Every other
the skin that you mix before day
you inject it

Extavia Injected under Comes as a powder, Every other


the skin that you mix before day
you inject it with a
syringe or automatic
injecting pen
Plegridy Injected under Comes as a pre-filled Every two
the skin syringe or automatic weeks
injecting pen

Rebif Injected under Comes as a pre-filled Three times


the skin syringe, automatic a week
injecting pen or the
RebiSmart electronic
injection device

Disease modifying therapies (DMTs) for MS 33


How well do beta What about side
interferons effects?
work? MODERATE Lowest risk
The effectiveness of Compared to other
these drugs is classed DMTs the risk of side effects,
as ‘moderate’. especially serious ones, is among
the lowest.
Relapses dropped by: 33%
At least one in ten people find
This means that in trials, on that after the injection they feel
average, people saw a 33% drop like they have flu, with headaches,
in the number of relapses they muscle aches, chills or a fever.
had. This was compared to people
who took a placebo, a dummy These usually last for no more
treatment with no drug in it. than two days (48 hours) after the
injection and often get better the
Disability getting worse was longer you use the drug. Injecting
slowed down by: a modest before you sleep can help, and so
amount can ibuprofen or paracetamol.
This means that in trials, on Your skin can become red, hard,
average, people saw only a bruised or itchy where you
modest drop in the risk of their inject. Beta interferons might
disability getting worse. This cause depression, so you might
was compared to people who not be given one if you’ve had
took a placebo. depression in the past.
Long-term evidence from people There can be other less common
on beta interferons for years side effects with beta interferons.
shows their effect is much bigger Our factsheet has more details at
than ‘modest’ if you start one www.mssociety.org.uk/dmts
early on in your MS.

34 Disease modifying therapies (DMTs) for MS


Daclizumab How it works
Your immune system makes cells
Brand name Zinbryta
to fight off viruses and bacteria
You pronounce these: dack-LEE-
that get into your body. But in MS
zoo-mab and zinn-BRITE-er
these cells are thought to target
Who can have it? your nerves by mistake.
This drug is licensed to treat Daclizumab kills one type of
‘active’ relapsing MS but it’s not these, called T cells, before they
yet known for sure who might get get into your brain and spinal
this drug. It’s expected that you’ll cord. This stops them attacking
be able to have it if: the covering (myelin) around your
nerves. That protects the nerves
• you have relapsing MS and
from inflammation and damage.
you’ve had a recent relapse
This drug also rebalances your
and/or MRI scans show new
immune system.
signs that your MS is active
(you have new lesions) How you take it
You inject it under your skin once
It’s not yet been decided if you
every four weeks.
can have this as your first DMT or
only if another drug has already How well does
failed to control your MS. This is daclizumab work?
because of possible side effects.
The effectiveness of GOOD
NICE and other organisations that this drug is classed
decide which drugs are made as ‘good’.
available on the NHS across the
Relapses dropped by: 45%
UK are now looking at this drug.
compared to a beta interferon
We hope it will become available
in 2017 or 2018.

Disease modifying therapies (DMTs) for MS 35


This means that in a trial, on worse. This was compared to
average, people saw a 45% drop people who took a beta interferon.
in the number of relapses they
had. This was compared to people How many people’s disability
who took beta interferons, a didn’t get worse when they took
standard treatment for MS. this drug?

How many people stayed free of Disability didn’t get worse over
relapses when they took this drug? three years for 87% of people who
took daclizumab.
67% of people who took
daclizumab stayed free of
relapses over nearly three years.

Disability didn’t get worse for 82%


of people on a beta interferon.

51% of people who took a beta


interferon stayed free of relapses.

purple = disability didn’t get worse

What about side


orange = no relapses
effects?
Medium risk
Disability getting worse was
slowed down by: 27% compared Compared to other
to beta interferons DMTs the risk of side effects,
especially serious ones, is
This means that in a trial, on somewhere in the middle.
average, people saw a 27% drop
in the risk of their disability getting Four in ten people got skin rashes
in one trial. More than one in ten

36 Disease modifying therapies (DMTs) for MS


got headaches, cold and flu-like How you take it
symptoms, fever, infections of
You take it as a tablet twice a day.
the throat and urinary tract or
liver problems. Other side effects How well does
could include swollen glands dimethyl
and depression. fumarate work? GOOD
The effectiveness of
Dimethyl this drug is classed as
‘good’
fumarate Relapses dropped by: 53%
Brand name Tecfidera
You pronounce these: This means that in one trial, on
dye-METH-ul FUME-er-ayt average, people saw a 53% drop
and teckfer-DAIR-ah in the number of relapses they
had. This was compared to people
Who can have it?
who took a placebo, a dummy pill
You can have this drug if: with no drug in it.

• you have relapsing MS and How many people stayed free


you’ve had a recent relapse of relapses when they took
and/or MRI scans show new this drug?
signs that your MS is active
(you have new lesions) 73% of people who took dimethyl
fumarate in one trial stayed free
How it works of relapses for two years.
We don’t know exactly how this
drug works, but it dampens down
inflammation. This may be helpful
in reducing the inflammation that
causes damage in the brain and
spinal cord of people with MS.

Disease modifying therapies (DMTs) for MS 37


54% of people who the placebo Results weren’t quite as good
stayed free of relapses. in another trial. Then 71% who
took dimethyl fumarate had no
relapses compared to 59% who
took a placebo. And 87% who
took dimethyl fumarate saw
orange = no relapses no worsening of their disability
compared to 83% of people
Disability getting worse was
on the placebo. This difference
slowed down by: 38%
in disability getting worse isn’t
This means that in one trial, on big enough to be statistically
average, people saw a 38% drop significant. That means it might
in the risk of their disability getting have happened by chance, not
worse. This was compared to because of the drug.
people who took a placebo.
What about side
How many people’s disability effects?
didn’t get worse when they took Medium risk
this drug? Compared to other
DMTs the risk of side
Disability didn’t get worse over
effects, especially serious ones, is
two years for 84% of people who
somewhere in the middle.
took dimethyl fumarate.
In one study up to four in ten
people had one or more of these:
flushing (going red in the face),
feeling hot, upset stomach,
Disability didn’t get worse for 73%
diarrhoea, headache or
of people who took the placebo.
feeling sick.

purple = disability didn’t get worse

38 Disease modifying therapies (DMTs) for MS


PML: a very rare side effect Who can have it?
Dimethyl fumarate can increase In England and Northern Ireland
your chances of getting a you can have fingolimod if:
rare brain infection called
PML (progressive multifocal • you have the same or an
leukoencephalopathy). The risk increased number of relapses
is extremely small but PML can despite treatment with beta
kill or leave a person seriously interferons (Avonex, Rebif,
disabled. As of July 2016 only four Betaferon, Extavia and
people have got it out of over Plegridy) or glatiramer acetate
100,000 across the world taking (Copaxone)
dimethyl fumarate.
In Scotland and Wales you can
There’s a virus that makes your have it if:
risk of getting PML higher. Your
specialist can tell from a blood test • you have highly active
if you have it. If you do, your MS relapsing remitting MS and
team will talk to you about PML another DMT hasn’t worked
and what you can do about it. • you’ve had two or more
disabling relapses in one year
There can be other less common
and an MRI scan shows you’re
side effects with dimethyl
getting more lesions
fumarate. Our factsheet has
more details at www.mssociety. Across the UK:
org.uk/dmts
You can be switched to

Fingolimod fingolimod if you’re taking


natalizumab (Tysabri) and are at
Brand name Gilenya high risk of developing the brain
You pronounce these: finn- infection PML.
GOLLY-mod and jill-EN-ee-yer
The most recent ABN guidance
suggests that fingolimod can also

Disease modifying therapies (DMTs) for MS 39


be used as your first DMT if you had. This was compared to people
have highly active relapsing MS. who took a placebo, a dummy pill
with no drug in it.
How it works
How many people stayed
Special types of cells in your
free of relapses when they
immune system, called T and B
took this drug?
cells, are thought to cause a lot of
the damage in MS. They normally 70% of people on fingolimod
kill viruses and bacteria that get stayed free of relapses over
into your body but in MS they two years.
damage your nerves. Fingolimod
stops them leaving your lymph
nodes where they’re made. This
means far fewer of them get into
your brain and spinal cord where
they would attack the covering 46% of people who took the
(myelin) around your nerves. placebo stayed free of relapses.

How you take it


Fingolimod is a tablet you take
once a day.
orange = no relapses

How well does


Disability getting worse was
fingolimod work?
slowed down by: 30%
The effectiveness GOOD
of this drug is classed This means that in a trial, on
as ‘good’. average, people saw a 30% drop
in the risk of their disability getting
Relapses dropped by: 54% worse. This was compared to
people who took a placebo.
This means that in a trial, on
average, people saw a 54% drop
in the number of relapses they

40 Disease modifying therapies (DMTs) for MS


How many people’s disability After your first dose of fingolimod
didn’t get worse when they took your heart can slow down or its
this drug? beat becomes irregular. So you’re
given your first dose in hospital
Disability didn’t get worse over and monitored for at least six
two years for 82% of people who hours. Your heart soon goes back
took fingolimod. to normal.

PML: a very rare side effect

People using another drug,


Disability didn’t get worse for 76% natalizumab, are sometimes
of people who took a placebo. switched to fingolimod. This
is because they’re at risk of
a rare brain infection called
PML (progressive multifocal
leukoencephalopathy). But there’s
purple = disability didn’t get worse
also a risk of PML when you take
What about side fingolimod. PML can kill or leave
effects? you seriously disabled but the risk
Medium risk of getting it while on fingolimod
is extremely small. As of July 2016
Compared to other
only three people have got it in
DMTs the risk of side
more than 125,000 across the
effects, especially serious ones,
world taking fingolimod. There’s
is somewhere in the middle.
a virus that makes your risk of
More than one in ten people get getting PML higher. Your specialist
diarrhoea, back pain, cough, can tell from a blood test if you
headache, tiredness or have have it. If you do, your MS team
more chance of getting infections will talk to you about PML and
like flu. what you can do about it.

Disease modifying therapies (DMTs) for MS 41


There can be other less common the coating (myelin) around
side effects with fingolimod. Our your nerves.
factsheet has more details at
www.mssociety.org.uk/dmts How you take it
You inject it under the skin three

Glatiramer times a week.

How well does


acetate glatiramer acetate
Brand name Copaxone work? MODERATE
You pronounce these: gla-TIR-a- The effectiveness of
mer ASS-er-tate and co-PAX-own this drug is classed as
‘moderate’.
Who can have it?
You can have this drug if: Relapses dropped by: 34%

• you have relapsing MS and This means that in a trial, on


you’ve had a recent relapse average, people saw a 34% drop
and/or MRI scans show new in the number of relapses they
signs that your MS is active had. This was compared to people
(you have new lesions) who took a placebo, a dummy
• you have a clinically isolated treatment with no drug in it.
syndrome or CIS (a first attack How many people stayed
of MS-like symptoms) and a free of relapses when they took
brain scan shows you’re likely this drug?
to go on to get MS.
77% of people on glatiramer
How it works acetate stayed free of relapses
It’s not clear how glatiramer over one year.
acetate works, but it seems to
kill the immune cells that attack

42 Disease modifying therapies (DMTs) for MS


66% of people who took the After their injection some people
placebo stayed free of relapses. go red in the face (flushing), feel
breathless or get a pounding
heart for a short time. Most
people find that where they inject
into their skin it bruises, becomes
orange = no relapses itchy or goes red or hard. You
could also get dents in your skin
Disability getting worse was
where you inject. More than one
slowed down by: a modest
in ten people also get one or more
amount
of these: headaches, a rash, flu-
This means that in a trial, on like symptoms, feeling anxious or
average, people saw a modest depressed, joint or back pain or
drop in the risk of their disability feeling weak or sick.
getting worse. This was compared
There can be other less common
to people who took a placebo.
side effects with glatiramer
Long-term evidence from people acetate. Our factsheet has more
on glatiramer acetate for years details at www.mssociety.org.uk/
shows its effect is much bigger dmts
than ‘modest’ if you start it early
on in your MS. Natalizumab
What about side Brand name Tysabri
effects? You pronounce these: nata-LEE-
Lowest risk zoo-mab and ty-SAB-ree

Compared to other Who can have it?


DMTs the risk of side You can have this drug if:
effects, especially serious ones,
is among the lowest. • you have relapsing MS and
you’ve had a relapse in the last
year and MRI scans show new

Disease modifying therapies (DMTs) for MS 43


signs that your MS is active the infusion, but you don’t need to
(you have new lesions). This is stay overnight.
despite taking another DMT
How well does
• you have relapsing MS and natalizumab work?
you’ve had at least two relapses HIGH
The effectiveness
in the last year and MRI scans
of this drug
show new signs that your MS
is classed as ‘high’.
is active. This is happening
whether or not you’ve been Relapses dropped by: 68%
taking another DMT
This means that in a trial, on
How it works average, people saw a 68% drop
Your immune system makes in the number of relapses they
special types of cells to fight had. This was compared to people
off viruses and bacteria. But in who took a dummy treatment
MS these cells are thought to with no drug in it.
target your nerves by mistake.
Natalizumab kills these cells How many people stayed
(called T cells) before they get free of relapses when they
into your brain and spinal cord. took this drug?
This stops them attacking
67% of people who took
the covering (myelin) around
natalizumab stayed free of
these nerves and causing
relapses over two years.
inflammation and damage.

How you take it


Natalizumab is given through a
drip (an ‘infusion’). It takes about
an hour, with another hour to
be monitored. You need to go to
hospital once every four weeks for

44 Disease modifying therapies (DMTs) for MS


41% of people who took the What about side
placebo stayed free of relapses. effects?
Highest risk
Compared to other
DMTs the risk of side
orange = no relapses effects, especially serious ones,
is among the highest.
Disability getting worse was
slowed down by: 42% You might get these for a while
after an infusion: hives (itchy
This means that in a trial, on skin), headache, shivers, stomach
average, people saw a 42% drop upset, joint pains, sore throat or
in the risk of their disability getting feeling sick, tired or dizzy.
worse. This was compared to
people who took a placebo. PML: a rare but serious side effect

How many people’s disability Natalizumab can increase your


didn’t get worse when they took chances of getting a rare brain
this drug? infection called PML (progressive
multifocal leukoencephalopathy).
Disability didn’t get worse over Up to one in four who get PML
two years for 83% of people who can die. The risk of getting PML
took natalizumab. is small. Four in every thousand
people who take natalizumab get
it. By 2016 around 600 people
taking it had got PML (out of over
140,000 people across the world
Disability didn’t get worse for 71%
on this drug).
of people on the placebo.
Having a virus called the JC virus
makes your risk of getting PML
higher. Only one in 10,000 people
purple = disability didn’t get worse

Disease modifying therapies (DMTs) for MS 45


who don’t have this virus get for people with ‘active’ relapsing
PML. If you do have it one in 500 MS but also primary progressive
people at the highest risk get PML MS (MS without relapses). It’s not
in the first two years. After that the yet clear if the drug will work for all
risk goes up a lot. If your risk of people with primary progressive
PML is high your MS specialist will MS or just some.
change your treatment, perhaps
switching you to a different DMT. Ocrelizumab can also work if you
have secondary progressive MS if
If you take natalizumab you’ll get you still have relapses. But it’s not
blood tests that look for the virus been tested against secondary
that causes it. If you’re at risk of progressive MS that doesn’t
PML you’ll be checked for early involve relapses. If you have that
signs of it. Your health care team kind of MS we don’t know if you’ll
will tell you what to look out for be given this drug.
and what to do if you notice signs
of PML. We hope ocrelizumab will become
available in the UK in 2017 or 2018.
There can be other less common
side effects with natalizumab. How it works
Our factsheet has more details at Your immune system makes
www.mssociety.org.uk/dmts special cells that attack and
kill viruses and bacteria. In MS

Ocrelizumab these cells attack your nerves


by mistake. Ocrelizumab sticks
Brand name Ocrevus to one type of these cells called
You pronounce these: ock-ree- B cells. This stops them from
LEE-zoo-mab and ock-REE-vuss. getting into your brain and spinal
cord where they would destroy
Who can have it? the covering around your nerves
It’s not yet been decided who might (myelin), causing inflammation
get from this drug when it becomes and damage.
available. Trials show it can work

46 Disease modifying therapies (DMTs) for MS


How you take it 68% of people who took beta
You’re given this drug through a interferon stayed free of relapses.
drip (an ‘infusion’) in hospital once
every six months.

How well does it work


orange = no relapses
on relapsing MS?
Relapses dropped by: 46% Disability getting worse was
compared to a beta interferon slowed down by: 43% compared
to a beta interferon
This means that in one trial, on
average, people saw a 46% drop This means that in a trial, on
in the numbers of relapses they average, people saw a 43% drop
had. This was compared to people in the risk of their disability getting
who took a beta interferon, worse. This was compared to
a standard treatment for MS. people who took a beta interferon.

How many people stayed How many people’s disability


free of relapses when they didn’t get worse when they took
took this drug? this drug?

81% of people who took Disability didn’t get worse over


ocrelizumab stayed free of two years for 91% of people who
relapses over two years. took ocrelizumab.

Disease modifying therapies (DMTs) for MS 47


Disability didn’t get worse for around 25% in the risk of their
84% of people who took a beta disability getting worse. This was
interferon. compared to people who took a
placebo, a dummy treatment with
no drug in it.

The drug also helped people walk


purple = disability didn’t get worse better, slowed down how fast their
brains were shrinking and made
A second trial gave results a lot
lesions in their brain smaller.
like this.
What about side effects?
Ocrelizumab seems to be a much
better treatment for relapsing Compared to other DMTs the risk
MS than beta interferons. It also of side effects, especially serious
seems to be as good as the best ones, doesn’t seem high.
of the other DMTs, but without as
In trials side effects weren’t any
many side effects.
more serious than those you get
How well does it work on with beta interferons. Up to four in
progressive MS? ten people had at least one fairly
mild reaction to their infusion.
Ocrelizumab’s effect on primary
progressive MS in trials may not Compared to other DMTs as good
seem very big but this type of at controlling MS, ocrelizumab
MS has always been the hardest seems so far to have far fewer
to understand and treat. It’s the side effects. In trials more people
first drug to work against primary taking this drug got cancer. It’s not
progressive MS. sure yet if this is a side effect of the
drug. So far there have been no
Disability getting worse was
cases of the brain infection PML.
slowed down by: 25%

This means that in a trial, on


average, people saw a drop of

48 Disease modifying therapies (DMTs) for MS


Teriflunomide How you take it
Teriflunomide is a tablet you take
Brand name Aubagio
once a day.
You pronounce these: terry-
FLOO-nee-mide and oh-BAH- How well does
jee-oh teriflunomide
work?
MODERATE

Who can have it?


The effectiveness of
You can have this drug if:
this drug is classed as
‘moderate’.
• you have relapsing MS and
you’ve had a recent relapse Relapses dropped by: 31%
and/or if MRI scans show new
signs that their MS is active This means that in a trial, on
(you have new lesions) average, people saw a 31% drop
in the number of relapses they
How it works had. This was compared to people
We don’t know exactly how this who took a placebo, a dummy pill
drug works but it dampens down with no drug in it.
inflammation. Your immune
system makes cells, called T cells, How many people stayed
that normally fight off viruses and free of relapses when they
bacteria that cause infections. But took this drug?
in MS these cells are believed to
57% of people who took
attack and damage the myelin
teriflunomide stayed free of
coating around your nerves.
relapses over two years.
T cells are white blood cells
(lymphocytes) and taking this
drug blocks them. Fewer of them
can get into your brain and spinal
cord and cause inflammation and
damage there.

Disease modifying therapies (DMTs) for MS 49


46% of people who took the Disability didn’t get worse for 73%
placebo stayed free of relapses. of people who took the placebo.

orange = no relapses
purple = disability didn’t get worse

Disability getting worse was


slowed down by: 30%
What about side
This means that in a trial, on effects?
average, people saw a 30% drop Lowest risk
in the risk of their disability getting
worse. This was compared to Compared to other
people who took a placebo. DMTs the risk of side effects,
especially serious ones, is among
How many people’s disability the lowest.
didn’t get worse when they took
this drug? More than one in ten people get
headaches, diarrhoea or feel sick.
Disability didn’t get worse over Your hair may get thinner but
two years for 80% of people who it grows back after six months.
took teriflunomide. You might be more likely to get
common infections like colds,
‘cold sores’, urinary tract or chest
infections.

There can be other less common


side effects with teriflunomide.
Our factsheet has more details
at www.mssociety.org.uk/dmts

50 Disease modifying therapies (DMTs) for MS


Questions to ask my MS
specialist
Talking about treatments with You can download this Talking
your MS specialist might not about treatments checklist
come easily for you. Time during at www.mssociety.org.uk/
your appointment can be short. talkingtreatments or call our
You can go into your appointment Helpline and ask for one to be
with questions only to realise sent to you.
afterwards you didn’t get answers
to them. The checklist was written when
DMTs were only given to people
It can help to make notes with relapsing MS. But with the
beforehand of what’s on your first DMT for primary progressive
mind and to write things MS hoped to be available in 2017
down during your visit. Taking or 2018, the checklist can now be
someone along with you to the used whether you have relapsing
appointment can also help make or progressive MS.
sure your questions get answered.
Things are chan
We’re learning more ab
To make things easier the MS sclerosis (MS) affects p
and the difference treat
Society has made a checklist Talking about treatments Drugs for relapsing type
Questions to ask
of questions you might want to my MS specialist
developing all the time.
you see your specialist
ask your specialist. There’s also questions. This checklis
you get answers.
suggestions of what to take to
appointments. No matter what type
have, official guidel
you should have a r
MS specialist at lea

For people with relapsing MS

Disease modifying therapies (DMTs) for MS 51


New words explained
Association of British a DMT (beta interferons or
Neurologists (ABN) – the glatiramer acetate) and MRI
professional body for MS scans show your MS is active
specialists. It recommends which (new lesions can be seen).
treatments are offered to people This also applies if you’re not
with MS. on a DMT but having frequent
relapses and/or MRI scans show
‘Active’ relapsing remitting MS – new lesions.
‘active MS’ once meant someone
who had two or more relapses in Immune system – how your
the last two years. Now many MS body defends you against the
specialists use it to mean people viruses and bacteria that cause
who’ve had just one recent infections. In MS this system
relapse and/or if MRI scans show attacks your central nervous
new signs their MS is active (with system by mistake.
new lesions).
Inflammation – when your
Central nervous system – your immune system reacts to
brain and spinal cord. Nerves attack or damage it sends more
carry messages between them blood and immune cells to the
which control how most parts of damaged area, making it swollen.
your body work. When MS causes inflammation
of the brain and spinal cord, it
Clinically isolated syndrome or starts to damage it, leading to
CIS – a first attack of MS-like symptoms.
symptoms. If scans show lesions
on your brain you’re likely to Lesions (also called ‘plaques’) –
have a second attack, then be areas of damage in your brain or
diagnosed with MS. Taking a DMT spinal cord caused by MS. They
makes this less likely. slow down or stop messages
travelling down nerves, affecting
‘Highly active’ relapsing remitting your control of parts of your body.
MS – when you have a relapse Lesions can be seen on MRI scans.
in the last year despite taking

52 Disease modifying therapies (DMTs) for MS


MRI scans –pictures of your be available on the NHS and how
brain or spinal cord made by they should be used.
‘magnetic resonance imaging’.
They show where MS is causing Progressive multifocal
inflammation and damage to the leukoencephalopathy (PML) – a
myelin around the nerves. rare but serious brain infection.
Some MS drugs (mostly
Myelin – a fatty covering around natalizumab) carry a risk of PML.
your nerves that becomes You’re most at risk if you have
damaged by your immune the JC virus, a common infection
system when you have MS. This that our immune system
interrupts messages that travel normally keeps under control. It
along your nerves, causing can become active when some
symptoms of MS. MS drugs cause changes to our
immune system. PML can cause
Nerves – bundles of fibres serious disability. Up to one in
along which signals travel from four who get it can die.
your brain or spinal cord. These
signals control how parts of Rapidly evolving severe relapsing
your body work, including your remitting MS – when someone
thinking and memory. has two or more disabling
relapses in one year and two
Neutralising antibodies – consecutive MRI scans show
antibodies are made by your more or bigger lesions.
immune system to kill viruses
and bacteria. Sometimes Relapse – a flare up or attack of
your immune system makes new MS symptoms or old ones
‘neutralising antibodies’ against get worse. Symptoms then ease
some MS drugs. This stops it off, go away completely or may
working and you might need a become permanent.
new one.

National Institute for Health and


Care Excellence (NICE) – part of
the Department of Health, NICE
produces guidelines for England
and Wales on which drugs should

Disease modifying therapies (DMTs) for MS 53


Further information
Library MS Helpline
For more information, research The freephone MS Helpline offers
articles and DVDs about MS confidential emotional support
contact our librarian. and information for anyone
affected by MS, including family,
020 8438 0900 friends and carers.
librarian@mssociety.org.uk
mssociety.org.uk/library Information is available in over
150 languages through an
Resources interpreter service.
Our award winning information
resources cover every aspect of 0808 800 8000
living with MS. (weekdays 9am-9pm,
closed bank holidays)
020 8438 0999 helpline@mssociety.org.uk
shop@mssociety.org.uk
mssociety.org.uk/
publications
About this resource
With thanks to all the people of the UK may change. Seek
affected by MS and professionals advice from the sources listed.
who contributed to this booklet.
References
If you have any comments on this A list of references is available on
information, please send them to: request, and all cited articles are
resources@mssociety.org.uk or available to borrow from the MS
you can complete our short online Society library (there may be a
survey at surveymonkey.com/s/ small charge).
MSresources
Contact the librarian on
Disclaimer: We have made 020 8438 0900, or visit
every effort to ensure that the mssociety.org.uk/library
information in this publication is
correct. We do not accept liability Photography
for any errors or omissions. Credit for photography belongs
Availability and prescribing to Simon Rawles (cover, p6, 17
criteria for drugs in various parts and 22), Amit Lennon (p6), Joe
McGorty (p11) and Jack
Boskett (p12).

This resource is
also available in
large print.

Call 020 8438 0999


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Contact us
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