So the next question is from an MSer who’s
asked, why can’t steroids get me back to
where I was after a relapse?
When I was looking at this question, I mean
the whole issue of relapse and the use of
steroids is a very difficult one and sometimes
a contentious one.
We don’t use steroids, I think, as often
as what we used to do because we know they
have a place, but they’re not the whole
answer.
Obviously, when people are early in the disease
and they’ve got a true relapsing remitting
form, then steroids can help in the reduction
of the inflammation.
They don’t… and I think what’s important
to state here is that steroids actually don’t
improve the outcome of the relapse recovery,
what they, if they’re going to work what
they do do is speed the recovery process up.
So actually there are a lot of people that
don’t like taking steroids because of the
side effects of steroids.
So they’re not doing their MS any detriment
by not having them and that’s something
that I always say in the relapse clinic.
But over time if there’s less inflammation,
so if it’s a less relapsing remitting form,
the steroids aren’t as effective because
there’s no active inflammation for them
to work on.
And I think we’ve all seen, whether it’s
from the medical side or people with MS, have
seen the, you know, the diagrams that actually
say when people have a relapse sometimes you
can lose a little bit of ground, and that
sort of fits in with this.
So, if you’re looking at relapse management
as a whole, which is why I actually chose
this question, because I think it’s important
to state that it isn’t all around the steroids,
so relapse management is around symptom management,
appropriate referral through to therapy.
So either neuro-physiotherapies or occupational
therapies or speech and language therapies,
depends upon what the, you know, the symptoms
that someone has come along with.
[02:09] It’s also, it could be about medication
around the symptom management and actually,
so if someone’s presenting with severe neuropathic
pain, steroids may not be the best option,
actually what may be is giving appropriate
medication that deals with the neuropathic
pain, because it may be the impact of the
pain that’s reducing someone’s mobility
or co-ordination and if you deal with that
pain, then that improves.
So, it’s not all around steroids.
But it’s also about assessing patients to
see are they eligible for any of the disease
modifying treatments.
If they’re on a disease modifying treatment
and they’re still relapsing, then there’s
obviously, there’s a reassessment is needed
there for a more appropriate treatment.
But there is also this natural progression
of the MS and at some point steroids will
stop being effective.
So that’s why the person who’s probably
sent this question is maybe at a point where
they’ve got less inflammation going on in
their MS.
But we still do use steroids, they still have
a place, certainly in the treatment, but it’s
also about knowing your body and knowing how
you are with the steroids and not being afraid
to not have them as well, because I think
there’s that fear that if I don’t have
them I’ve made things worse, which actually
isn’t the case.
But it’s also making sure that you get appropriate
advice re the steroids, so that is why we
would always say to people, again, contact
your MS care provider, whether that’s your
nurse or consultant or your GP.
Have you any infection going on?
I’m sure patients must get fed up of the
nurses saying, ‘Have you got a urine infection?’,
but often that’s because we know that can
be the driver for the increase of symptoms
and if there is infection going on there,
we don’t give steroids because it can actually
make you systemically unwell.
So it’s about checking that there’s no
infection and it’s about using them appropriately.
Okay, thanks for that.
It sounds, again, very individual.
That seems to be a bit of a theme with the
answers and the questions.
Yeah.
I was just wondering what’s in place if
someone isn’t going to get back to where
they were after a relapse.
How do you help people to cope with their
new way of life?
[04:35]
I think that’s an excellent question and
this is why it’s important that services
have a relapse service, and for me, if it
was someone who’d perhaps progressing from
relapsing remitting to secondary progressive
MS, again, it is around symptom management,
it is around referring through to neuro-rehabilitation.
So, one of the things I think we need be very
wary of is again, that we’ve moved to very
much a treatment-centred approach to people
and that isn’t for everyone, and also there
is an absolute fear when people have been
on treatment what is out there, and when we
haven’t, and I think we very need to regain
that balance, that symptom management and
treatment is as important as a disease modifying
treatment and they can’t be seen as different
entities.
So in relapsing remitting, they’re very
much running alongside one another and yeah,
perhaps for a time the disease modifying treatment
takes preference, but then comes a point where
it is the symptom management that is taking
preference.
So it’s about appropriate referrals out
there, it’s about a holistic approach to
the people.
And sometimes I think people feel bombarded
by exposure to physio, OTs, speech and language,
neuro-rehab, but it’s about looking at the
person as a whole and I know a lot of services
are trying to redress this balance by providing,
if you like, specific clinics for people with
a more progressive form of MS, and I think
that is right.
Okay, thanks again for that.
