Ask the expert: disease modifying drugs

Ask the expert: disease modifying drugs

A disease modifying drug or a disease
modifying treatment are the same thing. Some people refer to it as DMTs others
to DMDs. A disease modifying drug is usually given to people with relapsing
remitting multiple sclerosis to slow down the relapses, to prevent the
relapses from happening and also, in some cases, they slow down progression. There
is now, however, a drug for primary progressive MS, the new drug Ocrevus
which has recently been released. If you’re not sure about disease modifying
treatments and whether you may be eligible for these, the best person to
contact is your consultant neurologist or your MS specialist nurse if you have
access to them. Otherwise go through your GP and get a referral into the MS system. By being reviewed by the specialist
nurses or the consultant neurologist. Generally it’s the MS nurse who is
seeing patients regularly and monitoring the treatment that they’re on. The way
that we monitor whether the drug is working or not is by looking at any
relapses that that patient may have. So if somebody relapses on a treatment it
may mean that the drug perhaps isn’t working as effectively. It may mean that
there might be a lack of adherence to the therapy. We generally undertake MRI scans.
Now they’re not the be-all and end-all of ensuring that a drug is working,
however if there are new lesions that are seen on the MRI scan, or progression,
that again could mean that the drug isn’t working. EDSS will be looked at as
well so monitoring disability scores. Before you start on a treatment, we
assess the patient and they’re given a score (maybe it’s a low score of
1.0, 1.5, 2.0) and by recording that score on an annual basis we will know whether
progression is increasing or whether it’s staying stable. If that progression,
if the score is increasing, again that could mean that the patient isn’t doing
as well as expected on a treatment and may need considering for escalation of
therapy. Generally hair loss isn’t clumps of hair
that comes out. It usually is more kind of hair thinning and people will come to
clinic and they’ll show you that the hair is thinner or take pictures to
show that the hair has become thinner. Again it’s very individual for each
specific patient so some people will not get any, other people will feel that, you
know, when they shower, when they wash their hair, there is more
hair in the plug hole. Others will say that it’s just not a problem at all.
So because it’s such an individual thing, I would encourage patients saying that
it probably will just be hair thinning. It’s not going to be clumps of hair that
you lose so that you’ve got like little bald patches. Hair will regrow
generally over time but if it continues to be problematic then it does need
reviewing with your specialists. There is and what we would recommend
again, in the first instance, make sure that it is just a flushing due to the
Tecfidera and it’s not hypersensitivity or some sort of
anaphylactic reaction. Again it’s best to discuss it with the MS specialist
nurse, go into more detail about when this is happening, if there are any other
more worrying side effects that may be occurring or if it is just flushing post-
tablet. Again it’s best to document things down so you will be given a
booklet where you can monitor any side effects and chat either on the phone or
face to face with the MS specialist nurse about those side effects. Sometimes
altering the timing of the doses can help. In other cases it will disappear
possibly months into treatment. However if it is intolerable, some people have
found benefit from taking a 75 milligram dose of aspirin and again
it’s best to discuss with a specialist nurse whether that would be advisable in
your case. I think the recommendation is to take a short course of this low-dose
aspirin to see whether there are any benefits from taking that. Unfortunately
some people have given up on Tecfidera quite early on and we don’t know whether
these side effects may have waned during the treatment. But yes,
certainly discuss it with either other patients that are on Tecfidera or with your
MS nurse to get more advice on that. It’s going to be very individual to
that patient and the problem with MS is you don’t initially know whether
the drug is working for you because you’re not going to notice any
difference with your MS. It’s not going to have any effect on the symptoms of
your MS. It’s only going to be in time where we look at relapse rate, at
the EDSS and the MRI scans to see how well that person is doing on that
treatment. I certainly would say give it at least six months on a treatment
before making that decision, obviously with your clinicians on board.
However some people have had really intolerable side effects and just
cannot continue on the drug because of that. So it’s an individual thing but six
to 12 months if someone can persevere for that long. Depending on which infusion it is, either
Tysabri, Ocrevus or Lemtrada, it would be better to
discuss your symptoms with a nurse probably before you go for that infusion.
With Tysabri we generally say if the symptoms are quite bad, just delay it for
a few days up to a week. With Ocrevus, up to now we haven’t infused that many
patients with the treatment. It’s a relatively new treatment but we would
say if it’s an infection, if it’s more likely to be a chest infection or an ear
infection, we wouldn’t infuse a patient with an
infection. We would wait until all the symptoms had allayed before infusing. So
discuss it with the nurse, depending on the symptoms, we may well delay that
treatment just for a short while. Depending on which DMD, discuss it with
the MS nurse, but most of the disease modifying treatments we would
say yes it’s absolutely fine to have a flu jab. It’s not a live vaccine, it
shouldn’t have any effect on the MS and shouldn’t have any effect on the DMD.
With Ocrevus again that would need to be looked at in more detail so although
it’s not a live vaccine and you shouldn’t have a live vaccine with
Ocrevus, discuss the timing of your flu injection with either your GP or with an a
specialist MS nurse. We do know that there probably are
many people out there that are not on disease modifying treatments that
probably should be. The recommendation now, if people want to look at MS Time
Matters, this recommends that people start on treatments early. Lots of people
talk about progression from a mobility point of view but that could also
be progression from a cognitive point of view. Not everyone is 100% sure
what a relapse is, particularly those that are newly diagnosed that may have
experienced probably not many relapses, so my recommendation would be for anyone
who is unsure to get in contact with their MS team either through the GP
or directly if they have access.


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