Medications in Multiple Sclerosis

MS Plus acknowledges the traditional custodians of the land this podcast is recorded on, the Wurundjeri people of the Kulin Nation. We pay our respects to their Elders past and present.

Andrea: Welcome to the MS Education podcast series. Thank you for joining me. I'm Andrea Salmon, and in each episode we are going to be joined by an expert to discuss strategies for living well with multiple sclerosis.

Today we're talking with one of our MS nurse advisors about medications that are available for people who have multiple sclerosis. My guest today is Jane Gilliland. Jane's a registered nurse with six years’ experience in disability and aged care, progressive neurological conditions and primary health care. Jane is also an internationally certified MS nurse and works as an MS nurse advisor here at MS.

Welcome Jane, it's great to have you.

Jane: Thank you, Andrea, it's great to be here today.

Andrea: So, my first question to you is, how is medication used to treat multiple sclerosis?

Jane: We use medication in a few ways. The primary role of medication in treating MS is actually in a preventative capacity so, we use what we call disease modifying therapies or disease modifying drugs, and we use those to prevent further damage from occurring, and so these medications work in different ways, but what they do is they stop, somehow, more damage occurring to the myelin, which is the insulation on the outside of a nerve, and by stopping more attacks on the myelin in the central nervous system then we're preventing more damage from happening.

So, this medication isn't used to make you feel better day to day or to treat the symptoms, it's really to prevent and slow down the progression of the MS. So that's the main role of medication in people living with MS.

Andrea: Jane when I first started at MS there were four medications, and they were all delivered by injections. How has that landscape changed in the past 10 years?

Jane: It's changed dramatically in the last 10 years and even in the last 5 years as well. That's exactly right, we did start off with injectable medications in the mid-1990s. We had the interferons and then the Copaxone, and then we got the infusion options, we had Tysabri and had some oral based medications come in the mix, and now that we're in 2020, in Australia we now have 12 medications that are both approved by the TGA, which means they can be sold in Australia, and they are also PBS listed, which means that they are subsidised by the government, and we also have more of these medications on the way.

The other major change is that for a long time we've only had medications for relapsing remitting MS, which is the most common type of MS. We're now seeing medications that can treat secondary progressive MS and also primary progressive MS. So, we're hoping that they will become available and on the PBS so that they're widely available to our community as well.

Andrea: And are they all still injection based?

Jane: No, so we've got injections, oral medications, so tablets or capsules and also infusions as well.

Andrea: Wow, so that must be really hard for someone to decide what medication to take. How might they go about that?

Jane: With difficulty. It is a difficult decision and, because MS is a chronic condition, these medications are long term style medications, so that also can be a little bit tricky as well. It's common for a neurologist to provide a number of medications to choose from, which might be surprising, and it might not be common in other health areas that a doctor would say, this is the condition you have, here's five drugs to choose from. But in MS, we actually believe this is beneficial, to give a person the choice because all the medications that are put forward by the doctor are thought to be good options, and it actually allows the person to make a really individual choice, because they do differ. So, some of the things that a person with MS might consider when they're given those options could be things like, how active has their MS been, if they have any other medical conditions that might either, interact with this medication, or potentially benefit from. An example might be Crohn's disease. There's actually a medication we can use for Crohn's disease and MS, kind of at the same time.

Things could be like family planning. MS is very common in women of childbearing age, 20 years and older. So, if you're thinking of wanting to start a family in the next couple of years, then that's something that we consider as well.

And also, other lifestyle considerations, such as employment. So, if somebody is, say, a long haul truck driver, it might be quite difficult to, be on an injectable drug that requires refrigeration and to pick up from the pharmacy quite often. Or if you travel a lot for work, it might be difficult to have a monthly infusion because you might be overseas quite often. So that's an option there as well to consider.

And then the form of medication. So, if you're needle phobic, it's not going to work if you're on an injectable drug, or if you're not someone who's going to be able to remember taking a tablet twice a day. Also, things like, how effective the medication is, and how you feel about the side effects.

Andrea: What would be some of the side effects that people might expect to experience?

Jane: Absolutely. All medications have side effects, and everyone responds differently to different medications, and because of that you can experience side effects differently. In general, a high majority of people tolerate these medications quite well, and even though there are listed side effects, it's important to know it's not common to experience all of them. The side effects do vary between each medication but, in general, there can be side effects which are quite common, that they happen, but they're not so concerning, and there can be some that are moderately common, I suppose, and might be a little bit more intrusive on your life.

And there are some side effects of some medications which are extremely rare, but also can be quite concerning. So, it's important to have a look at those, and have a talk to the doctor about it whilst also considering that not going on treatment may also have a potential negative effect on your health.

So, there may not be an option for you to choose that is actually risk free, which further complicates the decision.

Andrea: Absolutely, and you mentioned the effectiveness of the medications, particularly if you've got a lot of active disease happening. What are some of the things to consider with that?

Jane: The range we have does vary out of these 12 medications, and they've not been directly compared against each other in, what we would call like a head to head clinical trial. So, that can make it a bit difficult when we're trying to say, well, which one is more effective than the other, kind of putting them on a hierarchy.

However, there is a set of guidelines that have been developed by the Association of British Neurologists and they've categorised the medication into three categories where we have, moderately effective drugs, and then we have what they call, more effective, in the middle, and then that kind of highly effective group at the top.

And so that grouping into three categories may be something that is helpful in terms of understanding how effective the therapies are, and also just understanding that the goal of the treatment is to prevent further relapses and lesions, as well as the silently active parts of MS, which can cause further problems down the track.

So, there is some information as well that would tell us these medications are more effective earlier in the course of MS, which is a more inflammatory stage as well.

Andrea: And I guess a person's neurologist is going to help guide them with that, but where else can they get support to just figure out what might be the best option?

Jane: Yes, the neurologist will definitely guide this, but it can be hard sometimes to get all those questions answered in such a quick appointment. So it is very important to know where to get more support, and it's quite difficult in this sense because, not a lot of people know much about MS, and these therapies aren't very common, and even someone like your local GP or your trusted pharmacist, they might not come across these treatments commonly, if not ever, so that can be quite tough.

Calling into MS and requesting to have a chat with one of the MS nurse advisors, such as myself, can be a really good option because it allows the time to work through all of this and understand what the terms mean, what's being discussed with you, what the medications are, how they might work, and help the person identify what might be the most appropriate medication for them.

Sometimes a way that I assist people in helping them figure this out is to help them consider what the desired outcome may be. So, why are you going on medication at all? What outcome are you looking for? And that can sometimes help us to work backwards.

Another approach I sometimes use with people is to start by crossing off the least appropriate or attractive option, because there's often not an option that looks perfect, and that's the best fit. But sometimes you can say, well, there is a worse option, like, that's the absolute worst, I really don't think that's good at all. And so sometimes that can help as well, but very much so the neurologist is going to be the best person to talk that through with you.

You also may have an MS nurse at a clinic. So, if you do go to a public MS clinic as well, then you're very likely to have access to at least one MS nurse where you can get further support as well.

Andrea: Oh, that's great. Jane, you mentioned that the medications for MS are not necessarily going to make people feel better. Are there other medications that can help particular symptoms?

Jane: Yes, and we call those symptom management treatments, I suppose, and symptom management is really how we treat and address those things that bother you day to day. Those symptoms that you have that are stopping you from sleeping or enjoying your daily life. It could be things like pain, or it could be cramping or spasms for example, or it could be something like fatigue, or changes with your continence. It could be any of the symptoms.

Depending on the MS symptom, sometimes they respond quite well to medical treatments, and other times medicine is primarily not as helpful. Something like fatigue doesn't really respond that well to medication, but when we look at other symptoms, say like spasm or spasticity, it responds very well to medication.

So the medications that we use not specialised to MS so, if someone had, say, spasticity related to MS, they're very likely to be on the same medication as someone who has spasticity maybe from a bad injury caused by a car accident or a spinal injury, for example, so they're often the same medications that are used to treat these symptoms in general.

These medications can often be accessed through the GP as well, so you don't necessarily have to wait for your neurologist appointment to look at addressing some of your symptoms. The GP can help you with that, as can we with a chat over the phone as well.

Andrea: Great, and would any of those symptom managing treatments have an impact on your MS medication?

Jane: That's a good question. There is always a consideration about what we call contraindications. That's the technical term for what happens if you put two drugs together at the same time. There can be instances where that would be the case. One of the MS drugs, you need to be quite mindful about timing of that, the way that it's dosed in quite a specific way.

There would be very few medications where it would be the case that we would have to be careful about how they're given. But again, that would be something that would be addressed by the person prescribing the treatment, and that's why it's always good to check with a doctor or at least a pharmacist.

So, if you're getting a medication and you think it's a supplement, for example, so that must mean it's safe to take because I don't need a prescription for it, it's really important to check with the pharmacist and say, look, this is the list of medications I'm already on. Can you check that these are safe, and they won't have a negative effect, because sometimes when medications are contraindicated, which means they can't be taken at the same time, it means that when they mix inside the body it could render one of the drugs ineffective or it could potentially have some kind of negative effect where it makes something new and, that's no good as well.

So always good to check, but we would assume that the doctor prescribing the medication would also be checking those as well.

Andrea: That's great advice. Thanks, Jane.

Jane, is there something that you would want to say to the people listening in today, as summary around the benefits or the impacts of medication in MS? Some sort of take-home message that you think is important for us all to be aware of.

Jane: Yes, I think sometimes we understand that we use medication to fix a problem, and medication is what we take when we're sick, and it's going to make us better. And often, for people that are diagnosed with MS, they may not feel unwell at all. They may have a couple of symptoms or, hardly any for some people, and then they're faced with the idea that they’re going to take a medication that works in quite a significant way, that could make you feel sick because of the side effects, and it's quite difficult for some people to think about that.

And it is a personal choice. It's not the right choice for everybody to go on medication and you shouldn't feel pressured to, but it's important to know that we use this medication in a preventative way. So, we don't start this medication because we think you are sick. This medication is used in a preventative way to prevent more damage from happening.

It's about keeping you where you are, hopefully getting no evidence of progression or disease activity in the future, but it's about maintaining where we are as long as possible, not so much fixing a problem that's already happened.

Andrea: Which is a great goal for everyone with MS.

What are you seeing on the horizon? What's coming in the research kind of space?

Jane: Yes, well, we are seeing very closely on the horizon, as I said, medications for primary progressive MS. One of them is already approved by the TGA, but is not yet PBS listed, which means it's very, very expensive, and we're also looking at a secondary progressive MS medication as well that may be here quite soon.

A bit further away is a clinical trial on remyelination which means that the myelin or the insulation that's taken away from the nerve could actually be repaired and put back on. This clinical trial that has been done in animal models has shown promising results, but of course it will have to be studied in humans and investigated through the appropriate channels to see if it has the same effect in people with MS.

But if that does turn out to be the case, I think we will all rejoice and be so excited that we have a treatment that can actually fix the damage that's already occurred, and it would be wonderful to see a time where we can be on a preventative and a fixer at the same time.

Andrea: Absolutely, that's great. Yes, lots of promising things in the future I'm anticipating.

Thanks Jane, it's been great chatting with you today and hearing about the medications and the things that people should keep in mind when they're working out what medication to go on if they're diagnosed with MS, and maybe we just reinforce it if people have further questions. Where can they get some more information from?

Jane: Yes, it's very important to think about where you get your information from. It's very unfortunate that there is a lot of inaccurate and harmful information out there, especially on the internet, so it's very good to be mindful about where you might be looking things up.

Feel free to contact us at MS, and you can certainly request information on medication, and you may like to have a chat with either myself or my colleague, Bridie, and we can make an appointment so that you've got lots of time and are feeling good to have a long chat, but we can also have quick conversations whenever you need.

So often it takes quite a few phone calls and planting seeds and, what I call mentally marinating on ideas before you might be able to work through what's going on. So, that's okay, we're here for you when you take your time.

Andrea: That's great, Jane. Thank you so much for your time today. We'll have to get you along in another podcast for another update.

Thanks very much.

Jane: Thanks, Andrea.

Andrea: For more information on anything that we have covered today, please get in touch with MS Connect on free call 1800 042 138 or email [email protected] and don't forget to find the MS Podcasts on your favourite podcast player such as Apple, Google Play, Spotify, Overcast or you can access the podcast directly from our website ms.org.au.