"I'm having a relapse, what now?"

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.

Nicola: A very warm welcome to episode 3 in our relapse series of podcasts. So, in this episode, we're looking at I'm having a relapse, what now? I'm Nicola Graham and I'm joined today by Jodi Haartsen. Jodi's an MS nurse and she's an executive manager here at MSL. So, if you're keen to know what happens next in that relapse journey when you're having a relapse, please stay tuned and Jodi will give you all that useful information.

Welcome Jodi.

Jodi: Thanks Nicola.

Nicola: And welcome everyone to episode 3 of our relapse series. So, I'm going to kick straight off with the question I know everyone will be interested in. Once a relapse is diagnosed, what's going to happen next?

Jodi: Well, what happens next does depend a little bit on where you are, who your medical team around you, even across all of Australia, there's different ways of doing things slightly.

But for most people, after they know that they're having a relapse, the treatment plan will be decided with the MS nurse and the neurologist. And there's a number of different options that might happen to people once they've had a relapse. So, when you're having a relapse, that means that there's extra inflammation going on in your brain and your spine.

So, the best way to treat that is to actually reduce that. And a really potent way of doing that is through a medication called steroids. And steroids are a pretty strong anti-inflammatory agent and there's a number of ways that you can have that for treating a relapse and one of them is with the course of oral steroids The other one is in a tablet form the other one is in a liquid form But probably the most common thing is for people to have it as an intravenous. In the intravenous form and that's usually done over three days occasionally five days

Nicola: Okay. All right. So do all Relapses need treatment Jodi.

Jodi: No, I think previous episodes of ‘What is it’? You've covered that it can be really complicated trying to get a diagnosis of whether it's a relapse or not. And so sometimes there is an option of waiting and seeing, and people can see whether it turns the corner and their symptoms improve, or whether it gets worse.

So not all relapses need to be treated, no.

Nicola: Okay. And you've spoken to me in the past about how important it is for people to know about the side effects of steroids. Can you, can you tell us a little about what people have got to look forward to there.

Jodi: So, you know, the most common time that people have steroids is when they're newly diagnosed and when they've had their first relapse and don't really know about the side effects.

But some of the more common side effects of steroids are a really awful taste in your mouth and they can also give you indigestion, facial flushing, weight gain funny skin stuff, a bit zitty in some cases. Other sort of more there's very few unsafe side effects. Most of them are unpleasant.

Insomnia is a huge one. And everyone experiences these quite differently as well too. So, I'm giving you the list of, you know, more commonly ones, but not everybody has them, steroids can heighten whatever emotion you're experiencing and sometimes that can mean that you're more teary, you're more happy. Some people call it the Roid Rage, that people can feel really amped up as well on the steroids. Not sort of the Arnold Schwarzenegger amped up, but just this heightened emotional sense.

Nicola: Like an agitation?

Jodi: Yeah, it can be, or it can even be just really teary. Like, you know, grown men crying, saying I just don't know what.

People just unsure, uncertain of what they're so it's the experiences, you know, why they're feeling how they're feeling.

Nicola: And how long is a person typically on steroids for if they're having a relapse?

Jodi: If for MS you're really just on it for the three days, if you're having the intravenous version.

The side effects of the steroids can make you feel a bit like you've been really hit by a truck. That sort of common saying of, fatigue, you know, aching your bones, sort of feeling really flat and exhausted. One year for some people haven't slept for three days. And that does pass, which is really important to know, you know, like it does turn the corner.

It's not part of the relapse. It can really just be part of the steroids.

Nicola: Okay. Good to know. If you are admitted to hospital, how long are you likely to stay and what sort of percentage of people do end up in hospital?

Jodi: If it's your first relapse, you're more likely to end up in hospital because there's often other tests to do to get that diagnosis, to be able to work out what it is, is it definitely MS.

So, most of the time people who are newly diagnosed, or it's more common that people would be admitted Now that, the course of steroids is the three days, but that might mean that they stay in hospital for four or five days just to get the rest of those tests done. But for people who it's not their first relapse, most commonly the treatment's given either in a day infusion centre or in hospital in the home as well too.

It's a very safe medication, and so we now know that it's safe to be able to be given at home, so people can have it there.

Nicola: And when you're having a steroid infusion, how long does that last for?

Jodi: The infusion itself it's a little bit variable, but most of the time it's around about an hour and a half to three hours.

Nicola: Okay, so it's not too long?

Jodi: No, it's not too long.

Nicola: Although I'm sure it feels like a long time when they're done.

Jodi: It can be a long, it can be a long hour and a half, that's for sure.

Nicola: And, when a person's having a relapse, Jodi, does that automatically mean that they have additional and new lesions? Or not necessarily?

Jodi: No, not necessarily. You can have a relapse without a new lesion. That is for sure. They'll often wait to do an MRI after having the steroids. That I s because the steroids themselves can change the picture of the MRI. So sometimes they'll wait a few weeks, even up to a month before they'll do an MRI to check if there's any new lesions there.

If they're really concerned, they will and some to do an MRI. And sometimes it's better to actually do it before the steroid treatment so that you don't have that that picture change. And sometimes they give people dye to be able to see if the that attaches, that dye attaches to inflammatory cells and really gives a clear picture of if there's new lesions.

Nicola: Okay.

Jodi: But just to go back to that message, yes, not all relapses are seen on MRI.

Nicola: Okay. And if you're having a relapse, does that mean that your disease modifying therapy isn't working or needs to be reviewed or changed?

Jodi: It definitely means that it needs to be reviewed. If you are having relapses, then it depends a bit on the severity of the relapse of course and whether there was new lesions but it definitely needs a review.

Whether it's changed or not depends on a lot of different factors and that's tends to be a long and complicated decision and discussion with the medical team and the neurologist to be able to do that. But it doesn't necessarily mean that your treatment needs to be changed, but it definitely needs a review.

Nicola: Okay. And burning question I think for anybody who's experiencing relapses, how long is this going to last?

Jodi: It's really variable how long the symptoms last. And it does depend a little bit on what area of the brain and spine has been impacted. So sometimes the degree of inflammation that's gone on and where the activity has been in the brain and spine will mean that the consequence of the symptoms can last a long time.

A good example is a is a lesion in your neck that can cause numbness and tingling in your fingers and that one is really hard to sort of treat it does tend to stick around and so it does it depend a little bit on where the impact has been and the inflammation in the brain and spine. But for the majority of people a relapse will last a short time a couple weeks and then they will start to improve slowly over time

Nicola: And just to finish off, Jodi, what top tips would you give our listeners around when they're going through a relapse how to deal with it in the most resilient way?

What, what would you advise?

Jodi: I think if you're first diagnosed or even if you're having another relapse, it's an incredibly stressful time. You, been through that process of not knowing whether it is or isn't, and that's really hard as well too. And it creates all this uncertainty and stress.

So, I guess my tips are around how to make, how to reduce the other aspects around it that can be quite stressful. One of them is understanding what's expected from the side effects of the treatment. As I said before, they've got lots of side effects that you probably wouldn't have associated it and then if they come at you from the side, you think is this part of my relapse?

I don't know what's going on here, so understanding the side effects of the treatment and telling others what they might expect as well is really one of my tips. The other one is to really ask someone about what's going to happen to you because often even things like knowing where you're going to park, how long is it going to take, if hospital home is going to come to your house? What do they need to know?

So, MS clinics associated with nurses can be really helpful in getting, just understanding the logistics of where you're going to need to be, what you're going to need to be required. It just lessens that anxiety around that.

My other tips would be to, to know who to call when there's something to go wrong.

And that's really hard because I know for lots of people, they don't have anyone to call. But if you can try and work out who you're going to call when something goes wrong, that can be really helpful. And the other thing is to, if possible, it's not always possible but, if possible, have someone come with you to have the treatment.

So that just sort of lessens that sort of, especially if you need something extra or someone throws something at you and you don't know what to do. And also, while you're at home too, you know, to be, it's particularly if it's the first time you've had steroids, you don't know how you're going to react and everyone reacts really differently.

And so, I think having someone around you and being with you is really, is really important. Simple tips are to prepare your veins on the way there if you're going to have the intravenous one, have enough fluids. I often used to encourage people to bring a hot pack and if they knew where their good veins were, which a lot of people with MS do, trust me to get that area nice and warm before they went into the infusion centre just to feel like, also get you a sense of control of what you're doing.

But you know, having enough fluids the day before can be quite useful there. And the people who had lots of steroids, my patients would tell me, tell me things about how they felt to get rid of the horrible taste. And their top tips were liquorice, bananas, and fruit tingles, although I'm sure there's very many more of those as well too.

Nicola: So not chocolate. Not chocolate.

Jodi: No, no, no, no. Bananas seem to be a big one. And liquorice and, and I think sometimes you just need fruit tingles anyway.

Nicola: Okay. All right. Well, that's all the questions I had, Jodi. Thank you for those top tips. I think they're really, really invaluable for people, and I hope for our listeners that are having a relapse, that they're much clearer about the steroids.

It's about what might happen to them. So, thanks for your help on that, Jodi.

Jodi: No worries. And they're always welcome to call MS Connect. Those nurses know a lot about the steroids as well.

Nicola: They absolutely can. And the number is given at the end of this podcast. So, thanks Jodi.

I hope you found the podcast useful. And please know that if you'd like to access any services, get some more advice, seek some support, then please call our MS Connect. Number 1800 042 138. Thanks for your time.