A (2:48)

Let's have a listen now.

B (2:50)

With me, I have Ms. Nurse Mavis. Aye. And Ms. Pharmacist, Specialist pharmacist. Stavroula Parisi. Could you start by. I've already given you job titles but maybe just like a little quick introduction on who you are and what it is you do in your services.

C (3:10)

I'm Maeve Sire, I'm the lead nurse in Southampton and I also used to co chair the UK mssna which is the UK association of Ms. Nurses.

D (3:20)

I'm Stavrula, I'm the Ms. Specialist pharmacist in Southampton. So I work with Mavis and I've been a pharmacist, I don't remember how many years for. I've been an Ms. Specialist pharmacist for five years and a half and obviously I work as part of the team. I'm a dedicated clinical pharmacist in the team. So I support with everything, DMT prescribing, decision making, supporting the clinics.

B (3:46)

And today we're going to be talking about steroids. I'm going to start with the sort of most obvious question here. What are steroids?

D (3:54)

So it's a very broad term. I'll answer this question. So we're talking in ms, we're talking about corticosteroids which are synthetic analogs of natural hormones produced by the adrenal cortex. So our adrenal cortex produces cortisone, which is a very powerful anti inflammatory substance. So we have produced synthetic analogues and the one that we use in Ms. For relapses is methylprednisolone. So it has the equivalent actions in the body and it's almost five times more potent than the natural substance, the cortisol. So in a nutshell, this is what it is. It's an anti inflammatory medication that we use to control inflammation in Ms. And

B (4:48)

what do they actually do when you get given them, when you have an Ms. Relapse?

D (4:53)

So the purpose of giving steroids, of giving methylprednisolone, is to hasten the recovery, so to speed up the recovery from an Ms. Relapse. So that's the only thing that they do. So they do not protect from future relapses, they don't undo the damage that has been done. And the way that they stop the relapse is they use various modes of action to do this. So there are many things that they do. So they inhibit the production of pro Inflammatory cytokines. So these are molecules that help propagate the inflammation in the central nervous system. They induce the production of anti inflammatory cytokines, they reduce the migration of inflammatory cells into the central nervous system. So that stops the whole process of a relapse. They stabilize the mast cell membranes. So these are specific cells of the immune system that produce cytokines. So by stabilizing the membranes they do not produce this, they do not release these pro inflammatory molecules and they also they induce the death of lymphocytes, the apoptosis as we call it of lymphocytes, therefore reducing the proliferation of the cells. And overall they stabilize also the blood brain barrier. Because the blood brain barrier, during a relapse it opens so everything can go from the periphery, from the peripheral blood into the central nervous system. So steroids help stabilize the blood brain barrier, close it down again. So this whole process of relapse stops? Yes, their target is to stop, to speed up the recovery from a relapse.

B (6:53)

And you already mentioned what it helps with and what they can't do. Because I think sometimes people are a little bit confused on when they actually should be having steroids, what sort of treatment it is. So it won't help with other things like symptom management for instance.

C (7:13)

I think Sarula is right when she mentioned that it, the main goal of the steroids is to hasten or speed up the recovery process. And I think in practical terms for our patients that, you know, if they came in with optic neuritis, it helps improve the vision. If they come in with limb weakness or swallowing problems, it can help with speeding up the recovery of those symptoms. And she alluded to that. Unfortunately, steroids doesn't have an effect on, on the long term prognosis of the disease. It cannot undo the damage that's already done in the central nervous system. And in terms of reversing permanent damage, unfortunately steroids can't do that as well. And I think that's when, you know, disease modifying treatments come into the picture in terms of hopefully preventing future relapses.

B (8:09)

Should every relapse be treated with steroids?

C (8:12)

No, we do not treat every single relapse with steroids. You need to assess the patient. If it's a mild sensory relapse, most of the time that gets better on its own. We would advise the use of steroids if it's a relapse affecting the patient's activities of daily living, you know, if it's affecting their five sentence, five, five senses, especially their vision. So that's perhaps the time that we would advise steroids. But not all relapses are treated with steroids.

B (8:47)

And are there any cases when people would not be offered steroids for relapse

C (8:52)

if they have a medical problem? For example, if they are diabetic, you need to be a little bit more careful. It doesn't mean that they can't have it, it's just that there needs to be a system in place in terms of looking after their diabetes as well. If you have history of manic or depressive disorders, again, it doesn't mean they can't have it, but, you know, the primary care physician needs to be made aware of that. Sarila, what other conditions would you say would prevent us from prescribing steroids?

D (9:28)

So if someone has an uncontrolled heart condition, also because steroids can have side effects, cause hypertension, they can cause edema, and obviously the more acute thing is if someone has an infection. So because steroids can mask the symptoms of infection, this is why we normally rule out infection before we give steroids. But definitely if someone has a concurrent infection, we wouldn't give steroids.

B (9:59)

Can steroids make infection worse or you said that you do need to check for infections before you start on steroids.

D (10:06)

So they can mainly mask the symptoms of infection. So some there is underlying. So you will not get any fever, you won't. We won't be able to see the typical signs of an infection. And that means it is left untreated and that can lead to a more generalized, problematic infection. So this is why it is important to rule out infection before we give steroids for relapse. And at the same time, obviously, we do this before because infection can induce a pseudo relapse. So we really need to be certain that symptoms are not caused by an acute infection before we give them.

B (10:50)

And how soon after you start sort of showing symptoms should a steroid treatment ideally start?

C (10:57)

Ideally, we need to start steroid treatment within 10 to 14 days. So the earlier the better. But it doesn't mean that the patients can't access steroids later down the line if you know the relapses are still affecting them. But ideally the time frame is between 10 to 14 days.

B (11:14)

Let's move on to talk a little bit about different types of steroid treatment. What types are used to treat Ms. Relapses?

D (11:25)

So the first one that there was evidence was the intravenous methyl prednisolone. So there was a debate about whether prednisolone, oral prednisolone, was equally effective. So they went through trials, they compared the two and they found that oral treatment is non inferior, so almost exactly equivalent to the intravenous methylprednisolone. So the standard of care in the UK is intravenous methylprednisolone or oral. There is, I believe, in other parts of the world, particularly in America, they also use prednisolone, although the dose is really, really high and sometimes it's not practical for the patient to take so many tablets. All the evidence is around methylprednisolone, which, as I said, can be used either intravenously or orally. We would tend to use intravenous for more severe relapses and particularly when we also want to monitor other things, like Mavis mentioned earlier, if someone is diabetic, if they have some mental health condition and we want to monitor them, we would bring them into hospital to give them IV steroids or then oral steroids at home, prescribed usually by the GP or directly from the hospital. The doses around those. So the intravenous is 1 gram, 3 to 5 days, once a day, 3 to 5 days, where the oral is 500 milligrams for 5 days. So these are mainly the different types of steroids that we use.

B (13:08)

And apart from sort of the obvious that one is oral and the other one is iv, is there any other differences between, between the two in terms of the medications?

D (13:20)

So the iv, the methylprednisolone, acts nearly instantaneously, so this is maybe the reason that we want to treat someone with iv. Although the. The oral is not very different, so the peak action starts within one and a half to two hours. The absorption is also equal. So obviously with the IV drip, you know, with the drip in the vein, the IV methylbranisolone, the availability is 100%, whereas the oral, however, is also good, is around 8 to 9%. So in terms of efficacy, there's no much difference. They compared the two in terms of outcomes. You know, the reduction of symptoms after a month, after a period of time, and they found that there was no difference. So even in terms of the. The route of administration and the characteristics of the medications, there are not many differences. So it's mainly the patient and the type of relapse that they have that steers towards one route or the other.

B (14:28)

And if you are having an IV steroid infusion, how long does this take?

D (14:34)

So it takes about. It's an infusion over an hour, so it's one gram. This is diluted in normal saline and it is administered over an hour. So it's not a very long infusion. As I said, we normally admit those patients. So because we give them to people who have severe relapses or some comorbidities that need monitoring, we bring those patients in as inpatients. So alongside all the other care that they will receive any scans, you know, any physiotherapy, any support for their symptom management, they will have the infusion, which. About an hour.

B (15:17)

You've almost already spoken about what happens during this type of appointment, but is there anything else that a sort of steroid appointment would usually involve?

D (15:29)

I can't think of anything else apart from some medications that we will also prescribe. So, for example, we may prescribe a ppi, which is a medication for stomach protection. As I said, any other supportive treatment that may be required. Scans. Usually the consultant would like to the patient to have a scan, which would probably be with gadolinium, with contrast to see where inflammation is happening and then any other therapies, maybe. Is there anything else we do when patients come in?

C (16:06)

I think you mentioned earlier about

A (16:09)

when

C (16:09)

they're an inpatient and they have other investigations? I think nine out of 10, we would do the MRI if it's with gadolinium first, before we start IV steroids, so that the result of the MRI will be more reliable. So that's probably just one consideration when they're an inpatient. And actually even outpatients, if they started on oral steroids, will probably do the MRI ideally first. But in practice that might not be practical because the patient is struggling with their symptoms. So. But the use of steroids can affect MRI results, and I think sometimes patients perhaps know that.

B (16:53)

And how long can people sort of expect it before steroid starts working?

C (16:58)

So some people will notice a difference for the first few days and some may take longer. Or what I normally advise patients is if they have sensory symptoms, for example, numbness or optic neuritis, their vision is affected. Usually these symptoms get better within a few days. But if they have motor relapses, so obviously they're walking, their mobility, sometimes they have swallowing problems, those symptoms can take a bit longer to get better, sometimes weeks or months. So I think it's good to tell patients that this is not a quick fix. Giving steroids won't stop your symptoms altogether within a few days. So it's about managing expectations around that.

B (17:48)

Apart from what you just explained to me, there, are there any other signs that people can tell that steroids are helping?

C (17:55)

So they'll Find, for example, if they have optic neuritis, their visions are so slightly getting better. Again, it's on the Ms. Team to counsel patients that some symptoms then go back 100%, sometimes they get back 80%, 90%. So the recovery depends on what type of relapse they have experienced and obviously if they have underlying comorbidities as well. So most patients expect an improvement in their symptoms, perhaps not back to baseline, but 80 or 90% better within a few days.

B (18:33)

I realise that this is a. Is a tricky question because we're talking about relapses could be all sorts of different symptoms flaring up, can't it? But how long does recovery from a relapse usually take if you have steroids?

C (18:46)

So the steroids, as we discussed earlier, will speed up recovery, but the underlying inflammation is there. So relapses can take weeks and even months to, to get better. And I think to help reassure patients, we need to be honest in terms of the recovery time. So nothing is ever linear in recovery. So if a patient yet given steroids started treatment straight away, but they have underlying other medical problems or the stress levels are high and they have an infection, so all of these things will affect that recovery. So it's about honesty and communication with patients that not everyone's recovery, you know, not everyone's the same and everyone will recover depending on their age, comorbidities, you know, circumstances, you know, if they have help at hand, home. So the best thing to do when someone is having a relapse is to rest. And I think most people, you know, don't like hearing that because they just want something to make them feel better. But when you're having a relapse, the immune system is activated, you need to give it time to rest and calm down, in essence. So the recovery really is different for each patient.

B (20:21)

That makes sense. If steroids doesn't help, what, what other options are there?

C (20:27)

So if the steroids, you know, if patient finishes the course of steroids and if it's still not helpful, we would, you know, with the steroids we would advise neuro rehabilitation and, you know, obviously symptom management and starting DMTs or switching DMTs alongside that, and if the steroids still not helpful in severe cases, we would be discussing SNMDT to give plasma exchange or plex.

B (21:01)

If you're on DMTs, do you still. It's fine to keep on taking them while you're on steroids?

C (21:09)

Definitely.

D (21:10)

With DMTs is fine. So they've, if you look at the SPCs of the medications. They all say that you can use short courses of steroids for the management of relapses and it is essential that someone continues taking their DMT whilst on a relapse.

B (21:27)

So let's move over to things like safety and side effects and monitoring. We do see a lot of these questions popping up now and again. Let's start with what are the most common side effects of high doses of steroids?

D (21:42)

Common side effects, the first one, particularly if you have the oral one, is the GI irritation. So you can have some stomach issues. So that's why we would normally prescribe a ppi, a stomach acid reducer. With the steroids you can have some changes in your taste, so you can get some metallic taste, you can get headache and the mood disturbance that we have talked about before. So it can go either way. So you can have euphoria, so you can get high or you can get really, really low. Obviously there are rare reactions like psychosis. Usually these are associated with longer courses, higher doses with longer courses. So we only give 5 days in Ms. For the relapses. And then if someone has background comorbidities like diabetes, it can cause hyperglycemia, so high blood glucose. So it is important that this is monitored. We let the patient know if they have a heart condition. Again, it can cause hypertension, they can cause palpitations, and these things need to be monitored and managed during the days of treatment. It can cause some increased appetite so someone can feel the need to eat more. These are the more common ones with this duration of steroids because in the longer term steroids have other side effects like it can cause osteoporosis or problems with the bone density. Obviously they can cause new diabetes. So if someone doesn't have diabetes, but that's more for long term courses. And this is one of the reasons that we don't offer steroids also too often and we don't offer steroids for every single relapse. So a lot of the times patients ask, oh, why can I have that? Or what can I not have? Like a lower dose, you know, a longer course with a lower dose. So steroids are not safe, so they, their benefits need to be justified to outweigh the risks because they do have a lot of side effects in the long term. So these are the most common ones when it comes to short courses. Repeated courses may cause other things like as I said, the osteoporosis and mood disturbances that can be difficult to manage

B (24:17)

with the side effects are they generally temporary Side effects or are there more or is there side effects that might stay with you after you stop the steroids?

D (24:27)

So they usually they're short lived because it's a short course. They may linger a few days, for a few days after you stop the course because obviously methylprednisolone is not very long acting but it's still some side effects may carry on after taking it. So they're generally short lived. As I said earlier, that's one of the reasons we don't give repeated steroids or we don't do any tapers. So that's another point. So we don't usually with steroids we would in other courses, higher doses which are taken for long term, you need to slowly decrease the dose before you stop them. But with this five day course we don't do this, it's not necessary. Therefore any other side effects like the long term ones with the bone issues or the hyperglycemia, they don't, they don't develop, we don't really see them developing after a short course.

B (25:28)

Are there any red flags that people should look out for if they are on steroids?

D (25:33)

One would be symptoms like the heart palpitations, any confusion, any, you know, altered mental status if someone is really high or really, really low, any hallucinations, anything that suggests psychosis, symptoms like feeling sweaty, anything that might allude to very high blood glucose. These are the ones. Mavis. Anything else?

C (26:01)

I think long term, I think you mentioned earlier about bone density. We still have some patients, you know, prior to the advent of DMTs and they've just been treated because there is no treatment for Ms. The gps and the Ms. Team, you know, just treated them with steroids, you know, either two or three times a year. And I think we still have that mindset that oh, I'll just have some steroids and I'll be fine. And 20, 30 is down the line especially for women. We lose our bone density and frequent use of steroids. So you know, Savula mentioned that the steroids that we give are high dose steroids. If you do that two, three, two to three times a year, eventually 20 years down the line it will catch up with your bone density and that's creating a new problem in terms of fractures. You know, when a patient falls over, if they have walking problems, they'll fracture their hip and then the recovery will be a lot longer. So it's not just the immediate side effects and red flags of steroids but also the long term. And I think that's where the difficult Conversation sometimes happens with patients because they just want the steroids. And I think it's our job in the Ms. Team to counsel patients that actually you've had a high dose steroids already this year. Maybe we'll treat this conservatively for now and then see how you go.

A (27:33)

But.

C (27:34)

And I guess what I'm trying to say is we should only limit the use of steroids. Now, again, not everything is black and white. It depends on the patient in front of you. But we need to counsel people about osteoporosis and bone density. I think for me that is a bigger red flag because our patients are getting older, we are all getting older and also we are living longer. So it's about quality of life. If you have brittle bones in your 60s and 70s, that is something to consider.

B (28:08)

That is one of those things that is talked about an awful lot now. Bone density and osteoporosis, which is great that it's being talked about because it certainly seems to come up a lot, especially when you're a woman of a certain age, I think certainly comes up in my social media feel. And how would somebody be monitored while they're on steroids?

D (28:30)

When it comes to monitoring, obviously there is the counselling before we prescribe them. So if you have a patient who is diabetic, you need to let them know that this is. It may cause high blood glucose. So you would advise for an increased checking of their blood glucose and some adjustment if they are, for example, on insulin, for some adjustment in the dose of the insulin. Obviously the main thing is to monitor how they're doing in terms of effectiveness of the steroids in managing the relapse if the symptoms have subsided and if it's helping, obviously all of that, if you have someone who is having it at home orally, all of that is remote. So we're relying on the initial counselling before they have the steroids and then follow ups, you know, during the days of treatment and after they have completed the course.

B (29:27)

Mavis, did you have anything to add to that one?

C (29:29)

It depends on your service. So some services have a dedicated relapse clinic. Some people call it rapid access clinic, escalation clinic. So if they are on an existing DMT and they're having a relapse, so you need to escalate treatment. So the follow up can involve additional clinic appointments and also pre screening if you're escalating treatment. So the most important thing is to be keeping in touch with the patient and how they can escalate to you as well. If they're not responding to treatment and they have further questions.

B (30:07)

I guess what we could mention here is that obviously we're talking with people from the same service here and throughout the uk, things might be slightly variations in what goes on.

C (30:19)

Yeah, definitely. And, you know, across the uk, we all have different services and different access to treatments and I think we need to appreciate that, you know, especially if you have a patient contacting the Ms. Trust about, you know, when can I have steroids? Do I have it at home? Do I have it in hospital? So find out from the service what is available. And I think for the Ms. Team is about transparency as well. And what's available for your patients to. Some services can do IV steroids as a day case in Southampton, we wouldn't do that. So we treat steroids in the community, so we give them oral steroids. And, you know, Sabrina said earlier, if their relapse are affecting their ability to care for themselves and for others, we might have to admit them to hospital.

B (31:16)

My last set of questions are some sort of practical questions that we see pop up a lot here at the Ms. Trust. So here's a question that I think I've seen specifically up on Facebook. What would somebody do if they get a headache or feel unwell during the treatment?

C (31:35)

So if they have a headache, because it can sometimes happen, and also a metallic taste in their mouth, so steroids can do that. We would ask patients to just take paracetamol every, you know, six hours, and if that is not enough or suboptimal in terms of the headache, they can add ibuprofen if they are not allergic or there are no other comorbidities that will stop them from taking it and make sure that they're well hydrated. I think that is another famous topic at the moment about hydration. You know, we all think we drink enough, but actually, if you tally everything that you drink in a day perhaps is not enough. And I think limit caffeine intake during steroid treatment, because sometimes, you know, if you drink too much caffeine, it can give you that palpitation as well. So keeping hydrated, resting and taking pain relief as necessary and as needed.

B (32:36)

Do some people feel a temporary boost after steroids? Is something that we've seen people talk about a bit, yes.

C (32:42)

And I think that's why they like having steroids, is because they. They can have that boost. And they, you know, some patients have said to me, oh, I've managed to clean the whole house today because of the steroids. And I sometimes say to Them, okay, you need to pace yourself because it can also bring about a crash at the end. So it's important to counsel patients that yes, you have this temporary boost, but also not to tire yourself too much, that after the steroids you'll have that crash down feeling, so to speak.

B (33:17)

Can steroids be taken during pregnancy or breastfeeding?

D (33:21)

They are safe to be taken during breastfeeding. So the concentration in the breast milk is minimal. So it's safe. You don't expect any problems in the baby. When it comes to pregnancy, it's a little bit more ambiguous when it comes to data. There has been evidence of some congenital malformations in animals, but there's nothing to indicate that they can cause the same in humans. It's the usual unpleasant expression of the benefit outweighs the risk. So it's an individualized choice about using them in pregnancy. They are recommended. The consensus is that they are recommended. Methylprednisol can be used during pregnancy for the management of relapses because obviously, if you get to the point of needing of considering relapses, that means that the relapse is quite severe, quite significant, and on balance, giving them will be better for the health of the mother and of the foetus and of the child. So, yeah, it is recommended to be given during pregnancy and the same applies to breastfeeding.

B (34:39)

Those were my questions that I had. I don't know if there's anything that you, any of you would like to, to add.

C (34:46)

Just want to say thank you, Helena, to, to yourself and the Ms. Trust for, you know, dedicating a podcast about steroids. It's something definitely that we get asked a lot about and, you know, sometimes there's a lot of anxiety in there. So just, you know, in terms of, for people with ms, just ask your Ms. Team, you know, what is available to me, how do I access, you know, the steroids and how do I communicate with the Ms. Team? And for the Ms. Team, it's about being honest with your patients and just, you know, continue communicating and reassuring because it can be quite a, a really stressful time for people with Ms. When they're having a relapse.

D (35:38)

So, yeah, thank you very much for raising this issue because obviously in today's era of high efficacy, dmts is not very often anymore as, at least as often as it was before that we use steroids. I would say that they, they are good medications, very useful medications, but at the same time that applies to when they're indicated. So if there is an indication to have steroids, then we will give them because as we discussed, they do have side effects. They're not an easy solution and it's not a cure for Ms. So patients should get advice from their Ms. Team because we are the specialists in advising when they are indicated and when they should be used. So, yeah, overall, thank you for raising this issue.

B (36:36)

Again, thank you both so much. This has been really, really interesting. I've learned a lot and these are so many questions that although over the years that I worked at the Ms. Trust, you do see pop up a lot because there is a lot of confusion about this. So I really hope that this has helped to clarify some things for our listeners.

D (36:54)

Thank you.

C (36:54)

Thank you.

E (36:55)

Hi, I'm Ellen and I'm the individual giving manager here at the Ms. Trust. Ms. Is something that's very close to my heart. A family member lives with a condition, so I've seen just how much support, information and guidance can make a real difference. That's why being part of an organisation helping people with Ms. Every day means so much to me. Many people need guidance and want to know where to turn for reliable information. And that's where the Ms. Trust comes in. From the very start, we provide clear, evidence based information, practical support and reassurance for people with ms, their families and the health professionals supporting them. One of the most powerful ways to support us is through a regular monthly gift. Even a small monthly donation can help us plan ahead and make sure support is there whenever it's needed. Just a few pounds a month can help keep our Ms. Helpline running and ensure our trusted information stays up to date so no one has to face Ms. Alone. If regular giving isn't right for you, a one off donation can also make a real difference. If today's episode has resonated with you and you'd like to support our work, you can donate at mstrust. Or you can call 01462-533-6007. Thank you for listening and for supporting people living with Ms. Our health information

A (38:28)

team has recently reviewed and updated our webpage on steroids for Ms. Relapses. It touches on many of the topics discussed by Mavis and Stavrula and has a bit more detail on how the steroids are taken, potential side effects and when you should be offered them and when you shouldn't. Go to mstrust.org.uk steroids if you want to read more.

B (38:50)

Overall, I really think this episode was great to do. I've learned a lot about steroids because I've personally never had steroids for a relapse. I've only been off them once and that was back when I was breastfeeding. This was many years ago and the nurses at that time were not keen to give me steroids when they found out. But I learned today that that's actually not the official guidelines anymore, so I thought that was quite interesting. I think also the interview highlighted the importance of talking to your Ms. Team about the risks and benefits of steroids to work out what's right for you personally, as not all relapses will need treatment with steroids.

A (39:31)

Definitely. And if you've got a question about ms, that could be things that we have discussed today like steroids and relapses or anything else about ms, remember that our free helpline is here for you. You can call us on 0800-323-839 Monday to Friday, 10am to 4pm, that's excluding bank holidays. If it's out of hours, just leave us a message and we'll get back to you.

B (39:55)

And you can also drop them an email if you rather@helplinestrust.org you can follow us on Facebook, YouTube, TikTok and Instagram for updates, videos and other useful content. And don't forget that you can find this podcast on Spotify, Apple Podcasts, Amazon Music and YouTube Music and also the video version of this is up on YouTube as well. Please get in touch with us and let us know what you thought of the podcast. We'd love to hear from you and if you enjoyed this episode. So please leave us a review and share it with anyone who might benefit from it.

A (40:33)

Thanks for listening guys. Until next time. Take care and we'll see you next month.

C (40:38)

Bye bye.