Flare management in rheumatology: Advice line conversations

Hosted by Julie Begum, this podcast explores an MDT conversation on ways to support people experiencing a flare. The conversation covers:

• How a flare, one of the commonest reasons for contacting the advice line, can be managed
• Self-management advice that patients in a flare can be given during a telephone consultation

Contributors include Ailsa Bosworth MBE, Jade Skeates and Prof Samantha Hider and this podcast on Flare Management forms part of the wider BSR Nurse Advice Line learning resources.  

Thanks for listening to Talking Rheumatology! Join the conversation on X using #TalkingRheum or tweet us @RheumatologyUK.

BSR is the UK's leading specialist medical society for rheumatology and MSK health professionals. To discover how we can support you in delivering the best care for your patients, visit our website.

Transcript

0:01
 You're listening to the Talking Rheumatology Spotlight podcast brought to you by the British Society for Rheumatology.

 0:15
 So welcome to this podcast on how to support people with inflammatory arthritis to manage a flare, my name is Julie Begum.

 0:22
 I'm the lead nurse for Rheumatology at the Luton and Dunstable Hospital and I'll be the chair for the podcast.

 0:27
We're focusing on this subject as coping with a flare is one of the commonest reasons when a patient may contact the advice line.

 0:35
 We realise that many members of the MDT are involved in the delivery of care when a person has a flare, so I'm delighted today to be joined by a few people that might be involved in that.

 0:44
 So we've got with us today our consultant rheumatologist.

 0:48
 Hello, I'm Sam Hider.

 0:49
 I'm a consultant rheumatologist at Haywood Hospital, Midlands Partnership Foundation Trust and a professor for rheumatology at Keele University, and it's lovely to join you, Julie.

 0:58
 Thank you so much.

 0:59
 We've also got our physiotherapist colleague with us today.

 1:02
 Hello, my name is Jade Skeates, I'm a clinical and team lead physiotherapist at the Royal United Hospitals in Bath.

 1:08
 And thank you for letting me join you today, Julie.

 1:11
 Thanks for being here, Jade.

 1:13
 And we're really delighted to be also joined by a patient to give their perspective.

 1:19
 Hi Julie, Thanks for inviting me on this podcast.

 1:22
 I'm Ailsa Bosworth, founder and national patient champion for the National Rheumatoid Arthritis Society.

 1:28
 And I've lived with seronegative rheumatoid arthritis for 46 years.

 1:33
 A very famous patient that's joined us today.

 1:36
 So thank you so much for your time, Ailsa.

 1:38
 And we as a team, I'm sure everybody listening in today will know that there are other people also involved in the care of a patient.

 1:45
 And that may be beyond the professionals that are here today.

 1:48
 So we know that pharmacists can be involved in that care as well as our occupational therapists and our podiatrists as well.

 1:55
 So lots of people that can coordinate the care of a patient that's having a flare.

 1:59
 So they're not represented here today in the podcast, but very important members of the team that you may have to lean on as well.

 2:05
 And so I'm going to come to you first, Ailsa, if I may.

 2:08
 And I was just wondering if you may be able to take us through the patient perspective.

 2:12
 Can you describe to us what a flare is and how that may impact a patient?

 2:17
 Sure.

 2:19
 Well, the, the occurrence and severity of flares obviously can be very variable between individuals, both in severity and in, in timing of those flares.

 2:31
 It could be a single or multiple joint that you experience a worsening of symptoms, typically swelling, pain, increased stiffness and perhaps feeling more fatigued than usual.

 2:41
 But it can also be a whole-body flare where all your joints are affected, and you feel awful and maybe can't drag yourself out of bed.

 2:51
 And depending on which of these options is going on will determine, I think whether it's a flare that you can manage on your own by increasing your pain medication, maybe adding in anti-inflammatory meds for a short period of time and other non-pharmacological inventions like interventions like heat and cold, for example.

 3:12
 Or whether you need to seek help from your team, usually via the nurse helpline.

 3:17
 And this might be that you need a depo injection or steroid injection or maybe a short course of oral steroids, for example, if you're severe, if your flare is very severe.

 3:30
 The other thing that comes into the equation, I think is also whether you're flaring because something's triggered the flare and it will gradually subside and get back to normal, or whether your medications are losing efficacy and you might need a proper medicine medicines review because things are becoming less effective.

 3:51
 So that's the other sort of area that I think we need to think about.

 3:56
 I often get a flare of particular joints which have sustained a lot of mechanical damage where there's been surgery and where the joint doesn't necessarily swell, but it can become acutely painful very suddenly and it can prevent you from carrying on as normal.

 4:14
 And it's very disruptive to things like daily work and social life and very wearing if it carries on for any period of time.

 4:24
 But I think as a patient, as you become accustomed to the pain sensations in your body, as you, you learn to live with your disease, you, you start to interpret pain patterns, if I can refer to it as that, and you come to realise what might be triggering a flare.

 4:45
 You learn avoidance techniques.

 4:47
 Obviously if you, you understand what's triggered your flare, maybe stress or something like that.

 4:52
 So you try and avoid the things that are going to trigger flares, but their timing can't always be managed.

 4:58
 And you can find yourself going headlong into a major flare the day before some fantastic social event that you might have been planning for weeks, which can be devastating.

 5:09
 I've certainly experienced all the different types of flare, as you can imagine after 46 years of this disease.

 5:15
 And the thing that I find most challenging is the flares that aren't triggered by anything that you can put your finger on, but they literally come out of the blue.

 5:22
 You know, you'll perfectly fine one minute and Wham the next minute.

 5:26
 You can't wait there, for example.

 5:29
 So these are the kind of things that you find really disruptive, irritating and difficult to manage.

 5:36
 And I think when you have a sustained flare over a period of time, maybe weeks or even months, it's very hard to deal with that.

 5:45
 And you can become quite depressed over time.

 5:48
 So it has a major toll, you can have a major toll on your mental well-being as well as your physical well-being.

 5:55
 Thank you so much for sharing that.

 5:57
 Now, just listening to you, it, you know, obviously has a huge impact on lots of different things and it can be very different from episode to episode for the same patient.

 6:05
 But you can really see why a patient might need their specialist team, and they may need that advice and support at that time.

 6:11
 So if I can come to you, Professor Hider, with regards to medications, that also mentioned in her answer that there's lots of medicines that we can potentially offer our patients.

 6:22
 And so I wonder if you might just be able to take us through if a patient in a flare, what kind of medications we may be able to offer from analgesia, right the way through to our specialist medications.

 6:34
 OK.

 6:34
 So we want to take a bit of a stepped approach when we're thinking about managing a flare, don't we?

 6:38
 So we might want to think about topical treatments, first of all, anti-inflammatory gels and we'll talk about the non-pharmacological topical treatments that might be helpful later.

 6:48
 And that might be useful, particularly if it's a single joint that's affected.

 6:52
 If it's multiple joints, then clearly, we need to think about analgesia, starting with things like regular paracetamol or co-codamol, according to what people can take and what they've been prescribed previously.

 7:04
 And it's important to encourage people to take analgesia regularly when they're in a flare, rather than just on an as and when needed basis.

 7:11
 Obviously when the flare settles then the analgesia can be reduced, but it's important to remind people not to take more than the daily recommended dose of medication.

 7:20
 People may step up to use anti inflammatories if they're not contraindicated, things like ibuprofen and diclofenac.

 7:26
 If they've used them previously successfully, clearly, they can be used again, but we tend to use these only for short periods because they've got potential side effects, particularly around the GI tracts and blood pressure.

 7:40
 As I also said, we also want to think about why people might be having flares.

 7:43
 So from a medication point of view, we'd be thinking, have people had to stop either the DMARDS or biologics for a reason?

 7:50
 It might be that they've had an infection, or they've had surgery and their medications have been stopped and that might trigger a flare.

 7:56
 Or are they struggling to take medication because of side effects?

 7:59
 So all of those things need to be considered when you're thinking about medical management of a flare.

 8:04
 So it's a stepped approach, starting with simple analgesia like paracetamol and then stepping up to stronger painkillers.

 8:10
 But thinking of course, always what the background and disease control is like and what we can do to improve that.

 8:17
 And how do you differentiate that, Professor Hyder, with regards to is this a sustained flare or do I as a rheumatologist need to get in and start changing the disease, modifying drugs, the biologic therapies that we have?

 8:30
 And for that some patients may be on.

 8:33
 Of course, the history's all important there, isn't it?

 8:35
 So, you know, we ask, ask the patient, you know, isn't it a flare that's been triggered perhaps by doing too much something like an episode of a lot of gardening over the summer.

 8:45
 People may have particular flares and that can be unpleasant at the time but be short lived.

 8:51
 Or is it that they're having recurrent flares?

 8:52
 They've had a number of flares over a month.

 8:54
 Ask people to keep a diary of their symptoms and report back.

 8:58
 And that that can be quite helpful.

 8:59
 I think if people have recurrent flares, that's when we want to think about changing medicine.

 9:05
 We'll obviously talk a little bit later about the role of steroids in managing flares and it's, but it's really about the number of flares that people have had and the severity of them and then also what their Disease Control has been like.

 9:15
 So if somebody's not had a flare for a long time and is suddenly having lots of flares, I'd want to be thinking, well, you know, what's triggered that and lots of really sort of useful information in there as well.

 9:26
 So thank you very much.

 9:27
 So if I can come to you, Jade.

 9:29
 So again, we're talking about medication here, but we know medication may not be the only thing that we can offer our patients that may be in a flare.

 9:35
 So is there any other advice that you may give as a physio to our patients that are in flare?

 9:43
 Yeah, thanks Julie.

 9:44
 And I, I think as I also importantly captured the symptoms of the flare can really vary and are very individual and aren't the same for every individual each time.

 9:54
 And, but so there are a number of different strategies that I think we, we often talk about and can advise people to explore to see what works for them.

 10:04
 So I guess some people may turn to some practical strategies, thinking about things like using heat or cold therapies in the first instance.

 10:13
 And it's important for that person to work out what they feel is most helpful to them at any given time.

 10:19
 The idea of heat is it could be comforting; it may be helpful when people are experiencing stiffness, and it may even ease some of the movement and hopefully improve some flexibility.

 10:30
 So I guess that can in turn help with a bit of relaxation around the area that is particularly painful.

 10:37
 Cold, on the other hand, may make sense as a strategy when we think about flares around joints that are potentially showing signs of warmth around the joints from the inflammation at the inflammation in the inflammatory activity.

 10:49
 And I think it's just important that we do remind people to think about the safety aspects of applying heat and cold when they're when they're trying those strategies.

 11:02
 Sometimes people talk about using movements and exercise to help with their flares.

 11:07
 We know that inflammatory conditions tend to follow a platen where joints are stiffer when resting, but better with movement.

 11:15
 So it could make sense that in a flare, movement might be helpful.

 11:20
 Some people find that exercising is additionally helpful.

 11:24
 And we know that exercise can promote endorphin release, which is a natural painkiller, and it can promote well-being.

 11:31
 There's some good evidence around it potentially improving sleep, and we're starting to understand that it really can have an anti-inflammatory effect on the body amongst other things.

 11:41
 But I recognise that I can also feel a bit counter intuitive when people are feeling and they are having a flare or experiencing A flare.

 11:49
 But I guess it's about thinking about what people might find is possible and helpful to them.

 11:54
 And I certainly have met people along the way that when they have started to use exercise and activity, even if they're going through a flare, they find keeping some of that up does help them to manage those symptoms at that time.

 12:11
 There's some other strategies as well, things like splints.

 12:14
 Splints and aids might be more helpful at times of flare than others.

 12:18
 For some people, things like walking aids can take the load off the lower limb joints, especially when people are walking.

 12:25
 Wrist splints or things like edema gloves may give support and therefore comfort for people when they're in a flare.

 12:32
 And I think one of the key things people often describe around flares, they can even be signalled or accompanied by flares in fatigue levels.

 12:41
 And, and one we know that exercise and activity actually can potentially help with fatigue.

 12:48
 When people are in flare, it can obviously be harder for them to try that.

 12:52
 But modifying activities can be a useful piece of advice to remind people that maybe modifying and paring back their activity levels at that time could be a strategy to try.

 13:05
 But it depends.

 13:06
 It's really individual for people to explore and trial.

 13:10
 And, and I guess the other thing I really thought about was reminding people about mental well-being strategies.

 13:17
 And I also really touched on this is thinking about what strategies at that point in time, such as kindness, self-compassion, making, making time and space for relaxation and, and, and mental well-being strategies, what could be important for them at that time?

 13:34
 And I, I guess there's just lots of different strategies which we often find people need to try and work out because it's a very individual toolbox that people need to put together.

 13:45
 And I think, you know, there's lots of information there, lots of things that we can discuss with our patients if they're calling in on an, on an advice line and, and lots of things that can potentially be helpful to patients.

 13:57
 And then again, we can't underplay that piece about reassurance.

 14:02
 And sometimes patients really need that.

 14:04
 And, and I think certainly as a, as a nurse, and I remember being a rheumatology nurse, very new, not knowing anything.

 14:11
 And actually, and now as I've sort of become more experienced, I've got lots of junior nurses coming through that importance of going out and learning what other people in the MDT do.

 14:20
 So what does the physio do?

 14:22
 What does the OT do?

 14:23
 What does the Podiatry do, the Podiatrist do?

 14:26
 Because actually then you understand what you can potentially advise people on safely that's evidence based and you know, really be imparting that knowledge with some confidence as well.

 14:39
 And lots of things patients can do to, try and keep themselves comfortable before we even sort of delve into the medication side of things.

 14:46
 But I am going to come back to medication.

 14:48
 So if I may come back to Professor Hyder here.

 14:50
 And you mentioned earlier about steroid therapy and sometimes all of our efforts unfortunately don't get that patient out of flare.

 14:58
 And we do need our medications to help our patients and get disease activity under control.

 15:04
 So are you able to talk to us through the role of steroids when patients are in flare?

 15:11
 Sure.

 15:11
 So I mean, obviously, we would encourage the use of some of the other treatments first like heat, cold and analgesia.

 15:20
 But as you say, steroids can be really effective for a flare.

 15:25
 They can have significant side effects in the longer term and can also mask or aggravate infection.

 15:29
 So it's important that they're not given to people whose flares have been triggered by infection until their infections are treated.

 15:36
 If we are giving steroids, we usually give them as a single intramuscular injection.

 15:41
 As I also said, I am depo-medrone which can be very effective or steroid tablets.

 15:47
 There'll be some patients who prefer taking steroid tablets and some units that prefer using steroid by tablet.

 15:53
 But obviously then they've got to be, the dose has got to be weaned down, and they've given over a longer period compared to just a single injection.

 16:02
 With steroids, the general principle is that we we use the lowest dose needed and for the shortest amount of time needed because taking too much steroid can obviously affect how much steroid an individual produces themselves and leads to adrenal suppression.

 16:15
 So if you're giving courses of oral steroids, you need to remind people about the steroid warning cards so that they're not stopped suddenly and that they're weaning gradually before they're stopped.

 16:27
 But long term, it's important that we record how much steroid people are having over time and because they can cause problems like osteoporosis, increased risk of diabetes, increased risk of heart disease.

 16:39
 And in the short term they can obviously give people stomach problems.

 16:42
 So you may want to ensure that patients are taking the PPI if possible.

 16:48
 And steroids are obviously part of our armamentarium in managing flares.

 16:53
 But as I say, if you haven't used lots of steroids, then I'd want to be looking at people's background therapies.

 16:59
 What needs changing into people's disease, Disease modifying, drug doses need changing.

 17:05
 Is that biologic effective?

 17:07
 Do they need a switch?

 17:08
 Do they need something to add in?

 17:10
 And all of those things need to be considered really, it's interesting as you walked us through that's actually giving a patient steroids is a big deal.

 17:19
 And there's a lot of thought that goes into that and a lot of checking and a lot of safety work that we do before we're even passing that prescription or doing that injection.

 17:28
 So I think that's great that you've covered that and that people are aware that it's not, you know, our go to, there's lots of steps as Jade’s taken us through and brilliantly that, you know, even before we get to this stage, because actually given that is a is a big deal, isn't it, given the steroid therapy?

 17:43
 Absolutely.

 17:44
 And I think it's sometimes important to reinforce that with people because sometimes if people have had lots of steroids over the years, they can forget what the implications of that are.

 17:54
 So it's sometimes important, even in people who are really experienced with their arthritis, to be able to walk them through what the safety concerns are and why we're not just going straight away to offering steroids.

 18:06
 They obviously have a place.

 18:08
 Absolutely, absolutely.

 18:09
 And I think, you know, just trying to get the the that inflammatory picture and think about is these sports are needed or is there something else going on?

 18:18
 And we know, you know, patients who also took us through brilliantly earlier can be experienced and flare for lots of different reasons.

 18:24
 So it may not be the medicine that we need to sort of go in and do anything about it may be some of these other strategies that we've talked about.

 18:31
 So no, thank you so much for all of that and useful information.

 18:35
 And I think just listening to all three of you and talking about sorts of flaring and how patients can be affected.

 18:40
 We, we've, you know, heard that it can affect mood and Jade talked about mental health and today and the impact on the patient and, you know, patients not being able to sleep, do their activities of daily living and, and it is really, really hard for people that are in that position of being in a flare as else has taken us through.

 18:58
 So it is important that we have services available for these patients and they're able to get through to their healthcare teams and seek help.

 19:05
 And when they have run out of steam and all their coping mechanisms that they've tried are not working.

 19:11
 So that is important that we run good advice lines for patients to be able to access us when they need us.

 19:19
 But coming back to you, Ailsa, I know that there was an abstract at BSR this year about some of the work that NRAS have been doing, and you've been developing A module, I believe, around managing fairs and pain.

 19:33
 And I wondered if you might be able to walk us through a little bit of that.

 19:36
 Sure.

 19:38
 So we have an e-learning programme called Smile RA which comprises currently 8 modules including one on managing pain and flares which we Co produced with the team from the Heywood and Keel including Sam of course Ian Scott and Sarah Ryan and the wider team.

 19:56
 And we wanted to evaluate the impact of doing the module and what this impact had on people's ability to.

 20:06
 Know about managing their flares and having the confidence to manage their flares and their pain.

 20:11
 So we did a survey of people in early 2024 who had done the module, and participants were asked how knowledgeable and confident they were at managing pain and flares before participating in the module and then again after they'd completed the module.

 20:30
 Over 600 people took part in the survey and what we were able to show was a statistically significant improvement in people's knowledge and confidence to manage their pain and flares after completing the module.

 20:44
 For example, on the knowledge scale before the module, only 5% of people said that they felt very knowledgeable about managing pain and flares after completing the module that had risen to 22%.

 21:00
 And people who said before the module that they were knowledgeable at 31%, that rose to 54% after completing the module.

 21:11
 And the the confidence scale was very similar.

 21:15
 So we're, we're confident now that this participating in this programme and this module certainly is likely to help people to have, you know, to come up with additional strategies and coping mechanisms to manage their, their pain and flares.

 21:33
 We did ask other questions about pain levels and medication taken to control pain.

 21:38
 And we found that chronic pain was common occurring in 63% of people with 36% experiencing high impact chronic pain.

 21:47
 And of the 98% experiencing pain in the last three months, 34% had pain on some days and 34% on most days and 29% every day.

 21:59
 So I think that pain is something that is actually really very common and sometimes not as well managed either by the medical team or by their own self-management coping strategies as as potentially it could be.

 22:17
 Sorry, I was just going to say you can access smile by going to our website/ smile and health professionals can register free of charge as a health professional.

 22:27
 So it's, it's there to do if, if they would like to, it's an absolutely incredible resource.

 22:34
 I've been really fortunate to work with you on another module.

 22:37
 So we know that there's a lot of hard work that goes into preparing these modules.

 22:41
 You know, everything's evidence based and it's great that that's available for patients and that we're also using it to teach our staff.

 22:49
 And it's such a brilliant learning environment that we're able to certainly our junior nurses are learning about pain and fatigue by going through some of those small RA modules.

 22:59
 So thank you for signposting us to that.

 23:01
 And I would encourage everyone listening to have a look because there's lots of great stuff on there.

 23:07
 So thank you everyone for being here and with us for this podcast.

 23:11
 And our key takeaways from this podcast are that obviously there's lots of healthcare professionals that can be involved in a patient's care when they're in flare and that it's important to get the the information right when we're dealing with patients on the advice line when they're in flare.

 23:29
 So making sure that we've got that good knowledge and expertise to be able to share with patients.

 23:34
 But I just wondered if there's anything else that people wanted in.

 23:38
 So Elsa, from a patient perspective or how do you need us to be?

 23:43
 I think that patients need to be aware that there are a lot of things that they can do themselves to manage pain and flares, which is why they need to learn about supported self-management and its value in their long-term self-management of their disease.

 24:06
 So accessing information from the relevant patient organisations is really important.

 24:15
 Learning to read your own pain patterns and knowing how to manage flares can be very helpful because you really only want to go to your team when your own coping mechanisms have run out, rather than going to the team first before you've tried anything yourself.

 24:32
 Yeah, and I think I would just say about stepping up analgesia, starting with simple analgesia, but taking regularly, particularly people who don't take a lot of analgesia normally starting with paracetamol, you know, going through the analgesic ladder, adding in those steroidals if people can take them and then thinking about steroids if needed change anything more.

 24:55
 I don't think so.

 24:55
 I guess it's not being afraid to try different strategies and getting to know more about yourself.

 25:01
 Exactly as I also said.

 25:03
 But I guess it's, it's being aware there's lots of different ideas.

 25:07
 You never know what may suit that, that you as a person, as an individual and, and encouraging people to explore the different ideas, but assuring them that there's places to go if that doesn't work.

 25:17
 And I guess that's, you know, that's the point of the advice line, isn't it?

 25:22
 Maybe making people aware that when they ring the advice line that they can ask for a physio appointment, or they can ask if they're having problems with their feet flaring or being really painful that they could see a asked to see a podiatrist for example.

 25:40
 It may not always need to be the nurse specialist.

 25:43
 It may be that some other strategies could come into play to the point.

 25:50
 So I'd like to take the opportunity.

 25:52
 We've come to the end of our time together.

 25:54
 So I'd like to take the opportunity to thank everyone for giving up their time to talk through such an important thing.

 25:59
 And flares can happen to any of our patients.

 26:01
 And it's really important that we're able to manage this well for our patients.

 26:06
 We've heard how it can affect patients from Ailsa and if we don't get it right, how devastating that can be.

 26:13
 So we've got to make sure that our health professionals that are delivering these advice line services have really good knowledge and are able to signpost patients to things that are really easily accessible.

 26:26
 And it's been changing in this sort of area in this topic and has been looked at a lot over the recent years.

 26:33
 And it's really encouraging to know that people are still putting a lot of effort into it, trying to make it better, making sure the access is improved, and that the people that are on these services and delivering this service are really, you know, really knowledgeable about and able to help their patients as much as they can.

 26:52
 So hopefully everyone listening can think about how and some of that information we've shared today and how you can use that to respond to your patients when they're contacting you.

 27:01
 There is a plethora of things that you can do before thinking about medication.

 27:05
 And it's important that we understand this well and that we're able to walk our patients through that and help them and see if any of those strategies would help them come out of a flare.

 27:16
 And it may be that from listening to the podcast today that you go away, speak to your teams, and modify or review what you're currently doing in your service and how you may be able to build on that and how you may be able to support patients even better than you already do and when they're having this really difficult time of being in a flare.

 27:35
 So it's been really lovely to spend time with you.

 27:38
 But a massive thank you to Professor Hider, to Jade Skeates, and to Ailsa Bosworth for joining us for this podcast today.

 27:45
 So if you are interested in learning more about the advice lines, BSR do have some resources that they've been developing in the background.

 27:55
 And again, for anyone listening in, these are really great resources that can really help guide you through when you're first at learning to deliver these types of services.

 28:04
 So this can be found on the BSR e-learning platform, really easily accessible.

 28:09
 You just need an e-mail address and then you will be able to access those resources.

 28:15
 Again, some of our resources that are available are Open Access.

 28:20
 You don't have to be ABSR member to be able to access them.

 28:23
 But we do encourage people to think about it because actually that does unlock lots of good education, easily accessible and able to do at your in your own sort of pace and time.

 28:32
 So please do have a think.

 28:34
 I hope you've enjoyed the podcast and it's given you some things to think about.

 28:37
 So thank you so much to everyone here for joining us and for everyone that's been listening this evening, thank you for listening to Talking Rheumatology Spotlight brought to you by BSR.