Episode 16 – Q&A IV

Q&A IV

Introduction: You’ve sent us the questions, whether we have the answers is an entirely different matter. Inflammatory with Debbie Wilson and Katy Pieris, navigating life with inflammatory arthritis.

Debbie: Hello and welcome to Inflammatory with Debbie

Katy: and Katy.

Debbie: We’ve had a busy morning already haven’t we Katy?

Katy: We have. We’ve just interviewed Rachel Smith, who you’ll be able to hear next week. It was absolutely fantastic to hear her story.

Debbie: It was. Her journey is amazing. To give you a slight teaser, shall we say, she’s living with axial spondyloarthritis, a type of inflammatory arthritis, and she’s doing a new campaign for NASS, Faces of AxSpA, and you’ll be able to hear a lot more when it comes out next week.

Katy: Yes, and how’s your week been Debbie, before now?

Debbie: It’s, yeah, hot, lovely weather, but I did a U last week. I thought I was being organised. I had a blood test and an x-ray.

Katy: I thought you were going to say you swore at somebody.

Debbie: Or went on a marathon and ate a sausage roll. No, that didn’t happen. I really thought I was being organised. I had an x-ray booked at four o’clock and a blood test. You have to, with my hospital, you have to book online, and so I thought I’d be organised. I booked it there for 3.40. If it was running over, I could still get time to do the x-ray. Went and had the blood test, no problem. The people who take my bloods, they are just so fun, and we have such a laugh. I absolutely love them. Then I went over to the x-ray department. It was rammed. It was so busy. In the queue, got to the front of the queue and the woman just goes, you’re at the wrong hospital.

Katy: Oh no, I know that feeling well.

Debbie: She was like, can you get to this hospital? I was like, it will take me at least half an hour to drive there. I just thought I would miss it. I wouldn’t be able to get there. She’s booked it for this week at four o’clock. Great. No, midday. I need to remember it’s midday. I’m going to get everything wrong.

Katy: You’re going to be there four hours late this time.

Debbie: I probably will be. But yes, on the letter they sent, they even highlighted the hospital. They must be thinking, how else are we going to get patients to realise what hospital they should go to? I just need to read letters better, I think.

Katy: It’s an easy mistake to make.

Debbie: Well, I would have thought so. Obviously, they’ve highlighted it. So, it’s happened to many others. But how’s your week been?

Katy: Oh, it’s been really good. I mean, really tiring. For work, I had a day trip to Newcastle last week and I left my house at about 6.30 and I didn’t get home until 12.30 at night, which was dreadful. It was a really full-on day, but great fun. I painted a beautiful picture and then I had my parents staying over the weekend. We went to a little beach trip to Little Hampton, which was very nice. I’ve never been before. It’s much nicer than I anticipated. Everyone said there’s nothing there. There’s loads there. There’s a beach, there’s a sea.What else do you want?

Debbie: To put it into context, I used to live near where you now live, Katy. And so, I know where you used to go down for the beach and that. It’s quite easy to access. What we take for granted, living on an island, that there are beaches around.

Katy: Yes. And this one’s pretty nice. There’s actual real sand.

Debbie: Yeah. Others are rocks, aren’t they? Pebbles. But yeah. What should we get on what we’re talking about today? We should. Yeah. So, this week is our, I can’t believe it’s our fourth Q&A session. So, thank you to everyone who sent in questions. And to crack on with the first, this came through from Abigail and she’s 29 and currently on two disease modifying anti-rheumatic drugs, DMADs as we call it.

And she has psoriatic arthritis. And there’s a chance that she may have to go into biologics at some point this year or next, but she wants to go traveling in a couple of months this year. And so, have we had much experience of traveling with biologics in particular, storing them or flying with them?

Katy: I haven’t personally. So, all the times that I’ve been on biologics, I’ve managed, I’ve basically planned my holidays and my trips around my injections or I’ve slightly tweaked. This might not be something that you’re advised to do. So don’t take this. But I have occasionally slightly tweaked when I take them to kind of mean that I don’t have to take them away with me, which obviously if you’re going to go traveling, isn’t something that you’re able to do. If I was Abigail, I would have a chat, an open conversation with my rheumatologist and understand which biologic, what the sort of circumstances are, because I know they’re all quite different in terms of storing and transporting them. When I was first on a biologic, I used to get it delivered to my office, keep it in the office fridge and then use like a cool box to bring it home, bring them home. So, I know there are routes around it because I’ve seen on like social media, people do travel with their biologics, but I think it probably depends on the specific one. And I think I’ve heard of people managing to somehow get them delivered to where they are.

Debbie: Okay, well abroad as well.

Katy: Yeah, I think, I’m sure I’ve heard people talk about this previously. Obviously, I don’t know for sure. I’ve never done it, but I’m sure there are ways and methods around it.

Debbie: Yeah, I would suggest going and talking to, definitely as you say, talking to the rheumatologist team because my daughter’s doing the same. But she unfortunately cannot take her medications with her because it has to be stored in the fridge. And she’s going to be doing interlink rail across Europe, so she can’t take a fridge with her. And she can’t change the med that she’s on at the moment because she’s doing her A-levels. And so, we need that stability, the A-levels are more important. And she’s actually then got an appointment just before she goes traveling. And her team will talk to her about kind of what to do if she flares and things like that, because her answer was, I’ll just speak to mum. And it’s like, well, as lovely as that is, again, I’m not medical. I wouldn’t want to give her the wrong information, but her team is fantastic.

Katy: And there are the infusions, aren’t there? So, if you’re kind of going away for six months, some of the infusions are like six months apart.

Debbie: Yeah. I’m not sure how common they are now, because I know around COVID times, some of the infusions then got changed into subcut because people just can’t go into hospital. But again, we’re not medical here, but I would suggest just going and speaking to your team and seeing which biologists, again, as Katy said, some might have changed, they might even be in tablet form now. But it’s also to remember, you need to give it time for them to work as well, because you don’t want to start changing them and then going traveling and then not working and you’re in a lot of pain. So just speak to your team about the timings of everything as well.

Katy: No, definitely. Good idea. So, we’ve had an interesting question come in from Patrick, haven’t we, around sleep. He asked, he said, sleeping, what’s the best method as I can’t turn like I used to?

Debbie: That’s a really great question, because I must admit, I’ve had, I think I’ve tried most things like pillow on my knees, because when my knees and my hips are painful, obviously turning and then putting them, I just wake up in just so much pain. So, I’ve tried pillows, soft pillows. I’ve even tried, I think when I was pregnant, I had one of those kind of pregnancy pillows as well, that you can go around your knees and stuff. It is, and I’ve even sometimes told my husband to, I can’t, I have to sleep in a certain way and I don’t like looking, I don’t like looking at him when I’m sleeping.

Katy: And so, don’t you have your eyes shut?

Debbie: I do, but I just, I just like, I need to have air. It’s just something in my head. So, I’ve asked him a few times if we can change the position so I can move on the right or the left sort of thing, especially when my eye was painful because I had to sleep on my right. Yeah. So, we changed positions.

Katy: Do you to sleep on your side.

Debbie: I do. Yeah.

Katy: So, I sleep on my back like a dead person. I can’t sleep on my back. I probably should.

Debbie: I just, no, I can’t. So no, I’m generally a side sleeper. So again, which is why I’ve tried the pillows between my knees and things like that. But what I did then try and find, because obviously it’s a really vicious circle because you need the sleep, especially when you then get fatigued during the day. And then when you can’t sleep, you just like, you just feel like a zombie. I have tried a few things just to kind of help me sleep at night. And I have tried to kind of think, you know, get a bath, get a really good bedtime routine going as well to make you feel more relaxed.

Katy: It’s all about sleep hygiene, isn’t it? And how you go to sleep. Yeah. That’s why I did a bit of chat GPT-ing before this, looking at sleep. And ideally, you only want to take sort of 15 minutes to get to sleep. I’ve always been quite intrigued by my sleep, and I can’t really wear my fitness watch to sleep because it really bugs me. It really irritates me. And I’m having it around my wrist, so you know how they track sleep. So, I invested in one of these fitness rings, but a really, really, really cheap one, just to specify that because they’re bloody expensive. And so, I’ve been looking at my sleep for the last three days and my sleep’s actually not too bad. Even though sometimes I wake up and I feel like I’m dead still. I generally go to sleep within one minute to 15 minutes, which is apparently sort of optimum. I managed to get like a decent amount of REM, deep, light, and I tend to get about seven hours of sleep a night. And I believe looking at the internet that a kind of seven to nine hours is optimum, but obviously it depends on the person because we’re all a little bit different in terms of what we need. But it’s really interesting. I find it quite interesting, all the sleep stuff. And then looking at sleep hygiene, it’s trying to keep that sort of same pattern every day. So going to bed at the same time, as you say, having like a bath or something to wind down. And then just trying to be sort of quite calm before bed, thinking about what you’re eating, what you’re drinking and how everything kind of affects you. And can you nap?

Debbie: No, I can’t. I don’t like napping. Because I just, I then can’t sleep better at night. But now because of my fibromyalgia and medications that my doctor gave me, they are a painkiller but also a sedative. So, I take that at night and that makes me sleep. And I didn’t take it on Saturday night and I had the worst sleep. I just kept waking up constantly. So yes, at the moment that is really helping me sleep. And I do feel so much better for it. Okay. Because I think otherwise you just get in this vicious cycle. And then obviously then you don’t eat as well because obviously if you’re that much tired, you just want that sugary, that quick snack to keep you going. But obviously that’s not good for you either. And so, it is just trying to make sure. And it is hard. It is. It’s not easy because you read everything that you should be doing, which sounds great in theory, but in practice it is so hard. So that’s obviously a very long answer to that question. It is. Yes.

So, let’s go on to the next question. Is inflammatory arthritis more common in females? I think people have commented because obviously we’re both women and we have different types of inflammatory arthritis.

Katy: So, do you know how common it is in other types? So, I know how common it is in rheumatoid arthritis. In rheumatoid is predominantly women. So, it’s about two to three times more women than men that are diagnosed with rheumatoid arthritis. But I understand for other forms, it’s slightly different.

So, sort of AxSpAX, gout and psoriatic arthritis are more prevalent, aren’t they, in men than in women?

Debbie: Yeah, I think psoriatic arthritis is about equal men and women. Oh, it is. And obviously the type that I have, juvenile idiopathic arthritis, generally that is more common in girls, shall we say, because you obviously get diagnosed when you’re young. However, obviously JA again is an umbrella term and it depends on that type of JA that you have because the enthesitis where the inflammation occurs in the entheses, which is the point where the tendons and the ligaments attach to the bone, that is actually more common in boys. So, I think it really and lupus is more common in women than in men. So again, it really depends on which type of inflammatory arthritis. Inflammatory arthritis obviously does affect men and women. And I think, Katy, we do need to make sure that we do represent the male perspectives, and we will be doing that soon.

Katy: Yes, that would be really, really great to hear. And then a really good question actually has come in that I’m quite interested to see what you think. What would you say is the most frustrating part of living with inflammatory arthritis?

Debbie: Again, really great question. And I would say the fluctuation side of the disease, because people can see you and they think, oh, you’re fine, you’re well, you’ve been cured. And then the next day you’re having a really bad flare and then what’s up with you?

Katy: And you’re fine yesterday.

Debbie: Yeah, exactly. And I think, especially when I was a child and trying to keep explaining that to teachers, to just everyone, that for me is the most frustrating side. I really wish people could understand that even though we’re on medications, the disease can still flare. We don’t know much about our immune system and why we’re doing it and why that volume keeps turning up. I love that analogy of that sound system and that really resonates with me. And sometimes it’s just turned up and we don’t know why, but just to really get people to understand that there is no cure for these diseases, and this is what it is like to live with. How about you?

Katy: So, I completely agree with that, and I’ve written that down actually myself, the kind of fluctuations in the disease. But I think for me, it’s having to explain it to other people and then people just making the wrong assumption that it’s osteoarthritis. And the amount of times that I have to try and explain that it’s an autoimmune disease, what that actually means. And people don’t listen, people don’t understand how to listen. Yeah. So, that is the thing. I want to pretty much kill everybody that doesn’t listen to what I’ve said. Maybe I shouldn’t say that.

Debbie: No, but I get it. It is very, very frustrating because I think as soon as you say that word arthritis, everyone still assumes it’s osteoarthritis. It’s like, oh yeah. And I’ve said before, this is why I’ve really got more involved in the rheumatology world was when my daughter got the diagnosis and she got exactly the same comments. Society needs to understand that inflammatory arthritis is very different to osteoarthritis. And the last question then is, is there one song that resonates with you and what is your go-to to cheer you up?

Katy: So, the one song that resonates with me is Arctic Monkey’s Mardi Bum because my brother used to basically say that I’ve always looked like looking down the face of a barrel of a gun because I was such a f**king miserable bitch as a teenager.

Debbie: You were a miserable person, Katy.

Katy: Yes, I was a miserable person as a teenager. So, that song still, I bloody love it. I love kind of putting it on and just, I guess, reminiscing about being a hormonal cow bag.

Debbie: I would have loved to have known you in your teenage years.

Katy: And then the go-to to cheer me up is Happy. There’s Bruno Mars and there’s a Pharrell Williams version, isn’t it?

Debbie: I don’t know, which one is that? From Despicable Me? Yes, it is in that. Yeah, because there’s one line in that that just drives me insane and I can’t, it’s about a wall, being in a room with no walls or something and it just makes no sense, and it just drives me mad.

Katy: A lot of songs don’t make sense though, do they? And I always sing the wrong lyrics. When you then see what it actually says, I’m like, oh, well, I’ve been singing that completely wrong for years. What’s yours then, Debbie?

Debbie: Okay, sorry, I’ve just gone back. I remember the lyric is a room without a roof. Well, how’s that a room? What is that then, technically?

Katy: Well, it’s a, I’ve got one in my garden, like a, well, it does have a roof.

Debbie: I know, but is that technically a room?

Katy: I think it’s a room. If you’ve got four walls, it’s a room, right?

Debbie: I think we have to agree disagreeably here. But anyway, my song is Elton John’s, I’m Still Standing. I am still standing, literally, that’s how I get through my days and my, yeah, on my life, that’s me and it’s resonated so much. And I did actually watch Rocket Man the other week with my daughter. She’s in love with Taron Egerton. And it’s a really good film. It’s a feel good film towards the end. And yeah, I think it just resonates with me, you know, going through his childhood and how he’s gone through everything. And it’s just like, yeah, I’m still here, I’m still going. Still here, yeah. Yeah, and it’s also a good song to dance to around the kitchen as well.

Katy: Are you a kitchen dancer on a Friday night or any night?

Debbie: Any night when I have to cook, yes, generally. Earphones in because my kids and my husband hate my type of music. So I just have that in my ears and yeah, I just cook and dance away.

Katy: My son doesn’t like me dancing. Or singing. I mean, I am like a dying cat when I sing.

Debbie: We’ll have to get you out on a karaoke night.

Katy: Oh, that’s bad.

Debbie: Okay, maybe not then. I always used to have a disco evening with my kids. We had a really good routine. I used to take them to all their clubs, come back, do dinner and to kind of tire them out that little bit more. We had a disco evening, and it was great.

Katy: Oh, we play tag. That’s what we do.

Debbie: Oh, really?

Katy: Like tag, running around the house.

Debbie: No, we had like Take That blaring and stuff. Yeah, and actually my daughter did actually get told off by my neighbour one time because she just kept playing Elton John very loudly. That could be worse. She could be playing drum and bass like my husband does, but you know, Elton John, bless.

Katy: Oh, that’s cute. That’s how I like that.

Debbie: And it also brings us together as the three of us, the girls and me dancing around. Anyway, thank you to everyone who sent in your questions. I hope we’ve answered them well for you. Please do follow us. We are on Blue Sky, Instagram, Facebook and LinkedIn. Please do sign up to our newsletter at inflammatoryarthritis.org. And next week, please don’t miss the episode. We have Rachel Smith on and listening to her journey and everything that she’s doing. She is an amazing individual, and we were very proud to have her on our podcast. So, until next week, it’s goodbye.

Katy: Goodbye.

Inflammatory Arthritis UK are hosting their first ever online event on the 20 May at 6-7pm to raise awareness of World Autoimmune and Autoinflammatory Arthritis Day. Please do join us and a chance to meet Debbie and Katy online to hear more about the charity and be part of our community. More information and full agenda will follow. Please do join us and to sign up email us at: info@inflammatoryarthritis.org

In this lively and heartfelt episode, Debbie and Katy reflect on a busy week and preview next week’s exciting guest — acclaimed photographer Rachell Smith, who lives with axial spondyloarthritis. Please make sure you don’t miss it.

Debbie covers how she did a Katy, and went to the wrong hospital for an Xray, and they kick off their fourth Q&A session by answering a question about traveling while taking biologic medications. The hosts share their own travel tips, stress the importance of medical guidance, and offer reassurance for those navigating similar journeys.

Next, the conversation turns to sleep and inflammatory arthritis. From bedtime routines and positioning to gadgets and frustrations, Debbie and Katy talk openly about what helps — and what doesn’t — when it comes to getting quality rest with a chronic condition.

They also tackle the question of whether inflammatory arthritis is more common in females, exploring key differences between RA, axial SpA, PsA, and juvenile arthritis. They address what frustrates them most about living with IA and they cover widespread misconceptions, including the confusion between inflammatory and osteoarthritis, and highlight the need for more male representation in arthritis narratives.

The episode wraps up on a fun note with each host sharing their go-to feel-good songs and how music brings moments of joy amid daily challenges.

💬 Topics Covered:

• Traveling with biologic medications
• Sleep challenges and hacks
• Gender and arthritis prevalence
• Inflammatory vs. osteoarthritis
• Personal reflections and musical cheer

Join us next week for our special guest, Rachell Smith!

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Disclaimer: The podcast is for informational purposes only and is not intended to replace professional medical advice. We talk about our personal health journeys and the podcast is not intended to provide professional medical advice, diagnosis, or treatment. We are not medical professionals and in no way claim to be medically trained. The podcast does not take responsibility for any losses, damages, or liabilities that may arise from the use of the podcast. The podcast does not assume responsibility for the accuracy of third-party content.

For more information, head to https://inflammatoryarthritis.org/