Episode 30 – IA: Treatment, pain & daily life

Debbie: Hello and welcome to Inflammatory with Debbie.

Katy: and Katy.

Debbie: How are you, Katy? But I want to know how was your work event and did you actually manage any self-discipline this week?

Katy: Gosh, can I ever do that? I don’t know. Yes, I know. Didn’t get home as early as I would have liked to, but I didn’t over drink.

Debbie: oh okay

Katy: So I missed my last train because I just, used to know all the trains like to get home off the top of my head. could reel off which station and what time the train is. They’ve all changed post COVID and I’m not as well practiced at going out late. So, I did manage though, not to have to get the underground in a cab. I managed to work it out by doing multiple overland trains. So a bit of a higgledy-piggledy way home, but it worked out fine. Didn’t get charged like 15 quid in a cab. So all good.

Debbie: That was super

Katy: How’s your week been?

Debbie: Yeah, it’s been really good actually. was in Manchester on Wednesday for a VA versus arthritis funded consortium and there is so much research going on. It’s covering all MSK and inflammatory arthritis is part of that I’m a patient partner and a co-lead on one of the work streams that we’re looking at. And it’s just so interesting all the research that’s going on and that patients and people living with or impacted with inflammatory arthritis probably don’t know it’s going on. But there is so much and we will. This was just the launch of it and we will be getting people working on that consortium coming on the pod and talking about their work streams because I was actually one looking at blood monitoring for DMARDS which is disease modifying anti-rheumatic drugs, which we mentioned last week on the pod with the impact of alcohol and the livers So it is looking at that and seeing if there’s any evidence to reduce any unnecessary blood monitoring. So that’s the work stream I’m on. And there is like one on health inequalities, there’s one on menopause, there’s one on opioid use, and there’s one on chronic pain as well. So it covers a lot.

Katy: and how long is this going on for?

Debbie: think it’s five years. All the work streams are starting off now. So hopefully within a year, we will know exactly what research they’re actually working on. And we will probably need people living or impacted families and friends

Katy: okay that’s really good.

Debbie: with IA or MSK conditions part of the research, maybe focus groups So we will be getting, yes, as I people on those different work streams coming on talking about maybe what they need recruitment wise and hopefully giving out some results as well and dissemination because I think that is so important is that all this research goes on behind the scenes that no one really knows about. It’s how we disseminate those results as well and what they then mean for patients and for people in clinics as well. How does that actually change our lives living with it? So yes, it’s interesting.

Katy: That’s really interesting. I actually joined a digital patient advisory group this week, looking at the Parkrun Practice Initiative. So, where GPs use social prescribing to prescribe Parkrun to patients. So, I think there’s about sort of 2000 GPs across the country that are part of it and what these researchers are doing is just trying to understand how widely people are actually utilizing that service. So that’s quite interesting I mean it’s not inflammatory arthritis specific but I don’t know if anyone’s ever been recommended doing parkrun to try and help their joints because it can be I know we’ve talked about it before it’s really like part runs amazing because you can, have kind of part walkers. It’s not about running a race. It’s not a race.

Debbie: That’s the thing. It is just getting that exercise and being with a community as well.

Katy: Yes, it’s all about the community and even you don’t even have to run or walk. You could also, volunteer and be a marshal on the course because you’re still getting that social aspect, you’re outdoors. mean, looking at the weather today, that doesn’t always feel like something that you want to do.

Debbie: I know it’s pouring down. No.

Katy: But yeah, it was interesting. And it’s a friend of mine that’s the researcher. on the project. we’re just supporting in terms of looking at the question sets and making sure that the research is going to, lead to the right types of answers.

Debbie: Yeah, fantastic. Because I must admit, think Park Run can put people up, it is that run side, but actually you can walk. And I’ve done a few and I think that is probably something that the charity, Inflammatory Arthritis UK, we were actually looking to do is maybe not over the winter, maybe more in the springtime next year, is trying to get people together at park runs, but just walking. Giving you that social side, that fresh air, because we know that’s good for our mental health as well. And if you, even if you can’t do, because I think they’re all 5k, even if you can’t do that, it doesn’t matter, just go to the cafe.

Katy: It’s even, because my part runs, it’s like two and a half laps.

Debbie: Mine as well.

Katy: So when I’ve taken my son, we’ll sometimes, because he’s only seven, we’ll sometimes just do one lap and then we just check out because that’s all he can manage that day. So I think people do get put off and you do get, you know, it’s a real mix of people you’ve got. People that are quite competitive trying to get a good time. But if you start at the back with the people that are walking, you can do, I’ve been a walking volunteer before and honestly, it was lovely. just had a nice chat with a load of people I don’t know.

Debbie: Well, exactly. gets you out of house. It gives you that fresh air and you meet people that you probably would never have bumped into in everyday life. So, I think it is a fantastic initiative and it’s come of age. It’s 21. I didn’t realise that. I saw your Instagram and I was like, wow, 21 already. But yeah, congratulations to everyone involved though for how they’ve done that.

Katy: Park run does not sponsor our podcast, even though it may sound like that right now.

Debbie: Yes, well today’s episode is all about answering your questions because it’s been ages since we’ve done a full-on Q&A but we have had over the last couple of months some questions come through on Instagram and other social media platforms and through emails. So thought today would be a good time to actually answer those questions but just please do remember we are just answering from our lived experience, we are not medical professionals. But Katy, the first one came in from Instagram.

Katy: So, the first question was, how long did it take for you to feel symptoms were under some type of management?

Debbie: I really had to go back in my memory to remember, to try and think all the way back because we even, I can’t remember which episode, it’s a recent episode when we were talking about when I was diagnosed and started long-term treatment. It was 30 years. I didn’t realize that. So, when I was originally diagnosed as a child, again, because I was never put on any long-term treatment, I don’t think I ever got it properly under any sort of management because just waking up every day thinking what’s going to happen to my body today? Is it going to go into my hips, in my knees? Are they going to flare in my wrists, in my jaw? So it was just so uncontrollable that I didn’t find any way to try and control it. I think I just tried to ignore it. But when I was then put on long-term treatment, roll on 30 years, it did take a while because my whole body was in just such an overreactive state that all my joints were flaring. It was in my eye. And that was mainly the reason why to get on long-term treatment And it did take a while because I went on conventional DMARD on the tablet form. That didn’t work and then I did feel quite nauseous on that. So then I went on the injections and I was on a very high dosage of them, but then that made me become neutropenic. So, it killed off my white blood cells.

Katy: Right, that was going to be my next question. What does that mean?

Debbie: Yeah. So, then I had to come off that and try other DMARDs, but then I was allergic to one of them. And then it then, that’s what then took me to go into biologic treatment, which I am now on. And I think it took a while for that to properly get my immune system back to normality and some control. But then it’s near enough straight after that my daughter got diagnosed. So all the stress and everything with that, wasn’t a good time. But obviously that’s me and I’m very different. But for Katy, was yours quicker?

Katy: So, I was thinking about this before recording today because I was put on a conventional DMARD straight away. I’d say sort of after 12 weeks, I saw a huge difference and I did feel in myself a lot better. And I did start marathon training about eight months after my diagnosis. So, I mean, clearly in my joints feeling better. And I was able to run and move quite well. But when I really think back, I don’t think I actually was as well as I thought I was. So, I was on three DMARDs to begin with.

Debbie: Wow.

Katy: They introduced them at different points and I increased the dosage of one of them up until I think I was on about the maximum dose. And that did make me feel really sick and really tired. But it was helping, which is why they kind of kept on increasing it. I still, when I look back, I thought I was pretty well, but it wasn’t really until I started at Biologic. did I realize actually I probably wasn’t because once I was on a biologic, I really felt like the old me. And that was about three years post diagnosis that I started biologic. So, I answer it a little bit nervously because I felt much better and I could do a lot more 12 weeks after diagnosis,  sort of 12 weeks to seven months and like, after a year, I’d completed a marathon. I’d been in the opening ceremony of the Olympics, which is brilliant. But I wasn’t back to my old self. don’t know if you ever get back to your old self, by the way. But once it wasn’t until I started biologics, did I really feel much better in myself. But then once I had my son, I went back to square one. And again, because I didn’t start biologics until he was nine months, that was quite a long process in terms of then feeling better, essentially. So yeah, I say, the standard 12 weeks to six months, but then actually it was like really four years.

Debbie: Yeah, I think it’s a hard one.

Katy: It depends how you, what you feel about, because again, it’s really personal

Debbie: It is

Katy: Whether you feel your symptoms are well-managed and at different points, you’ll think your symptoms are well-managed, but then actually they will become well-managed and you’ll realise that actually they weren’t.

Debbie: Yeah, it might not have been. And I think it’s also, what’s your definition of managed, really?

Katy: That’s a really good question

Debbie: Because I’ve lived with pain for 30 years, so I just got so used to it that would I even now say that they’re managed? Because I don’t know any different from when it was previous to now. And yeah, I must admit, I think my eye is starting to flare a bit as well. Yeah, I think it’s again, it’s just so personal and your definition of manage is different because I can still, I still do things like today I still go and do lots of things and that, but you know, if I was fully well, if that’s a thing either, I don’t know.

Katy: Well, is anyone fully well

Debbie: It’s such exactly. It’s so hard and I think it’s just what feels right in you, whether you feel that you can go do things that day or not.

Katy: Yeah, and we’ve all got different expectations of what we want to be able to do.

Debbie: Exactly. Like I never want to go run a marathon. did when I was a lot younger, but I don’t now. I just want to just kind of just chill out a little bit. But that’s also age as well, probably. So, you know, it is, it’s very different. But then moving on to the next question, we saw, I think we covered this slightly in the relationships episode back, can’t be that’s back in February. That seems that was about six months ago now. How has your relationship with your body changed since living with inflammatory arthritis?

Katy: Yeah, that’s a good one because I think my body size has probably fluctuated throughout the disease. Cause I know I talked about it in some of the earlier episodes before I got diagnosed because I wasn’t moving as much. And I know they say it’s 80 % what you eat, 20 % your exercise, but I still think exercise plays a big part in weight management, even though it’s supposed to be only 20%. But it’s not always just about the way your body looks, it’s how your body feels. And I think knowing that my body can cope with all the effects of inflammatory arthritis, then I think I’m probably prouder than I’ve ever been of my body and what it can actually deal with.

Debbie: That is a really good way of putting it. I’d never really thought of it like that. Suppose I’m more probably not negative about my body just because it is what it is. Would I want to be thin? Yes. But it’s just realizing that because I have so much fatigue. My plan would be finish volunteering for the charity, go down the gym and go for a run and things like that. I just don’t have the energy to do that. Whether that’s a side effect from some of the medications, again, I don’t know, or just my body is just what it is now. But yeah, our bodies, we’ve both had children as well. Our bodies have been through so much. So actually we do need to be proud of what they’ve been through and what they’re gonna…us through in the next however many years as well. And yeah so that’s a very I really like that way of putting it. I don’t want to add to that I really like that.

Katy: go. I’ve left Debbie speechless.

Debbie: But yes, but moving on to the next question

Katy: Yeah, another question that’s come in, are there everyday items, gadgets or apps that make living with inflammatory arthritis easier? And I know we’ve both mentioned a few things previously, but do you want to take this one first?

Debbie: Yeah, I was gonna say the one thing that I do have and I found it the other day. I actually have a walking stick. I don’t know if I’ve mentioned this in the past,

Katy: I don’t think you have.

Debbie: but it’s an ergonomic one and it’s not like the crutches that they give you in hospitals because they are so bad on your wrists. So this one has like a spring at the bottom.

Debbie: So when you put it on the floor, it doesn’t jolt your joints so much, especially on your wrists and your elbows. So it’s actually really quite a comfortable one and it works quite well for my wrists. So I have to be quite…

Katy: That’s pretty cool.

Debbie: Yeah, because again with these diseases, they’re generally systemic. So, they affect both sides of your body. So, when my knees and my hips are flaring on one side, I know that not long after my knees and my hips on the other side will start hurting. So, I do have to have a stick just to also mainly to get up the stairs as well because bless my husband, I don’t think he’ll be able to carry me up anymore.

Katy: Fireman’s lift, everyone can be carried.

Debbie: But yeah, so it is just having that because again, I know that my left side will hurt if my right side is struggling more. So, I do have that just to kind of put off the inevitable, but I do find that really does help. In the kitchen, did have, apart from it’s now broken, a small blender. I could just, it’s like cutting the onion sometimes when your wrist is so bad. Just cut them quite big, chuck them in a chopper, blender, and it cut it very small for me. I do have a thing to open jars, but then I’m also quite stubborn and thinking how hard can it be to open a jar?

Katy: It can be very hard.

Debbie: It can be very hard, so then I just shout.

Katy: There is a certain brand of Bolognese sauce where the jar is exceedingly tricky for anybody. Yeah.

Debbie: really? okay. Yeah, must admit one of mine is as well. So, I do have a thing that you can put over it. It’s like a rubber thing. It’s hard to explain, but it’s like a rubber thing. I’ll bring it next time so people on YouTube can then see what it is. So it has two sizes. So obviously jars that are smaller, you put it on and then you just twist it around and it just grabs it for you. So you don’t have to then do the grabbing motion. You just then pull it and then it opens it. So I do have that.

Katy: Yep. It sounds like a clamp. You kind of put it on the top, it clamps in and then you can just twist it.

Debbie: Okay. think, probably does the same motion. It’s just a rubber, a very strong rubber thing. But other than that, again, we mentioned last week, and no, two weeks ago with the pain episode about splints, just supports for my wrist. I have them. And I do take my husband’s car when my left wrist is more painful because it’s an automatic, it’s lazy driving, whereas I do love a manual car. So, I do just nick his car. But…Other than that, I’m not too sure. How about you?

Katy: So, in the kitchen, so I’ve got a kettle where you press a button and the water comes out

Debbie: Oh really?

Katy: because in the early days, I mean, I’d have a hot tap, but they’re like a thousand pounds to install.

Debbie: just think I would forget and just burn my hand. I just am scared. No.

Katy: Yeah, yeah. And I think with kids as well, I don’t think they are, I kind of have a bit of health and safety issues with them. But I have a kettle where it’s just a standing kettle. You press a button and it feels like a cup of water. So, it is annoying if you want to fill a pan because you can’t just pour as much, you have to keep pressing the button and going, on. But it’s perfect for like a cup of tea, that kind of thing. I also have a very good husband. I’d say he’s my main gadget.

Debbie: one way of putting it yet. Actually I do have a cup of tea in the morning, he makes me a cup of tea.

Katy: I get a coffee every morning. Yeah. Yeah. I get it. he doesn’t like me touching his coffee machine. So, then again,

Debbie: Okay, And then also you have a son as well.

Katy: yes. And he, he can now make a mean scrambled eggs on a Saturday and Sunday. So.

Katy: Yeah, I’ve just got him a, I won’t say the brand of card, but he’s got a bank card now that we put his money on and he does chores. So, he can also be my gadget. So, makes me sound really, really lazy. And then I do have kind of like splints as well. When my wrists are bad. So, I’ll quite often if my wrists have been quite sore, if I sleep in the splints, I do tend to find the next day they feel a lot better.

Katy: Oh, and I do have bedding that is instead of like it, it zips and it just folds out. So you can put, you lay it out. and then you just put your quilt within it and then zip it in rather than having to, you like fight the bedding.

Debbie: Yes that is my, I hate doing that I just dread it.

Katy: And I hate making the bed. Whether I’ve got problems with my joints or not, it’s just, yeah, And I guess Hoovers I’ve always quite liked those lighter ones, but they’re sometimes not good. So, it’s a balance, isn’t it, of it actually picking up what you want it to pick up.

Debbie: Yes, I do actually have quite a good Hoover now, but that’s because the battery had to match his drill and all the tools that he wanted. But it is very light. That was my other thing as well, because I need to go and try them because some I just couldn’t move at all. When my elbows are sore, obviously, you know, with kids and the husband, they should, you know, help me out as well. But it’s just I just couldn’t do it at all. So, I had to get a very lightweight one. So yes, I suppose that’s other things as well. But do you use any apps at all? Because obviously apps have been a new thing I don’t because I Even though I should because my appointments with my rheumatologist and now once every year and so I probably should write down or put down somewhere where I’ve been flaring. But because when I get to like the next year, I forget but then I don’t want to be even though I run a charity and we do a weekly podcast I don’t want to be reminded every day about it, but that may be me, I just wondered what your thoughts were.

Katy: So, I’ve gone through phases of this and I can’t even remember the apps names now. But I have used apps to record things, but also I’ve just used a good old pen and paper, previous thing, written diaries and just noted down when things have been a problem or just written it in my phone notes so that when I go to an appointment, I don’t forget that I had a flare at this point and these are the things I couldn’t do because I think everybody finds this, you go to an appointment, how if you’re feeling all right that day, you just say you’re fine.

Debbie:  Yeah, and you kind of forget how you were as well, so yeah.

Katy: like five months ago, because I mean, when do I have appointments? I’m a bit lost to be honest, sometimes. I mean, obviously there’s all the digital genius stuff earlier in the year. So maybe it’s wise.

Debbie: Of course, yes. Don’t forget them. But yes, but I know there’s also, do you do meditation or anything like that? Because I must admit, I do, I don’t specifically do meditation, but I do have, he was an old boss of mine, and I just having him in my, when I’m kind of feeling slightly overwhelmed or just too stressed, I do just have his voice in my head just going, Deb, take a breath. And actually that’s just what I do. And I think because we mentioned this in a pods a few weeks ago that it’s just that breathing and just focusing on your breathing and that just literally just makes me put things into perspective. And it’s like, okay, I don’t need to worry about that now. I can do that later. But it just literally just slows my body down. But, and that helps with my joints a bit as well, but.

Katy: I did try one of the meditation apps once and I have tried to meditate before, but I can’t take myself seriously enough.

Debbie: That’s a good thing to have I think.

Katy: Yeah, I can’t do it. But I am going to something this weekend, like some evening spa sound bath thing. So I’ll tell more. I’ll tell more next week.

Debbie: Yes, and if it works for you as well, it sounds interesting. But our last question, and I think this is actually a really good one, is what is something you still hope to achieve or experience despite living with IA?

Katy: That’s big, isn’t it?

Debbie: Its deep one.

Katy: That’s a big one. I think, so something I would like to see, and this isn’t about me, this is about other people living with inflammatory arthritis. And I guess this comes back to why we’ve got the charity. But I think it’s just seeing people living with the diseases, being confident to do what they want to do. So it’s that driving confidence amongst the community and people not feeling like it’s a limitation to what they can do. You might not be able to do certain things and that’s fine, but it giving you the opportunity to do things you didn’t think were possible.

Debbie: Yeah, that’s a really good answer. I must admit I was thinking about this and it is pushing the charity forward that bit to really give people this, community and actually just realising that, as you said, Katy, so eloquently there, that there are things that you might never be able to do, but it doesn’t matter. It may be that you were never meant to do those things. It pushes you to do other things that you never realised that you thought you could do. And I think it’s just getting that resilience over to people as well. I must a admit I don’t think for me there’s anything that in my life that I want to go it’s because I would like to do more traveling but I’m just getting to this stage of life. Even a few years ago, I did want to go and live in London. My dream as a child was to live in London, work in Canary Wharf and own a sports car. I don’t do any of those things at all and I certainly do not own a sports car. But now I couldn’t get into a sports car. I have to have my SUV for my back. But now it’s just thinking, don’t butt that now. I just want some countryside and just trying to give people, as you say, the confidence and just seeing where the charity goes just to help and support people living with inflammatory arthritis and actually what I would like is for more people to be able to go into all the medications that are out there, not having those barriers, those funding barriers, all those different pathways. Because if there’s medications out there that could really transform people’s lives, they really should be on it. And it’s heartbreaking to see people might not have that DAS score, but they’re in so much pain. that’s, I think that’s something that, you know, we will take forward as well.

Katy: Yes.

Debbie: So, it’s been a great episode.

Katy: I’ve really enjoyed this one.

Debbie: Thank you, Katy for your really interesting answers. If you have different answers to these questions please do put them on our social media platforms we would love to hear from you but thank you so much for listening don’t forget we are now on YouTube and you can watch our episodes we are also on Facebook, Bluesky, Instagram and LinkedIn so please do comment like and follow and also rate the podcast wherever you get your podcast from it really helps with us with analytics and trying to get funding come through as well. Until next week where we have a new guest come on, it’s goodbye.

Katy: Goodbye.

Summary:
In this listener-led episode, Debbie and Katy answer your most-asked questions about living with inflammatory arthritis. From managing pain and fatigue to navigating treatment options like DMARDs and biologics, they share their real-life experiences, the challenges, the lessons, and the small wins that make a big difference.

The pair also catch up on exciting developments in arthritis research and patient initiatives, including Debbie’s work on a new Versus Arthritis-funded consortium and Katy’s role in the Parkrun Practice Initiative, which uses social prescribing to support community wellbeing.

This is an honest, relatable, and hopeful conversation for anyone affected by inflammatory arthritis, whether you’re newly diagnosed, supporting someone who is, or looking for practical ways to live well day to day.

Key Questions Discussed

• How long did it take to feel your symptoms were under control?
• How has your relationship with your body changed since diagnosis?
• What everyday gadgets or apps make life easier with IA?
• What do you still hope to achieve or experience despite living with IA?

Key Takeaway

Managing inflammatory arthritis looks different for everyone, progress takes time, and “well-managed” doesn’t always mean pain-free. With the right support, community, and mindset, it’s possible to live a fulfilling, confident life while managing chronic illness.

Resources Mentioned

• kettle
• Zip up bedding
• Jar opener
• Parkrun
• Inflammatory Arthritis UK – Connecting and supporting people living with IA.

Disclaimer: Debbie and Katy are not medical professionals. They share personal experiences of living with IA to build connection and community. 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/