Episode 8

Episode 8 Second Q&A

Intro: It’s our second Inflammatory Q&A. And Fairplay, you’ve sent us some brilliant questions. Inflammatory with Debbie Wilson and Katy Pieris.

Navigating life with inflammatory arthritis. Hello and welcome to Inflammatory with Debbie and Katy.

Debbie: This week is our second Q&A episode and thank you to everyone who sent in questions. Similar, to our first Q&A session, we’ve had a variety of questions sent in. So, we’ll try to cover them all, including what was Katy’s dream job. Next week, to coincide with World Book Day and International Women’s Day, we’ll be discussing who inspires us and what qualities do we admire in each other.

But if you have someone who has inspired, helped or even supported you, please do let us know who and why and we can do some shout outs in the episode. Contact us through our website, inflammatoryarthritis.org, and we would love to hear from you. But before we get stuck into the really tough questions of today, Katy, sorry Donkey, how are you?

Katy: Donkey is doing great, thanks Debbie. Donkey had a great day out yesterday. My son had an inset day, and I went to the Paddington Bear Experience.

Debbie: Oh, how was that? It was really, really good.

Katy: Really fun. This is what I love about parenting, is having those days where you go back to being a child yourself. So, it was a wonderful day and there was lots of kids, lots of fun. I won’t say too much because people should go themselves if they’ve got, I’d say, children between the ages of, it’s probably kind of two to seven. I’d say my son’s erring on the side of maybe he felt he was a little bit too grown up for it. You know how they get into that stage of not being sure whether they can go to things or not. Because it was an inset day, not the holidays. There was a lot of younger kids there as well. Okay. But I had the best day, that’s all I can say.

Debbie: I want to go. My children are way too old. So, I might just have to, can I borrow your child again?

Katy: Borrow him. He actually really, really enjoyed it. It was just at first.

Debbie: What’s your favourite Paddington film?

Katy: It’s got to be Paddington in Peru or whatever it was called, the most latest one. And we went to Peru yesterday. We had to go, we had to go and find, we had to help this man find some Peruvian oranges because the kind of whole experience is centred around Marmalade Day.

Debbie: Oh, okay.

Katy: But they’d run out of marmalade, not marmalade, sorry, Peruvian oranges. And he had to go back. I can’t remember Paddington’s Aunt Lucy had to go back and make marmalade with Aunt Lucy’s machine in Peru.

Debbie: Wow. I really thought you’d gone to Peru then.

Katy: Okay. A bit extreme in an hour.

Debbie: My favourite film is the second one. I just love Hugh Grant in it. I think he’s absolutely brilliant. Okay. So yes, yes. A bit of Daniel Cleaver. Yeah, not bad.

Katy: How’s your week been?

Debbie: Yeah, it’s been, it’s been actually been really good week, this week, even though it was half term and everything. But I have, I don’t, I don’t think I’ve mentioned, and I think when we do have a full episode on parenting with inflammatory arthritis, my daughter, well, both of them were registered as young carers when I was really ill a few years ago. And my daughter, my youngest, is now the vice chair of young carers in Hertfordshire.

And they had their conference last week. And so she was up there on stage talking to everyone, all the young carers that were there. And I just think they’re such a forgotten part of society. They do an amazing job of looking after family members who obviously need care, whilst trying to do schoolwork and just be a child as well. They just really do such great work. And so I’m so proud that my daughter is, yeah, vice chair.

Katy: That’s amazing. That’s such a nice outcome of something that could be quite challenging. So it just shows that actually, the challenges we all face, whether it’s you as the patient, or those around you, it can bring something kind of incredible can’t it to everybody’s lives.

Debbie: Oh, it really can. Because, you know, she was going through a really tough time, you know, worrying about going into school and worrying so much about me. Obviously, it broke my heart all the time, just seeing how anxious she was about leaving me.

But yeah, as you say, you know, just seeing her now, her voice, she has this presence, and she can really talk about her experience. And again, it just resonates with so many people out there. So yeah, she does. She does great work. So yes, as very one proud mum, shall we say. And the charity seems to be going, you know, from strength to strength as well.

And I think, you know, it’s very clear that the questions we’ve had come through, yeah, really again, resonates with so many people.

Debbie: So, shall we get on with the questions? I think we should. So, the first one we’ve had come through, is from a lovely lady called Tamara. And she was diagnosed with rheumatoid arthritis last year. She started on a DMARD, and also steroids as well, which I think is the usual first point of call for her medication. She came off the steroids, and then unfortunately she couldn’t walk. And so, they’ve upped the dose of her DMARDs. But that DMARD didn’t work, and now she’s on another one, and with having steroid injections as well. But her question is, what has been your journey with medication? What has worked for you over the years? And do you have any advice for her? It’s quite tricky, I think, to offer advice in terms of medications, because I think it’s very personal, isn’t it? What medications work for each individual. My journey started in quite a similar place. I actually refused to have steroids when I was first diagnosed.

Debbie: Why was that?

Katy: It was my own kind of, I guess, prejudice against steroids. What I’d heard about them, whether it’s, you know, people taking them for bodybuilding, which is stupid, right? Because it’s completely different. But it’s just that what you have in your head, and also reading up about sort of how it can affect kind of your face shape, and things like that. So a lot of it was very much aesthetic reasons that I didn’t want to take them.

However, having had steroid courses throughout my journey with inflammatory arthritis, I would probably, if I went back to the start now, I would probably have a course of steroids just to try and help with that very initial part, because the DMARDS do take at least three months to take some form of effect. So, I started with the three most common DMARDS. And throughout my first year of diagnosis, it was a case of increasing that dosage throughout that first year, until we got to a point where a lot of my inflammatory markers had come down, and my daily pain had changed.

And I was also put on some strong painkillers as well. So it was quite a mix. And it was a sort of constant kind of going up and down through that journey and sort of trying different dosages of the different ones. And then it wasn’t until I started having conversations of wanting to start a family, that I then went down the route to know they are considered a DMARD, but the biologics.

Debbie: Just to explain, biologics are DMARDS as well. But biologics target different parts of the immune system, whereas conventional DMARDS, the ones you mentioned before, Katy, they target just the whole of the immune system just to tamper it down.

Debbie: My journey with medication, again, quite similar to yours, Katy, when I was put on long-term treatment, I was put on, again, a conventional DMARD along with steroids. I did have to go on steroids. I was in so much pain. But I get it. Even now, my daughters can show me photos of when I was on steroids. I had that horrendous moon phase. I put on weight. It was just awful. But for me, it’s just having two kids running around. I had to take something and I would have done anything to try and get rid of some of that pain. But then the DMARDS that I was on, I actually became neutropenic. So, I had no white blood cells. It kills your white blood cells. So that’s what happened. And I caught a cold, and I couldn’t fight it off. I was in bed for like two weeks just because of these medications. So, then I was then put on another one, but I was allergic to that one. And then eventually, I was then put on a biologic DMARD, which has worked, fingers crossed, but I know I’m now getting antibodies to it, which is quite frustrating.

Katy: How do you find that out?

Debbie: Because I’m under two hospitals, it was my eye hospital that did, because they could see my hands. And we even have a question on this as well. My fingers are just generally so swollen. Put it this way, if you think of King Charles’s fingers, that’s kind of what mine look like. And so, he was there and he was just like, your medication, I don’t think is working for you. Let’s do this antibody test. And so he did. And then that’s when I then found out that I do have antibodies to it. But for me, it’s kind of working for my eye, not so much for my joints. So, this is a balance that I have to have because unfortunately, I wish, hopefully things will change in the future, that you could then be on say two biologics. Because it could then work for your eyes and for your joints as well. So, I do have a rheumatology appointment, hopefully in a couple of weeks, if they don’t cancel it. And then I will speak to my rheumatologist then and see what the plan is for the next step of the medication.

Katy: So, all of our journeys with taking medications are really different. But I think something that’s worth thinking about is that sort of psychological impact of being on long term medication. I know myself, when I first started taking all of these pills, I would look at all the medications that I had for the week, I would put them into those Monday, Tuesday, Wednesday, Thursday, Friday, what I classify old people medication pillboxes, so I wouldn’t forget to take them. And I just remember I once got all my meds out on the table, and it was bonkers, kind of what it looked like. And I can remember my sister and my husband laughing about, I must be rattling as I walked down the street. And it’s not something that anybody wants to feel like that they’ve got all of these things in their bodies.

But I think once you can see them taking effect, and you can feel the difference in yourself, hopefully people all get to that place. Then you can see why you’re taking them because it enables you to do sort of day to day activities. But that initial shock is horrid.

Debbie: Oh, completely. And I think, I know Tamara wanted some advice. Now, all I will say is, we get it, we’ve been there. If the medications, you know, the ones that you’re on now, fingers crossed, they work for you. But if they don’t, you have to speak to your team. There are so many more medications out there that are coming on the market as well that are available. So, please do just speak to your team. And hopefully, you know, we can get you on medication that works. And hopefully the research going on out there as well can take away trial and error on the medications. We need that error to be taken away so we can be on targeted treatment straight away. But fingers crossed. And Tamara, please let us know how you’re getting on.

Katy: Shall we move on to the next question?

Debbie: Yeah.

Katy: Shall I pick up the question that we’ve got from Candice? Yes, please do. So Candice has sent in, hi, I’d love to know more about anyone’s experience of hand joint damage, deformity specifically. Has anyone had successful surgery?

Debbie: That’s a really good question. I haven’t had surgery as yet.

Katy: Neither have I.

Debbie: Yeah, I have had. I’ve had many joint injections in my wrists. Have you?

Katy: Yes, I’ve had quite a lot of steroid injections in my wrists. And I’ve had all the steroid injections in your bum to get the general overall body effect.

Debbie: Yes. Do you know, my worst one was I had it in my wrist and then I had to have one in my elbow. So I had to put my whole arm behind my back so she could do my elbow and it really hurt. I feel quite thankful that all I’ve had to have is my wrist. Yeah, it really did hurt a lot. But it did work for that kind of short time. Obviously, steroid injections don’t work long period of time. So yeah, but my daughter also had injections in her wrist. But in a way, she was obviously not lucky to have. But children get gas and air or when they’re really tiny, they go under general anaesthetic. I would have loved gas and air. Oh, why can’t they do that now?

Katy: Oh, I love gas and air. It’s like the best thing in the world.

Debbie: But I’ve never had it. My daughter loved it and it was just like great for her. But yeah, getting back to obviously the question in hand, literally. You have mentioned, Katy, previously that you have had hand therapy. Are you worried? Because I am very worried in the future that I will have to have a hand operation. Are you as well?

Katy: Yes, it’s definitely something that I’m quite fearful of. Because I think people see your hands, don’t they, on a day-to-day basis. It’s something that you don’t cover up. So, it’s kind of, I don’t know, there’s something. And getting back to what we talked about a couple of weeks ago, when you search specifically rheumatoid arthritis, you see lots of deformed hands, which definitely makes you quite scared about what the future might be. Now that I’ve got osteoarthritis in my wrist and one of my knuckles, I’m definitely quite worried about what that might look like, whether I’ll have to have my wrist fused, I’ve heard people have done.

So, it’s all that and what that means in terms of what you can and can’t do in the future. So, it’s something that I’m quite keen to do whatever I can now to make sure that my hands are in a good position. So, what we’re dealing with is the fear of the future and trying to deal with what we’ve got now.

Again, I think this comes also back to the medications question, bringing that one in as well. It’s what works now, great, but we don’t know how long it can work for as well. So yeah, I think again, that’s why I don’t plan. I don’t want to know the future. I just try and live in the moment. But anyway, let’s on to the next question.

This has come from Lynda. A question for your Q&A podcast. How best can families show their support? It’s always asking if you’re okay, more annoying than saying nothing.

Your thoughts, Katy?

Katy: Such a tricky question, because I personally think as a family member, you potentially can’t get this one right. I think it probably comes down to maybe just having that conversation with the person about what do they need and what are they looking for in terms of support from those nearest and dearest to them. I myself cannot stand the question, are you okay? Because you ultimately, you don’t want to pity parties. You’ll quite often just say, I’m fine even if you’re not. I don’t think that question really works to actually get down into what that person actually needs. So it’s more things like, is there anything you need? How can I help you? What can we do to support you? Do you need someone to come to an appointment with you and be your listening ears? Because for me, one of the things I really struggle with is actually taking on board what people are talking to me about and remembering what that actually means and what I need to do next.

Debbie: Yeah, no, I completely agree. I’ll come from this from two angles. I always did always ask my daughter if she was okay. She always used to turn around at the end and go, mum, you are being so annoying. Can you not ask me that question? But that was a guilt. I just felt so guilty of her being in the pain and I knew what pain she was in. So that was just complete guilt. For me, again, I think you’re right, Katy. It’s just having that conversation actually. What do you want from me as the family member? There are things people can do. Go and educate themselves about the disease. Because when my daughter got diagnosed, she had some comments from family members and I was livid with what she was told.

Someone said, oh, you’ve got dodgy knees too. And someone has osteoarthritis and turned around and said, oh, my arthritis is way worse than yours. And it’s just like, you’ve just proven you know nothing about the disease. So, actually, go away, educate yourself, even if it’s just on the NHS website. Just read about, say, what juvenile idiopathic arthritis is or rheumatoid arthritis or all the other types of inflammatory arthritis. And then if you do have questions, ask the person and say, actually, Katy, I’ve got a question about rheumatoid.

Is it okay if I talk to you about it or even take away, is it okay. When you’re ready, I’d love to ask you some questions about how you live with it and then how we can support it and support you going forward. I think that’s the way for someone who’s just been diagnosed and what they can do.

Katy: Yeah, so I think what you’re saying there is education is the key word here, isn’t it? That often people come from this position of kind of fear or ignorance because they haven’t actually taken that time themselves to understand what that person’s even been diagnosed with. They just make their own kind of stupid assumptions completely.

Debbie: So yeah, so I think it’s just having, once you’ve educated yourself on that and then just asking the questions when someone feels ready to. So yeah, so again, I hope that answers that question. It’s a really good one. Shall we, on a lighter note, shall we hear, I think we have a voice note come through. Shall we hear from Iain?

Voicenote Iain: Hi, my name’s Iain and I’m ringing in about the podcast. I think it’s fantastic, really enjoying it. My friend’s got inflammatory arthritis, and she thinks it’s the best thing, really resonates with it, connects with what she’s thinking I’m going through at the moment. I’m ringing up about a bit of a strange thing really. It’s about, do you have t-shirts? She loves the idea of getting a t-shirt that says, hashtag, fuck it, land. Have you got some? If so, how can I get one? Great stuff. Keep it up. Love the pod. Thank you. Bye-bye.

Katy: What a great question. Definitely. Well, I want one.

Debbie: I do as well. If anyone’s a designer, please get in touch and help us design some t-shirts.

Katy: And actually, that leads me on because I’m running a 10k on the 23rd of March, which I am doing to help raise money for Inflammatory Arthritis UK, because I think what I spoke about at the start of the year is sometimes you can’t always say, run a marathon. I’m definitely not in a place to run a marathon. So, what I’ve decided to do for this year is break that marathon down into four parts and enter four 10ks this year to kind of keep myself motivated. I hate to do this, but quarterly sounds like I’m at work. But kind of keep myself, motivated throughout the year and run a 10k every three months. That works, doesn’t it? It’s not quite a marathon because I think a marathon is 42k, but it’s 40k. Who cares? Okay.

Debbie: You’ll do training. So I’ll cover it. That’s amazing. Well, yeah. So no, please do get in touch and sponsor Katy. How about we do one light question, but one serious one first.

On social media, we’ve had lots of people comment that everyone has a cure for arthritis. Not. I think you’ve had them as well, Katy.

Katy: I have 100%.

Debbie: I think everyone always does have their cures for inflammatory arthritis. And I think if there was a cure, we definitely wouldn’t be doing this. But what we’re going to do in a few weeks time is do a whole episode on the most obscure comments that people have said about whether it cures or even helps. So please, in a couple of weeks, do send them in so we can de-myth them all, I think. Brilliant.

And on a lighter question, Katy, what was your dream job?

Katy: Well, I had many, many dream jobs growing up. I wanted to be a professional tennis player. I wanted to be a bin lady because I’d read a book about a girl that helped her dad on the bin round or whatever it is. And she like jumped over all the bins. You know, that was fun. But I think my all-time thing that I definitely wanted to do, and I used to practice in front of the mirror, making, drum roll please, a Tracy Island.

Debbie: A Blue Peter presenter.

Katy: Yes, that was my absolute dream. If I could have been a Blue Peter presenter, I would have bloody loved it. You know, jumping out of a plane, going places. I don’t know.

Debbie: I can totally see you doing that. You’re so adventurous that actually, yeah.

Katy: Or Challenge Annika. Oh my gosh, that brings back memories.

Debbie: Challenge Katy. Well, let’s see if we can get Challenge Katy commissioned, shall we? That would be a fantastic, I’d love to watch it.

Katy: Just don’t put me in a Lycra jumpsuit.

Debbie: But you’re in Fuck It land, you have to. Oh yeah, yeah, yeah. It all comes back to that.

Katy: How about you?

Debbie: My dream job has come from watching Neighbours, Kylie Minogue as a mechanic. That’s what I wanted to do. It’s like, great. You know, Lara Croft in an overall. Amazing. So that was, I think that kind of got me into my love of cars. And then when I was then in my early 20s, and when I was then pregnant, I had this recurring dream when I was pregnant, that I was the fourth presenter of Top Gear. Now the Grand Tour, which obviously no longer exists. I’m gutted.

Yeah, me and the boys, how cool would that have been? I think they needed a little Lara Croft in that. So that would have been amazing. I have actually met them all. And they’re lovely, lovely people. So yeah, so that’s what I wanted to do. How different life turns out.

It does indeed. It does, yes. But now Richard Hammond is single. So, you know, my kids are on the case.

Katy: So we’ve got our next celebrity.

Debbie: That brings us back to square one. Katy, what celebrity would you want to sleep with?

Katy: That’s for my ears only. Right, so serious hat on, if I may. I think, thinking back to all the questions that we’ve had today, I think there’s a key theme coming out of all of this. And that’s about coping. And whether that’s sort of how I can cope, how those around me can cope with my diagnosis and my future, and how can they cope and help me kind of cope moving forwards and living well with these diseases?

Debbie: Yeah, I completely agree, Katy. It is tough what we go through. The ups and downs of it as well, because I think sometimes, we do try to mask when we’re really well, that actually we don’t have these diseases. And it does obviously come back and kick us in the arse sometimes as well. And it’s then also for the family members to realise that it is up and down.

And, you know, when we’re doing okay, just get on with our lives sort of thing. You know, don’t keep then asking, are we okay when we’re well? Because we don’t want to be reminded all the time with it. And I’m very conscious of my daughter having to go through this as well, which is probably, you know, I’ve said this before, I don’t plan for the future because I’ve got no idea what my future holds.

And I just do live for the moment. And I think, Katy, you do that really well as well. Yeah.

Katy: And so on that, actually, with your daughter, how do you help her cope and think about the future?

Debbie: That’s a really good question, because I think she does it so well herself. I’m in the background panicking about when she goes travelling. How is she going to, she can’t take her medication with her, you know, making sure that she’s got enough painkillers and anti-inflammatories with her. And then she wants to go travelling again even more next year and then go to uni. I try, I can’t think of that at the moment though, because that will stress me out. And that might then cause me to flare as well.

So again, it’s just balancing it all. So again, I just try to live in the moment, but we have such a close relationship that actually if there is something that she’s not too sure about, or if she’s flaring or something, she comes to me and we do just chat it out. And sometimes it’s just giving that hug, that gentle hug sometimes, that says so much more than words.

Does your husband do that to you, Katy, when you’re kind of feeling, does he know when you’re feeling a little bit off and just go,

Katy: it’s probably because I’m a total arsehole. We’ve talked about that before. Yes, we have.

Debbie: I’ve forgotten that, but yes, we have.

Katy: And I’m a bit of a funny one, depends on my mood, whether a hug will work. Oh, okay. Otherwise, it’s just, just leave me alone.

Debbie: Again, that’s just your way of coping though. And I hope that this podcast as well is giving people that message that this can help you cope with life. We’ve been there, we’re going through it. We’re living every day with these diseases. And so, you’re definitely not alone and we get it.

Thank you so much for listening. Please do leave a review and rating wherever you get your podcasts from. Don’t forget to sign up to our newsletter, inflammatoryarthritis.org for upcoming episodes, research and IA news.

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And until next week, it’s goodbye. Goodbye.

Hosts Debbie and Katy, go through your questions in this second Inflammatory! Q&A episode.

Next week on Inflammatory! the hosts will be talking about who inspires them to coincide with World Book Day and International Women’s Day. Please do send in details about who has inspired/supported you and the hosts can do their first shout outs in the next episode. You can send them in and via voicenotes here https://inflammatoryarthritis.org/contact-us/ so you can be heard on the podcast.

The first question Debbie and Katy discuss is one about their own journey with medication. They cover the psychological impact, feelings of fear and denial about starting long term medication and how it can be frustrating to find the right medication straight away.

They then go on to discuss how can family support people living with IA. Is it more annoying to keep asking if you are, ok? The conversation covers what not to say but can family do anything right in this situation?

A question was asked about hand deformity/surgery and again this picks up on emotional side of what the future could hold. Steroid injections are covered and how Debbie felt when her daughter had her injections and that Debbie’s fingers are similar to that of King Charles III. They also briefly cover that everyone has a comment on a cure for IA, and that the hosts will cover in this in a future episode, but please do send in your most bizarre/obscure comments you have received as the hosts would love to hear them.  

They end with a few humorous questions one about T-shirts, and the other what their dream jobs were. Tracy Island is a clue for Katy and how did Kylie Minogue inspire Debbie?

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