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Episode 66: RA Questions, AI Answers: How ChatGPT Can Help
31 Plays1 month ago
Living with Rheumatoid Arthritis comes with more questions then answers—and sometimes, it’s hard to know where to even start. In this episode, we explore how ChatGPT can be a powerful tool for asking the tough, nuanced questions about RA that we may not always feel comfortable bringing to the doctor or our loved ones.
But we don’t stop there. We also dive into one of the most emotionally complex parts of living with a chronic condition: explaining it to others. Whether it’s your boss, your child, your partner, or a skeptical friend, communicating what RA really feels like—without overwhelming or under explaining—can be a challenge.
Tune in as we test out how ChatGPT can help us frame these conversations, offer supportive language, and build bridges of understanding with those around us.
Resources:
United States Arthritis Foundation: https://www.arthritis.org/
United Kingdom Versus Arthritis: https://versusarthritis.org/
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Transcript
Introduction and Personal Connection
00:00:00
Speaker
Welcome to the Wounded Healers podcast.
00:00:10
Speaker
I'm Janessa. And I'm Amy. We were brought together by our shared wound of an autoimmune condition in our early 20s. This is a place where we explore our wounds with our listeners and guests who recognize the challenges of being human in hopes of helping all of us let the light in.
AI's Role in Managing Rheumatoid Arthritis
00:00:28
Speaker
everybody welcome back to the wounded healers podcast it's a beautiful day we've been chatting we're in a good mood um it's just a vibe so hopefully this episode will be a vibe as well yes i'm here with janessa of course Oh, I'm so happy to be back here with you guys. Truly. and Yeah, it feels like a total reunion every time we come to record.
00:00:53
Speaker
um But yeah, I was just telling Amy, we had a few listeners reach out. And I just want to thank those of you who reach out to us because it means the world to us. We love to hear what you are getting out of this and also what you want to see in this.
00:01:09
Speaker
We're one here to express and bring our light to the world, but also to get feedback and to hear about what you guys are looking for so that way we can give that more direction so please continue to reach out I just love it ah adore it yes um so today's episode is going to be something a little bit different i kind of inspired by my work which is really boring but in my work i do a lot about e-commerce um and managing that with clients and stuff like that but
00:01:45
Speaker
ai has been a hot topic on that for the last like six
ChatGPT's Assistance in Flare-up Management
00:01:49
Speaker
months. So I'm talking about it all the time at work, exploring it a lot at work. And that's obviously gone into my personal life as well. So I now feel like I couldn't be without chat GPT a lot of the time.
00:02:03
Speaker
But most recently I've been dealing with a flare ChatGPT really helped me out with it. So I had a really busy week at work, I was going away for a weekend for a family commitment and I was in so much pain guys, like the good old days of pain where I was like limping, couldn't hold a glass, like that kind of good old days of pain.
00:02:28
Speaker
And I was like, I really need to get a handle on this to manage all my busyness. So I said to chat GPT, this is what I've got going on I have arthritis and it's really bad, especially in like these parts of my body.
00:02:41
Speaker
How can I manage everything this week? And it just gave me the most solid suggestions, stuff that hadn't even thought of before, ah but also just helped me like map it out. So, cause I feel like when you look at these articles or,
00:02:56
Speaker
you look at like people's Instagrams for inspiration and it's often out of context, you know, it's like a list of like what to do in a flare or a video of along those lines.
00:03:07
Speaker
But what ChatGPT was doing was like, when you wake up, do this. In the middle of the day, try this. Like when you get home from work, try this. And really brought it to life for me.
Question: Can AI Answer RA Queries?
00:03:19
Speaker
So, we are gonna today ask questions about rheumatoid arthritis to chat gpt and live react to what it says i'm so excited because as you know if you've been an avid listener amy actually told me what chat gpt was in an episode so the first time i ever encountered it so anyway i've been changed through this tool so i'm excited to see what it says
00:03:46
Speaker
um i love that that's so funny that i brought chat gpt to you and you literally like live in silicone i know it's it's literally embarrassing like legit half half the things that happen with tech with me here i go i live in the capital of technology and i don't even know how to use this like google present button so anyway bear with me i'm just a girl you could you I always think this though, in the area that you live, you could just like work in a cafe for a day and you could legit do like insider trading just from like what you pick up in that coffee shop, I imagine, of like overhearing people's meetings or listening to conversations people are having. Yeah, turn into real spy over here, watch out. Wasted on you.
00:04:35
Speaker
Wasted on you, girl. Okay.
Comparing Symptoms and Experiences
00:04:39
Speaker
The first question going to ask is, what are the 10 things I should expect to deal with in my lifetime with rheumatoid arthritis?
00:04:50
Speaker
This could be interesting because and Janessa both about eight years in. Yeah, more than that. 2016. More than that. 12 years almost. so oh well twelve years no 12 years oh my god maybe I'm more than I think I'm still eight anyway anyway so we've got a bit we've got a chunk of lifetime spent with it so we can say whether we agree with what chat GPT says on the 10 things and then I'm sure we also have things to come oh I also have to rectify real quick I think that really is nine years I just did some like yeah I was gonna say no but honestly it feels like 100 years it feels like 100 years
00:05:33
Speaker
Yeah. Janessa, you're literally turning 31 this weekend now. I keep forgetting too. I'm like, am I 32 or am I 30? Zach's like, you're in the middle of 31. wait, no. You're going to be
Adapting Lifestyles for RA
00:05:44
Speaker
32 this weekend. No, no, no. I'm going to be 31, but I kept saying I was going to be 32. But Zach's like, no, babe. I was like, okay, thanks. No.
00:05:51
Speaker
In your 30s, it just turns into like you genuinely don't know how old you are. yeah You truly don't. I've been experiencing it. um Okay, so number one, straight out the gate, unsurprisingly, chronic pain and fatigue.
00:06:06
Speaker
Yes. Solid. Great. Correct. Ongoing joint pain, stiffness, especially in the morning, and general fatigue, even when inflammation is controlled.
00:06:17
Speaker
But that I would disagree with. Because this is saying you can get these things even when your inflammation is controlled. And I have had a solid three years without stiffness in the morning or ongoing joint pain or general fatigue.
00:06:36
Speaker
So incorrect to chat GPT, but it can obviously can happen sometimes. Yeah. I don't know. i still wake up and my hands are like kind of hard to close in the mornings, but then it like wears off. um As far as like fatigue goes, I get that a lot actually towards mostly towards my menstrual cycle though, like, cause I'm already also i'm really low on iron so i think that adds to it but yeah so for me a little bit but not nothing like the first two very flaring years yes yeah okay good perspective the second one flare-ups oh yeah
00:07:15
Speaker
Yeah, they do happen. Periods when symptoms worsen, sometimes with little warning, correct? And also just nonsensical. You're like, you feel like you've had a great time and you've been living well and then suddenly everything hurts. You're like, why?
00:07:30
Speaker
Mm-hmm.
00:07:33
Speaker
Okay, no, this is the downer.
Navigating Medications and Mental Health
00:07:35
Speaker
Why is this? This is such a list of downers. I don't know why. I thought it was going to be. It's honest. I thought was going to be like. We're not always going to have downers. like But it's true. like Okay, you know the pamphlets in the US in the rheumatologist's office are all these women smiling. And it's like, do you have rheumatoid arthritis? And they're just smiling. And I'm like, no. like This isn't real. This is false advertising. So anyway, we're not false advertising.
00:07:59
Speaker
Part of it does kind suck. So yeah, um but we'll get to good stuff. We just got to get through this. Yeah. Okay. Joint damage and deformity. yeah welcome my life If not well managed.
00:08:13
Speaker
yes, yes. Yeah. This true fact. Janessa has experienced it. I do not have a right elbow joint anymore. That is normal. It does not open or close. And I don't have my um middle joint. It's like almost fully gone here on my middle finger. It's the normal one.
00:08:31
Speaker
Yeah. And then my toes too. didn't realize that has that. Has that happened in like the recent years? Your index finger. Has it? Yeah. And my toes. I have some joints that are no longer in my toes, but those don't hurt me as much.
00:08:45
Speaker
But yeah, mine's like rampant. Has been rampant. But I'm feeling pretty good now. have Yeah. Okay. Changes in mobility and function. Difficulty with fine motor tasks.
00:08:59
Speaker
Yeah. Okay. can Can we quickly just bring up, like, first of all, like, boo to whoever created the caps on top of medications. Because yeah truly, when you're in a flare and you have to open this, like, child lock situation, it's miserable. I'm always like, please help me.
00:09:16
Speaker
Please. Yeah. I'm the same with, like, bottles of water. Yes. Yeah. Like, I can't, because they're obviously sealed for hygiene reasons. Okay. that simply means I can't open them yeah
00:09:30
Speaker
um yeah so that absolutely that stays um and walking longer distances yes I get extremely tired I went for a walk with um my brother and his fiancee have started like walking a random person's dog at the weekend like borrowing my doggie um which is a thing in the UK that sounds a bit weird, but it's like ah a platform where people share their dogs.
00:09:54
Speaker
ah But anyway, so we went for a walk with these dogs. It was a three hour walk, which is quite lot, but also like not, like it's not really that bad. um And I was in so much pain, like so much hip pain. I was written off for like three days. So yeah, Chachi PT's right about that.
00:10:15
Speaker
um medication side effects yes having long-term medication like methotrexate or by biologics do you say that biologics biologics yeah may cause fatigue nausea liver effects and increased infection risk i'm just kidding but um truly i do have to say like It can be, and I know we've said it before, so I won't give it too much time, but it can be so frustrating to find a medication that works
Therapy and Lifestyle Adjustments
00:10:45
Speaker
so well. And then out of the blue, suddenly your body does not cooperate with it anymore. it can be so frustrating. And ah we, we heard from a listener recently about this, who's going through that. So just a shout out to them, you know who you are, but we are thinking of you because that is a frustrating part of this
00:11:04
Speaker
it sucks to have to be like a chameleon and constantly change and be like okay next thing this didn't work yeah and never knowing where you stand like thinking you're finally getting on with stuff and then for the goalpost to just change is really hard It's why number eight is mental health challenges. yep um Yeah. What to expect. Depression and anxiety are more common in those with RA, which is an important factor to say more common.
00:11:37
Speaker
It doesn't mean but any of these things are guaranteed. but yeah, naturally, it's harder to be happy when you're in pain. Yeah, seek therapy, please.
00:11:49
Speaker
Even if you're not... having RA or any autoimmune staff if you're a listener i'll just seek therapy that's great huge fan um making life lifestyle adjustments number seven yes adapting your career hobbies or household routines to protect joints and manage fatigue Yes, I think so. I mean, I haven't really adapted my career.
00:12:16
Speaker
I've just plowed on ahead and then we'll deal with the consequences later. um and you've adapted your career, but not because of your RA, would you say, or um do you think? No, not necessarily because the RA, but that is a part of it of like why I chose this direction right now. Yeah, that's true. But I think mostly actually for just for mental health. Like I was working like a corporate job um and, ah you know, it was pretty, pretty good. I was doing really well there climbing the ladder and it just could have.
00:12:52
Speaker
It could have kept going if I wanted it to, but truthfully, i was so exhausted and what I've learned is if I am exhausted and stressed out, then my body will eventually let me know. Um, so yeah, I think it just, it's hard to make those changes just to say like to, to give away stability and to give away like really good financial standing to take on like a new career path is for anybody ill or not is incredible, I think. And, um,
00:13:27
Speaker
Yeah, so if you're able to then kudos to you. But if you can't, don't beat yourself up over It's not like all of us can make that 180 shift into something that might be more on schedule with our bodies.
Self-Advocacy in Healthcare
00:13:40
Speaker
So, yeah yeah, don't get too down. 100%. Well, survival is number one. Like, just try and survive. And then if you can change anything else for the better, then that's cool. But, yeah, you've got to take care of yourself first.
00:13:52
Speaker
And financial stability is a big part of that. Yeah. um Okay, number eight, again, another joyful one, increased risks of other health issues. just kidding.
00:14:05
Speaker
It's so cheerful. but ah We're going to actually ask ChatGPT later on probably what other illnesses are common. So we won't we were ah stay on this too long. But it's just made me laugh that at the end of the sentence it says, possibly lung involvement. You're like, oh, thanks. Your lung could get involved.
00:14:30
Speaker
um Navigating the healthcare care system. Yeah. Okay. ah ongoing appointments with rheumatologists gps that's in the uk wait do you call them gps in america um yeah we know what that means like general practitioner in general yeah we usually call them like general medicine as well so yeah okay Physios and specialists.
00:14:56
Speaker
Oh God, what helps? What helps being your own advocate? oh Yeah, ah easier said than done. Easier said than done. Yeah, have like a well-trusted friend or family member if you can or someone who can be there for you because navigating the healthcare care system is in the US is a cruel, cruel joke.
00:15:16
Speaker
um And it sucks when you're already in so much pain or you're already so depleted in your energy. So just have someone there who can just really be a ride or die for you, honestly. So they can take notes and ask the questions that maybe you're too overwhelmed to take.
00:15:33
Speaker
So that'd be my advice there. That's good advice. I always put my mom with me to everything at the beginning. Now now I have to go on my own. But at the beginning, she was really helpful. Yeah.
00:15:45
Speaker
and okay number 10 thank god chat GPT decided to throw something good in here 10 periods of stability and hope RA is unpredictable but many people achieve long term remission and good disease control with modern treatment so yeah that is that's the first positive of that episode yeah we'll take it a good note to end it on um Okay, the next question is, how can I simplify what rheumatoid arthritis is for people who don't understand it? And I'm really intrigued about this because there's nothing worse than when you're just diagnosed and you don't even know what's happening to you.
00:16:34
Speaker
ah you know how to spell it. And you've got to tell your boss what's happening. And you're like, I'm not sure, bro. I'm not sure bro. That's so good. ah So let's see what it says. Do do you want to read it, Janessa? Can you see
Explaining RA to Different Audiences
00:16:51
Speaker
it on your screen? Just so someone else is speaking. Bear with me on this. You all know how I am reading out loud.
00:16:57
Speaker
So I'm getting her to read. So it says RA is an autoimmune disease where my immune system gets confused and attacks my joints. Like it thinks they're a threat.
00:17:08
Speaker
It causes pain, swelling, stiffness, and fatigue. And some days I can feel mostly okay. And other days I might struggle to do even small things like button my shirt or walk comfortably.
00:17:19
Speaker
It's not the same as wear and tear arthritis, like older people get, um, Yes, I guess there's no other way to say that. ah It can affect people of any age and it doesn't um just impact joints. It can also affect other body parts like the eyes, the lungs and the heart.
00:17:36
Speaker
There's no cure yet, but with the right meds and support, I can manage it and still live a full life. Just know that even when I look fine, I might be dealing with a lot underneath. What a cool, yay, chat GPT. Bang, bang on.
00:17:53
Speaker
ah So, yeah, I do know a lot about that the eye stuff because I have to get my eyes checked from RA stuff. So I know that a little a lot of times people with RA or other autoimmune conditions also can get really dry eyes. That's what my doctors have made me aware of.
00:18:11
Speaker
um As far as lungs go, I do know there are some conditions that can develop from RA, but also I've heard of like costro, I'm going to say it wrong, but costroconjitis, which kind of feels like there's like a like a pain in your side, like in your lung, um and it can feel like weird to breathe. But some people who have RA get that, and I think it has to do with the lining of specific organs are similar to the linings of joints so the body can attack those doesn't mean that yeah just does yeah yeah that's the same i think that's that's the eye thing the the juice the juice of your eye is made of the same stuff as the juice of your joint yeah technical terms here guys technical time i justice join juice joint juice yeah
00:19:04
Speaker
um So yeah, I think that's spot on. I wouldn't really change any of that, to be honest. Like, especially I think the cooling out of the other parts of the body is really essential when talking to people that don't know about RA because people do still just think it's the osteoarthritis and they don't.
00:19:24
Speaker
I think cooling out that it impacts your other organs makes it seem as serious as it is. yeah And people treat it as such. Yeah. yeah i' one hundred i agree I also like that ChatGPT has said would you like a tailored version for kids or colleagues or friends wait can we try the kids one real quick yeah because I've always wondered I want to have kids someday you know and I wonder like how do you tell your kid that like when you're flaring up
00:19:51
Speaker
ah Okay, here's a kid-friendly way to explain RA. I have something called rheumatoid arthritis. It means my body gets a little mixed up and thinks my joints, like my hands, knees, or feet are sick, even when they're not.
00:20:09
Speaker
So my body tries to fight them, which makes me feel sore, tired, and stiff, like I've done too much running, even if I haven't. Some days I feel okay and can play or move around fine.
00:20:22
Speaker
Other days I need to rest more or might move a little slower. But don't worry, it's not something you can catch and I'm still me. I just need to take medicine and take care of myself a little more.
00:20:35
Speaker
No stop, I'm crying. about to cry. it That's so beautiful. Good job, Chachi. No, that's beautiful. And it's important to tell kids it's not something you can catch because yeah when i I briefly worked at a middle school and some of the middle school students wanted to know why my like I had kind of like a wrap on my arm at that time was like very much flaring up.
00:20:58
Speaker
and they're like why do you have that you know and I was like oh I have an autoimmune disease and I just remember this group of girls going and then like backing away because they didn't know any better and they were not trying to be rude but all they heard was like disease and I think people can be like oh I don't want that you know i was like don't worry ladies you can't catch this like it's all inside and they're like okay no it' was like okay So it's important to tell kids that they just don't know. They don't mean any harm by it.
00:21:26
Speaker
there Yeah, of course. Yeah. And yeah, beautiful, beautiful explanation. Okay. Let's do... Sorry, I've just seen.
00:21:38
Speaker
Would you like a version with a visual or story analogy? Like, my joints are like doors that get rusty. my gosh. Funny. oh Funny. Yeah. um Okay. so the next one...
00:21:53
Speaker
Should we do, how can I, i don't want to talk, I don't want i'm going to miss that one. What should we do? I feel like my medical team aren't treating me properly. What should
Question: How to Handle Medical Team Challenges?
00:22:02
Speaker
I do? Yeah, please. Because that's a, yeah, that can happen a lot.
00:22:09
Speaker
Firstly, I just love that ChatGPT always acknowledges, like, he's he's, she's, like, I'm really sorry you're feeling this way. It's frustrating and even disheartening when you're not being heard. Like, just love it such ChatGPT is more human than any of the humans I think.
00:22:28
Speaker
um okay do you want to read these ones sure so the first tip it gives is trust your instincts your experience matters so it says if you're in pain not improving or you feel dismissed your concerns are valid you live in your body and they don't and it's okay to speak up Oh, chat GPT. That's on fire. have nothing to add That's fantastic.
00:22:48
Speaker
Yeah, because you can feel some people, including myself in this, you guys know this about me. i do have my... issues with authority.
00:23:00
Speaker
So if someone and is in a position of authority to me, I just want to please them. And I feel like doctors, I consider them to be people in authority to me, or I definitely did when I was first being diagnosed, because I was like 23, and they were all 50.
00:23:13
Speaker
But um now maybe not so much. But yeah, it's definitely if you feel similar to that, it is okay and necessary to speak up for yourself. And if you're in the US, you are paying for your doctor. So you think of it as in you're employing your doctor.
00:23:29
Speaker
So while they are somebody who has gone to school and they're professional, you are employing them. So if you are not satisfied with an employee for reasons that cannot be fixed, it's time to let them go. And that's how it can be with doctors too.
00:23:43
Speaker
I'm going to find a new one. So the second thing it suggests is document everything. says, keep record of symptoms and flare ups, medications and side effects, appointments and what was said, any concerns and unanswered questions.
00:23:58
Speaker
And then it says, this helps build a clear picture and gives you the confidence when advocating for yourself. Yeah. And Amy created this awesome tool.
00:24:09
Speaker
And I know need to haven't talked about it in a long time, but I absolutely love it. um She created this like PDF where you can track your symptoms and you can even put it on the body. There's like a body outline and this is super helpful.
00:24:21
Speaker
And if you roll ah roll up is the most unprofessional sounding thing. If you come to a doctor's appointment or roll up, whatever you want. to a doctor's appointment and you have those forms ready and you're like I've been feeling pain here and like the questions that Amy asked are intentional I think it says a lot it shows your care team like I'm not messing around like I really um really care I've been tracking this yeah yeah we'll put that in the show notes too Yeah. Make them fear you.
00:24:50
Speaker
You're like, I got the papers. And then the third thing it gives us is be direct with your current team. And it says ah at your next appointment, try calmly saying something like, quote,
00:25:05
Speaker
I don't feel like my symptoms are being taken seriously and I'm still struggling. Can we review my treatment plan or consider another opinion? And then it says sometimes doctors need a gentle nudge to take more active role.
00:25:18
Speaker
You guys, this is so spot on. Yeah. Like again, in the U S it's different UK, in the U S you are imp employing your doctor. And if you say something like you wouldn't fire someone without warning them. Right.
00:25:31
Speaker
That would be wrong. mean, and you can, but I don't think that's right. So you can say that to your doctor and just say, I'm not feeling like my needs are met here. um That's totally real.
00:25:42
Speaker
They can reevaluate. Yeah. yeah And I'm going to do this next one because it's specifically relating to the UK because obviously ChatGPT knows I live in the UK, so it's doing that. But just a reminder that we have the legal right to a second opinion within the NHS.
00:26:00
Speaker
and Because I think because obviously our healthcare is free, which is not free, we pay for it with our taxes, and but that's a different, it's time for a different episode.
00:26:11
Speaker
um But they kind of make us feel like it's like a charity and we we should be so grateful that we're getting free healthcare, care but like we should just take what we're given, right? It can feel like that sometimes.
00:26:23
Speaker
So yeah, we have a legal right to a second opinion. You can request this through your GP or through your rheumatology department and you don't need to justify it. In fact, ChatGPT told us exactly what we need to say.
00:26:36
Speaker
I'd like to request a second opinion to explore whether other treatment options might help me. kind regards your name that's it no excuses no explanation just a demand a simple polite demand and honestly like also having worked briefly in the medical field for like three years your doctors and their nurses and their medical assistants are they like time is of the essence so if you are direct yeah short and right to the point it is more appreciated than you know so you don't need to fluff you don't need to make anyone feel good they're there to make you feel good so you send that send that all through
00:27:15
Speaker
Yeah, feel like we've kind of covered the next two already in what we've said. um So then that the other one that I think is worth mentioning is reaching out to patient support charities. So again, it's only given me the UK one, which is aversus arthritis, which they are.
00:27:31
Speaker
amazing like i'd recommend signing up to emails and stuff anyway and just keeping abreast of their goings-on i'm sure we can add one do you know off the top of your head there's arthritis.org um and those are just specific to each state you live in in the u.s but they have a lot of helpful tips they have a really good podcast you can listen to as well and they sell products here and there so if you find something you like get for your birthday holiday um But yeah, other than that, there's also the Mayo Clinic and certain certain organizations, depending where you live and where you go to see your doctor, have a
00:28:10
Speaker
kind of nice relationship to the Mayo Clinic and if you're looking to really get into what's going on and you want to read some medical papers you can usually get those through your doctor's office or request them um again you have to know to request those so you can always ask worse that happens is they don't have that ability at that time and they just say they can't do it so that's not too bad
00:28:34
Speaker
Nice. And then the the final one is push for updated tests or imaging. and And I just feel like in America, you just don't even need to do this because they're making money off you when you have these things done. So they're literally like every time you go in, they're like, have an x-ray, have an ultrasound, have a blood work. That's my impression because you've had way more like x-rays and stuff than have in the last decade or so.
00:28:56
Speaker
and But in the UK, they obviously keep that shit under wraps because it costs them money, not you. yes, ask if you think if you are suspecting something, if you are suspecting you have some degradation that's not being picked up or whatever.
00:29:16
Speaker
um yeah ask and again it's given us the script i love how inept chat gpt thinks for others literally telling us word for word what we need to say but so helpful um can we repeat some tests to see if there's ongoing inflammation or damage i want to make sure nothing's being missed yeah you can't argue and that that's polite okay the next one i'm gonna ask is what causes rheumatoid arthritis because you know obviously we don't know is is the answer but let's see what chat gpt pulls out in a kind of concise way and while it's writing that in like 0.0 seconds can we just say that i i feel like i get this question a lot do you get this question a lot amy when you tell people have ra for the first time Yes.
Genetic and Environmental Factors of RA
00:30:05
Speaker
It's like one of those, like within the top two questions is like, oh, is it genetic? Is it, you know, like how did you get it and it's like, I don't know. You know, it's like it's like a combination of things. And then I'm like, oh, I don't have all day. Yeah. Yeah. And the it is hard really to explain.
00:30:26
Speaker
it because it's like i i know it's a mix of genetics and environmental factors but it's like what does that actually mean you know yeah yeah so let's find out yeah number one genetics you can inherit higher risk of developing ra there certain genes like hla a DR4 are more common in people with RAMs. They've obviously tested people and realized that more of us have this specific gene. So that's tell. But having that gene doesn't mean you'll get it. It just increases the risk.
00:31:09
Speaker
um Number two, environmental factors. These may switch on the disease in someone who is already genetically prone. So again, that's a great explanation. The whole switching on wordage makes a lot more sense to me. and Smoking.
00:31:26
Speaker
So that, I think about that often. I'm just like, cause I used to smoke quite a lot in my teens. Yeah. Yeah. It's like, that was stupid. What if it caused, you know what mean? On those cigarette packets, they're not writing may cause RA.
00:31:41
Speaker
no Not that, not that that would have stopped me. do they put pictures on your cigarette packets? Hey, we don't have those in the US. I've only them in countries. you still get the, you still get that good, good branding. Yeah, they're still branding and they're just like enjoying. And you're like, okay.
00:31:57
Speaker
I mean, there's like a little risk disclaimer. We're going to make more money out of this. But it's so small. Okay. Okay. They're see you in the hospital in a bit. And then we'll get your money then. But no, crazy side note, but for American listeners in the UK, they've actually passed a bill so that eventually you will not be able to buy cigarettes anymore.
00:32:23
Speaker
what So every for every year that goes past the legal age of buying cigarettes is going to change to eventually no one's going to be able to buy it.
00:32:36
Speaker
Wow. Which is pretty big, pretty big deal. But it's okay because literally everyone just vapes now. Like more more people just vape than smoke. So I'm not really sure. Obviously that is potentially better in the short term, but God knows what it's going to do to everyone in the long term. But also, okay, wait, how are our French people doing out there?
00:32:56
Speaker
I feel like they... Oh, they're still puffing away. Puffing away like chimneys. Yeah, obviously, Edouard's family is French. And yeah, they we were like at a family event with toddlers running around. They were like smoking. they it's but but the It's terrible. i'm so It's terrible because they always make it look so sexy and fun. And I'm like, no, it's not. No.
00:33:18
Speaker
But like there's something about the French. I don't know what you guys have. Yeah. some Charisma. It's insane. Yeah, aura. Unmatched aura. Yeah.
00:33:28
Speaker
Okay. Uh, so another environmental trigger is infections. We know this like viral or bacterial infections, hormones.
00:33:39
Speaker
I didn't know this. Oh, gosh. ChatGPT has just answered in another one of the questions. is more common in women and symptoms often change during pregnancy or menopause.
00:33:49
Speaker
I was going to ask ChatGPT why are women more adversely affect versus men, but I guess they figured out it's to do with our hormones. Great. Great. Thanks.
00:34:03
Speaker
Love being a woman. and Stress and trauma. And it's interesting because ChatGPT has pointed out that this isn't a direct cause, but it can play a role in triggering or worsening symptoms. Yeah.
00:34:18
Speaker
um immune system malfunction your immune system normally protects you from infections in our okay that's not that's we've already been through that that's not really a cause well i guess it is the cause just your immune system malfunctioning and no one knowing why bonus it's not your fault oh my god can't you be here RA is not caused by anything you did and it's not contagious.
00:34:45
Speaker
It's a mix of things you can't control. Genes, environment and biology. And even with all the right choices, people still develop it. oh That's so important for people to hear. like truly. And because also I hear of other conditions people get and they're like, but I'm a yoga teacher. i only eat vegan. Like I'm so like...
00:35:05
Speaker
so healthy how did this happen like yeah it's really nice to hear from a third party that is not even a person who's very kind that it's not your fault like truly like don't don't hate don't hate yourself over it truly like it does no good to you yeah thank you for the reminder chattu liti chat Okay, next one. This is a big one.
00:35:31
Speaker
Is it hereditary? Will my children have it? Because this is one of the first things I asked.
Question: Is RA Hereditary?
00:35:42
Speaker
Thank you.
00:35:42
Speaker
ChatGPT. It's a very thoughtful and understandable question. Here's the honest answer. Oh my God, guys. I'm going to have to strap in. oh is b It's being honest, which I feel like it means it's not going to be nice.
00:35:57
Speaker
Okay.
00:35:59
Speaker
RA can run in families, but it's not directly inherited. Instead, what's passed down is a higher risk, not a guarantee.
00:36:11
Speaker
So what are the chances our children will get it? The average person has about 1% lifetime risk of developing r RA, which just seems shockingly low considering how many people I know that have it. But obviously that's that's a symptom of the fact that I have it. So we've got to know them. like I'm sure I've never actually met anyone else.
00:36:36
Speaker
Actually, that's so funny to think. I've actually never met someone else outside of like Rheumatoid Girls and our like community. But I've never like met someone on the street with RA or like at work.
00:36:48
Speaker
Yeah. To be fair. I recently met someone whose daughter has RA. But yeah was like just out of function. And I was like, yeah, I have something called r And just like, oh my gosh, my daughter has that. And I was like, I'm sorry. Yeah.
00:37:01
Speaker
But also like, hi. but I'm here. you know um Okay, so if you have RA, your child's risk goes up to about 2 to 5%. there's still 95 plus chance they won't get
00:37:18
Speaker
pla chance they won't get it Good odds. If both parents have RA or there's a strong family history, the risk can be a bit higher, but it's still far from certain. and So of course, those environmental factors we just spoke about before, extra important to get your kids not to smoke if you have RA and you have a child.
00:37:49
Speaker
gotta keep them away from those cigarettes especially in teens and young adults exactly when we were doing it um infections and gut health imbalances i guess you can't really stop your kids getting infected but you can maybe force them to have a really diverse diet to support their gut yeah microbiome oh totally could have a gut health focus at home.
00:38:16
Speaker
Everyone, you'd be a very popular house for the kids, other kids from school to come around to. it. And you're making them beetroot and kale. Yeah, make it star-shaped. I'm just kidding. Hormonal changes and possibly early life exposures to these environmental toxins. So just...
00:38:34
Speaker
Yeah, I mean, i guess it's important. You don't want to be psychotic about it because you're gonna push your child away, make their life more difficult. You don't want to do that, but i guess just keeping it top of mind. and So if you're thinking about having kids and you have RA, an approach to take, encourage a healthy lifestyle as we've just discussed.
00:38:59
Speaker
know the early signs of RA. So this is a really interesting point because it was very new to my family. So where I probably went for about six months as we've discussed in the, a few episodes of just ignoring it slash not treating it, getting on with things. Whereas if we had known, you know, as soon as your kid complains of their joints hurting,
00:39:27
Speaker
You can ship them right off to the doctor and get locked into the treatment very early. It's good to know. um And most of all, again, the don't feel guilty. You didn't cause this and your children are overwhelmingly likely to be healthy. Yeah.
00:39:46
Speaker
So...
00:39:48
Speaker
We'll be fine. Maybe. Who knows. But also a friend of mine gave me an interesting perspective on this a while ago. When I was, i had doubts.
00:40:01
Speaker
They're less and less now. The older I get now, I'm like, no, I really want to have kids. But when I was in my early mid twenties and I was really thinking like, is it the right thing? more i was having a real moral dilemma on like, do I want to bring a child into the world if there's even a 2% chance this could happen to them. yeah And she said, you would be the best mom for someone who is going through this because you have the exact experience of it.
00:40:33
Speaker
And there's no one else that would be able to support them better than you. um So you can kind of see it as strength, it's a strengthened position to enter to motherhood with having RA because of all the the wisdom that comes with it And she also said at the time,
00:40:51
Speaker
everyone deals with shit in life like everyone deals with if it's not illness it's like failure or yeah whatever any number of like negative things and having a mom or a dad if there's any guys listening who have experienced failure and pain and
00:41:13
Speaker
struggle you're going to be able to support them better through that so just thought that was a very sweet perspective of her to share with me yeah Yeah, that's beautiful.
00:41:24
Speaker
Yeah. Um, okay. Oh, this is fun. These, by the way, if I, if I sound like I'm surprised by these questions, it's cause Edward basically came up with all of them somehow last night. He was just on fire. Um, so I'm now excited again, reading them cause I'd forgotten about them.
Understanding Remission in RA
00:41:44
Speaker
Let's find out what chat GPT says about what percentage of people with RA go into remission.
00:41:52
Speaker
Great question and one that offers real hope. Yes.
00:41:59
Speaker
So what is remission in our aim? Because this is important to note as well. like In RA, remission means the disease is no longer actively causing inflammation, pain, or joint damage.
00:42:12
Speaker
People in remission may still have occasional symptoms, but the disease is under control. And that's different to point out because i cancer remission is like, there's no more cancer in your body. yeah yeah Which is different, obviously, to the experience of remission with RA.
00:42:30
Speaker
Okay. Ooh, okay. The answer depends on several factors, especially how early and how aggressively treatment begins. But here are general statistics.
00:42:43
Speaker
With early aggressive treatment, which I think most people achieve these days, remission rate is 50 to 70%. Great.
00:42:55
Speaker
Let's go on the 70% side. um If your has established itself and got a grip on your body, um the remission rates are less, so 10 to 30% reach remission, though many achieve low disease activity.
00:43:19
Speaker
If you're using biologics or JAK inhibitors, that must be something that's not available on the NHS. I've never heard of that. Do you know what that is Yeah. Okay. and um Remission rates can rise 40 to 60 in some people. So I guess they're calling that out because those are kind of newer treatments that are stronger and better.
00:43:42
Speaker
um and drug free remission is very rare only five to ten percent but it is possible and so that's fun i'm not going to go through with the listeners the factors that improve their chances because they would have heard that yeah for a long time um but when i was reading that i just thought about another question that i haven't prepared but let's ask chat gpt maybe at the end what and new treatments are looking to cure ra because there are loads yeah well not loads but a few
00:44:22
Speaker
And they've cured it autoimmune diseases in mice.
Emerging Treatments for RA
00:44:25
Speaker
So it's only a matter of time until they're curing us. Yeah. um Okay.
00:44:33
Speaker
What else can we ask?
00:44:37
Speaker
What are the holistic practices I should build into my routine to manage flare-ups? Yeah. I think that's good. Or do you think we've all been through that a a lot of times now? We've probably been through it, but there might be some new listeners.
00:44:50
Speaker
So let's just, let's revisit Or there might be some new ideas from TrackGPT that we just haven't thought of. Okay. First one's looking pretty familiar, but I guess it's one that works.
00:45:05
Speaker
Anti-inflammatory nutrition. I'm sorry, everyone. and I bet you're sick of hearing that. Sick to death of hearing it.
00:45:15
Speaker
Oily fish, leafy greens, berries, turmeric, ginger, nuts, and seeds. I'd like to add peanuts are inflammatory so okay and don't eat the peanuts especially the ones you get from Costco that are roasted and salted they're so good Maybe eat little bit. And drinking water.
00:45:41
Speaker
Gentle movement. No, I'm not impressed with these. I'm not impressed with these Yeah, these are kind of redundant, I would say. Basic, yeah. Sleep hygiene is important.
00:45:52
Speaker
Yeah. No, it's important. It's just like overdone. Yeah, we've heard this. Yeah. ah In the world. true and if you're here and you're newer to this you're like i don't know about this it's not overdone look at our other episodes we have like a nutrition episode we have one of sleeping and like products that can help when you have ra so i promise you there's way better content for that in there yeah what we'll get from going over this real quick Yeah, we've also done a whole um episode on nutrition because obviously we have the spiritual nutritionist here with us live. So yeah, we have 100% covered all of that. So go check it out.
00:46:33
Speaker
Yeah, check, check, check it out. Okay. I mean, shall we just do should we just find out about the new treatments? Yeah, I'd like to hear about that.
00:46:44
Speaker
That's a very hopeful and important question. While there isn't a definitive cure for rheumatoid arthritis yet, new treatments are pushing the boundaries closer to long-term remission.
00:46:57
Speaker
here
00:47:00
Speaker
Yes, okay, cool. So, JAK inhibitors, small but powerful pills. Oh my God, I love that it's doing taglines for them. Yeah.
00:47:13
Speaker
These are targeted synthetic DMARDS. Like I'm not even going to attempt to, oh can you just do some of those? Oh my gosh, she can do So that one I recognize is Zell Jan, which I was on.
00:47:28
Speaker
And that was actually a like just pill um oh i cannot olamate and uh revoke i think they pronounce this one as those the ones i i have tried zeljans that was interesting and if you were in the u.s during covid you know there is a lot of debate about zeljans and it became very hard to get them because people are using them help with covid okay so all right people got kind of put on the back burner for a minute and I know, it's not crazy. I was like, come on.
00:48:01
Speaker
Yeah, yeah, let's not even also so even talk about COVID. They block Janus kidneys, this is so embarrassing, pathways inside cells that lead to inflammation.
00:48:16
Speaker
They are effective even for people who don't respond to older biologics and they're taken as a pill, not an injection. EG, infection, blood clots.
00:48:27
Speaker
I mean, what medicine doesn't come with those two risks? But you will be carefully monitored, which you will be on basically any RA treatment, to be honest. Okay, the biologic therapies tailored for your immune system.
00:48:44
Speaker
These include anti-TNF drugs like Humira, Enbrel, IL-6 blockers and B-cell therapies. More precise than older drugs, they target specific parts of the immune system.
00:48:58
Speaker
That's really nice. Newer biologics are being developed. my God, sorry, I'm burping. It's okay. the I'm belching. Older biologics are being developed that are even more targeted and safer. So that sounds really good.
00:49:15
Speaker
Yeah. Um, remission is a real goal. Yeah. The biggest shift isn't just new drugs. It's a new treatment strategy.
00:49:25
Speaker
Treat to target, aiming for remission or very low disease activity, not just managing. Rheumatologists now aim to get the disease under tight control within the first three to six months after diagnosis.
00:49:40
Speaker
Well, okay. so Like nine years in.
00:49:46
Speaker
oh They know more now. They know more now. Amen to that, truly. um Okay, research into immune reset or cure pathways. So this is what I was alluding to earlier, the T-cell therapy.
00:50:02
Speaker
um So these are not available as treatments yet, but studies are in progress. T cell vaccines that teach your immune system to stop attacking your joints. Whoa.
00:50:14
Speaker
Sounds like a cure to me.
00:50:18
Speaker
immune tolerance therapy to retrain your immune system, like how allergy shots work. So that's, yeah. So my friend is a vet and loves animals, but is allergic to cats.
00:50:32
Speaker
So she did that whole course of treating her cat allergy, although she is she's still allergic to cats. So, yeah. That's why it's a immune reset cure pathway.
00:50:47
Speaker
ah Gene therapy to adjust or silence the faulty immune response. Oh. and Which is like reprogramming your genes. Yeah, so insane. so Which I think that's, again, i'm I'm worried that we're going to be spreading more and misinformation. But I feel like that's...
00:51:06
Speaker
Yeah, we're going to – maybe we could do another episode. Maybe we should take some time to research these. Yeah. Yeah, I can't talk properly on these. Yeah. No. um Then gut microbiome research. So specific probiotics and microbiota transplants yes may one day influence immune balance in our I do know about this.
00:51:29
Speaker
What? It's already happening in Asia have you look this up. But it's – yeah. Yeah. But it's interesting. Look that up on your own. There's there's something called fecal matter transplants that they're doing. Do you know about that?
00:51:42
Speaker
What that is? that's That's poo. Yeah. So they take it usually from a healthier specimen and they actually... You're lying. They... put they insert it and it your body picks up some of the bacteria in it and that includes good bacteria but it has to be done very specifically like it is such a tested tested thing like you can't just take and put that in someone that would be really awful and gross like it's a ton of money and it's kind of crazy but they're they're doing it in asia already in parts of asia so you can look it up if you're interested there's documentaries it's very interesting
00:52:17
Speaker
That would be kind of iconic though, if the cure to RA is shit. ah
00:52:26
Speaker
yeah That's too funny. Oh my God, how fun. um So yeah, those are all in early trials, but some are showing real promise in mouse and early human studies. my God, the poor mice that are having other mice's shit shoved up for our benefit.
00:52:44
Speaker
But no, I think I'm definitely keen to do another episode where we look into those little bit more because it will build up my hope as well. We need a hopeful one. Okay. Precision medicine and biomarker testing. Tests are being developed to predict which drug will work best for you based on your genes and blood markers.
00:53:04
Speaker
Yes. This could help avoid the years of trial or error in finding the right treatment. Oh. Oh, I pray for that for any person going through this because that gets rid of so much doubt and honestly little T trauma of medical care and the medical system.
00:53:23
Speaker
And the hopeless feeling of trying everything and it not working. Yeah. Love. um Okay, bonus. ChatGPT has given us a little bonus. Integrative approaches are being studied too. Clinical trials are looking at how diet, stress reduction, sleep quality, and gut health affect RA severity. Okay.
00:53:44
Speaker
But they don't need to trial on that. I think any of us can tell them all about that. Anti-inflammatory diets, again, with an anti-inflammatory diet. Fasting, mimicking diets, and even medical cannabis are under investigation in some countries.
00:54:01
Speaker
So is there a cure? Not yet, but we're closer than ever to making remission lasting and drug free in more people. For some with early and aggressive treatment, RA becomes so well controlled that it feels like a cure. Okay.
Future Hope and AI's Support
00:54:17
Speaker
That's important to know.
00:54:19
Speaker
The next five to ten years, five to ten years, could bring true disease-modifying breakthroughs. This is, it's happening, people. Five years. We might not even be 40 and be in cure-like remission.
00:54:39
Speaker
ah like it. oh Would we like to stay updated with clinical trials or research newsletters specific to r RA? Okay. I can point you to some trustworthy ones. Well, do that and we will have a look at them and regroup next episode. Yeah.
00:54:58
Speaker
Wow. I feel like I learned a lot and we started on like a rough note, as we all know, but we ended on a really positive one. <unk> the ten here I think I can do that. i can I can keep going for that long. I think so, yeah. I can. It's okay with that.
00:55:13
Speaker
I'm here. um Okay, so I hope that was fun. And I hope it inspires listeners to just think about... how useful can when you're managing your illness. Obviously this was like fun information, but it can also, i don't know, you can ask it about if a doctor's given you a bunch of medicines and been like,
00:55:39
Speaker
help help me decide or why don't you decide ask chat gpt like what would work for me based on my lifestyle factors with the holistic practices get ones that are tailored to you from chat gpt like just any question you have when it comes to your disease ask chat gpt and see what it says and it will guide you i mean obviously and it's not a doctor so don't just literally take everything it says for bible as it says at the bottom chat gpt can make mistakes check important info so do you do that um but yeah lean on it use it let it help but share your burden with it i think is what i'm trying to get at
00:56:23
Speaker
Definitely. Oh, well, what a great episode. Thank you Edouard as well. um He was behind the scenes making this happen. So we love a supportive partner. We love it.
00:56:34
Speaker
Yeah, he asked, but he came up with basically all those questions, even the one which is like, why are women adversely affected versus men?
Conclusion and Gratitude
00:56:45
Speaker
Isn't that just, isn't he just a feminist icon for even thinking that?
00:56:48
Speaker
Or even knowing that or thinking it. I love him. Oh. Yay. All right, y'all. Well, this was a pleasure to be back, and I can't wait to research these more and actually know a little bit more what I'm talking about about those treatments.
00:57:03
Speaker
So we'll look forward to seeing you back here in about two weeks. And until then, remember to let the light in. Bye.