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Episode 68: The Future of RA: Medical Breakthroughs You Should Know
24 Plays8 days ago
In this episode, Amy shares the latest advancements and medical interventions on the horizon for people living with Rheumatoid Arthritis. While managing RA can often feel like an uphill battle, there is hope on the horizon. Tune in to hear encouraging insights, emerging treatments, and what these developments could mean for the future of RA care.
Guided Meditation for Chronic Pain:
https://youtu.be/Fdr-jK4XrrM?si=bfvpb6EAXh-FFMx-
Recommended
Transcript
Introduction & Personal Stories
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.
00:00:28
Speaker
hi everybody welcome back to the wounded healers podcast yay you're here we're here let's do it i'm so excited i say this every episode i'm like it's been forever but truly because we record a ahead of time and you guys hear it later it doesn't seem like forever for you but yeah it does feel like i miss you guys Yeah, how is everybody? How are you doing? How are you surviving?
00:00:58
Speaker
We are, me and Janessa are both at different stages of things and I've been flaring so bad, guys. the' I've had the worst flare I have had since 2018.
00:01:11
Speaker
being first diagnosed so I was diagnosed eight years ago um which again is crazy to think that that's how much time has passed and you guys know I've spoken about it a lot on here that I've had a pretty good ride of it you know obviously at first it was really hard but I've had I've responded well to a lot of treatments um I've had kind of lucky eight years and yeah i had something happen in my life which triggered a flare and it has been awful and it has brought me right back to like the beginning like I've been getting at the end of the day I've been limping like physically limping haven't been able to use my hands like Edwild's been washing my hair for me at times and it feels very like yeah just a little like touch of disability you know they're just like oh the RA is just like oh
00:02:11
Speaker
um I'm still here you're gonna have me for life so yeah i don't know it does it does make me when I'm going through things like this it does make me think of all of you that listen to us and the community that I built back with rheumatoid girls and how know what was also thinking the other day I wish Social media didn't make that switch to short form video content because that was 100% when I lost the interest and the will to post.
Social Media & RA Engagement
00:02:44
Speaker
I think i it was like in combination with, you know, i was getting older, the world, there was different things on my plate and stuff like that. But equally, it's just so much more effort to make a short short form video that I was like, I don't have that in me. Whereas back when I started Rheumatoid Girls, it was just...
00:03:01
Speaker
Just the little, do remember those little squares of just a quote? So easy to make. Put it out there. And yeah, just developed too much. I don't have the video skills, so um I do miss it kind of um but and don't have the time or the inclination to make videos but I do still check in on you guys and think about yeah think about that time and I follow a lot of other good creators now that do have the inclination to make short form video content and thank goodness for them because they've been keeping me inspired and looking at you know different remedies um
00:03:44
Speaker
I mean, obviously it has just come back to me getting more actual medicine, which is such another cycle for me is I'm like, um oh yeah yeah, this time when I flare, I'm just gonna like up the supplements, eat really healthily.
00:03:59
Speaker
and you always think about it like that. And then when i match when I've actually been flaring, I've been like, give me the drugs.
Natural Remedies vs. Medication
00:04:06
Speaker
Yeah, no, that's very that's really good to hear for me in some ways because sometimes I forget because I am in that kind of luckier area right now with flares where I'm i'm a little swollen, but I'm not flared up. Like it's not, I'm not feeling that the weight of, you know, like you were saying that that hint of disability is so real. yeah Like just feeling the weight of that and being like, I don't really know if I can write anymore. i don't really know if I can wash my hair. It's really, it just takes a toll on you and Yeah, it's it's good to be reminded of that because, well, I'm not going through that. That's still a very real thing for all of us here with with autoimmune conditions, especially RA. just, yeah, it kind of it just brings you back in a way that you're like, oh, man, like like, I really, I don't want to go through it again. But seeing the way you're doing it, you're doing it with such grace. And I'm sure our listeners are, too. So you guys are so strong. Thank you for for keeping it real.
00:05:00
Speaker
Yeah. yeah yeah like just yeah if you i guess sometimes you might listen to us and be like oh they're always talking about how they're quite good now and stuff but it isn't that isn't the journey and we've we have spoken and about this before like this disease and having a a lifelong dis-ease in your body isn't linear it's not gonna when it's never gonna not be there um And it is all about finding that balance and living with it, accepting it.
Pain Management & Meditation
00:05:36
Speaker
I actually did an unbelievable pain meditation the other day as well. That was all about, oh my God, i i it was one of those things where I think if I had... If you hear it on the wrong day, you'd be like, fuck this.
00:05:51
Speaker
But I think i was just on a, was just in a receptive state that day and I was like, oh my God, yes. So it was all about, um There's two elements to pain.
00:06:02
Speaker
Like there's the physical pain that you feel, and then there's the suffering that you attach to the pain. And that's your choice. Like it is your choice to attach the suffering and to accept the suffering like into your body and into your heart.
00:06:19
Speaker
And this meditation was all about feeling the pain, but letting go of the suffering. And it was very empowering. Yeah, that sounds amazing.
00:06:30
Speaker
ah When you said that, like the holding onto to the suffering, I literally just heard probably my inner self just be like, you do that. i was like, I do that so much. I'm really great at it. I'm like, oh, there's more suffering. Let me grab it.
00:06:42
Speaker
me take that. Let me take a little more of that. God, that's amazing. Is that something found like on YouTube or was it on an app? Yeah, it's YouTube and it's it's what by one of the like and proper arthritis charities, like um Arthritis Alliance, if that isn't one of them. But yeah, I'll find it and I'll link it in the show notes.
00:07:04
Speaker
and Because yeah, it is, it's a really, it's I think it's based off of, um you know, like Buddhist detachment type ideology all of that kind of eastern ideology where all all of our suffering we bring upon ourself right and it's only like the only reason we have suffering is because our life isn't the way that we imagine it should be basically it's like um and yeah it's just funny that that even goes down into in into pain but it's it's very it was very freeing for me to just acknowledge like you're making this worse for yourself by
00:07:42
Speaker
by letting this pain consume you. God. Yeah, I'm gonna listen to that. Yeah, okay, I'll link it, I'll put it in the show notes for anyone, for anyone that needs it.
Research on RA Risk Factors
00:07:54
Speaker
um Yeah, and that's it, only on the Wounded Healers can you come in seven minutes in and we're talking about severe pain and meditation and all that other good stuff.
00:08:08
Speaker
And I know that's what you're here for. ah So today's episode is going to be all about arthritis news. And I did think we should do something really cute and be like, you know, make me like an actual news anchor and be, but now I feel embarrassed and I don't want that. No, love it. It's giving like the Princess Diaries vibes, the shut up and listen show. Oh my God. Yeah, when Lily's like, shut up and listen.
00:08:34
Speaker
Yeah.
00:08:37
Speaker
That's so sweet. Oh, yes. um Yeah. Oh, my God. I love that film. That's just... I've just thought... I'm not sure ed was seeing that film and I might make him watch it with me because...
00:08:50
Speaker
It's time. It's such a classic comedy and timeless. um Okay, so yeah, so Janessa has been celebrating the independence of her country from my country, which to be honest hurts my feelings, but I do let her do that. mean, it's kind of rude. We did toss a lot of tea in the harbour. The party was whoa. Very offensive to me. Extremely offensive. and I think we need, and yeah, compensation for that offense.
00:09:21
Speaker
but We should all send over a tea to the UK. ah But because she's been having a good time celeb celebrating the land of the free and the home of the brain, I have been doing some research this weekend. So just guys get ready because this is going to be another one of those ones where we've like cobbled it together and we're talking about not very expertly about things.
00:09:46
Speaker
um But yeah, we're going to bring some arthritis news at you and I'm going to explain it to you. So it could be fun. I mean, I found some very interesting stuff.
00:09:57
Speaker
Who I didn't know how many news articles are published about arthritis, basically on a daily basis. Like, wow. Yeah, it was there was no short.
00:10:11
Speaker
There was yeah, there was no shortness of things to go through. So do you have anything to say, Janessa? I feel like I literally just spoke for 10 minutes. No, no, I'm so happy. I'm literally watching you as if you are a news anchor right now. I know you guys can't see Amy, but she looks amazing. And her background is like the Google background with all the cute books. So this does look like a news anchor right now.
00:10:36
Speaker
It's good. So I'm just here. i'm going to be the viewer along with our listeners. So I can't wait to learn some stuff. Okay, so what we're gonna do, we're gonna go through some new studies that we found that have some interesting results, not necessarily even about medication, like studies on people with autoimmune diseases and stuff like that.
00:10:57
Speaker
Then we're gonna move into some research on medication, which is kind of leading on from stuff we said, we talked about in our last couple of episodes. And then we are gonna go it's like the miscellaneous wildcard round at the end, which is just like some random shit that I found. So opening up the first study,
00:11:18
Speaker
Development and internal validation of a prediction model for rheumatoid arthritis. So this is a couple of people in China. This is another thing I've learned.
00:11:32
Speaker
The Chinese are studying rheumatoid arthritis like crazy. And they're not just studying people in China, they're studying on a global scale, but Yeah, I mean, I don't know. Maybe there's a ton of people in China with rheumatoid arthritis. I don't know.
00:11:49
Speaker
Or maybe, maybe it's actually just, I hope this doesn't come across as racist, but maybe it's just loads of Chinese people, like Chinese Americans that are forced to do a really good job in school and have to become doctors.
00:12:05
Speaker
Maybe that's what's happening. They're all Chinese names, but I don't actually know that it's from China. I will say, you know, that is one thing that really amazes me, though, like ah because land of the free home of the great. Yeah, we're not very good at grades.
00:12:20
Speaker
Some are some are. But, you know, every once in while you see someone who came into the country with their family and they're just yeah, and they're just doing so good. Incredible. So thank you. You know, with that said.
00:12:32
Speaker
Thank you for your service as a doctor because we need these articles. Yeah. Okay. so Help us. Yeah.
00:12:45
Speaker
I'm sorry for any offense caused just ahead of time. So the purpose of this study was to identify risk factors for developing ah RA and build a prediction model that can estimate a person's likelihood of getting RA.
00:13:00
Speaker
So this is good because... We are constantly talking about how we don't know there are things that people they think can be triggers, but this is a certified study of people that have it and don't have it, and how what they did before may have impacted their RA.
00:13:18
Speaker
So it was 432 participants, individuals. two hundred and sixteen ahra patients and two hundred and sixteen healthy individuals um matched by age and sex and they were all from Sichuan in China. So this actually is in China.
00:13:35
Speaker
So what they did, they collected data on their lifestyle and diet, on their environmental exposures, like living in damp houses. their health history, like past infections that they might have had, their genetic markers, obviously, and then they built a statistical model to predict r RA risk using the most significant factors that came out of that.
00:13:59
Speaker
and And then they validated that model with internal testing. So, These are the key risk factors that came out of this approximately 500 person study.
00:14:11
Speaker
Doing non-manual work like desktops increased your likelihood of getting RA. So that surprised me because I thought that was going to be manual work when you're, i don't know, putting your body through stuff, but it's actually like the sedentary, and it will get back into it a little bit more about why that might have been, well, no, I'll just tell you why that might have been now.
00:14:37
Speaker
They think because desk jobs cause so many cortisol spikes and state of chronic stress, um that I think they have really good research now that proves being in a state of stress for a long time does contribute to having autoimmune disease so I think that's probably where that came from like people in the corporate world their bodies aren't going about their day-to-day life in the way that nature intended. So that's causing disruptions.
00:15:12
Speaker
This one shocked me off the bat. I was like, no way. But then it explains it. Living in rural areas. Because I was like, surely it's much better for you to live in a rural area because health, wellness, outside, open space, fresh air.
00:15:31
Speaker
um But I think what that actually comes down to is you don't have as good access to food, doctors, medicine, that kind of stuff. So it's not about living a healthy lifestyle. It's about the stuff you miss from living in a rural area and not the stuff you gain.
00:15:50
Speaker
Yeah. Wow. Yeah. Sorry, guys. I'm coughing. That's not very good. first That's not very good for a newsreader. i like it. It's something real. Give us something real. um i diet high in meat and fish. Hmm.
00:16:12
Speaker
which is kind of opposite to what, at least what we get told. Fish supposed to be very good for you, but apparently not according to these 500 people in China.
00:16:23
Speaker
um Living in a damp environment, again, that's not really news to me. I see a lot of people on the old um Instagram talking about black mold and stuff like that.
00:16:38
Speaker
Yeah. Yeah. I feel like when I lived in Washington state, was very damp. Yes. And that was the worst I ever had my RA was in Washington state. Sorry if anyone's there. Love you. But that was rough.
00:16:51
Speaker
Yeah. Not good. um Regular consumption of sweet foods. Oh, dang it. Love sweet food. um And they also did mention a history of vaccination.
00:17:05
Speaker
So the people that had RA had had um a couple of vaccinations, but I think they kind of glossed over it in the um report because I mean, I'm sure they didn't want to get into...
00:17:21
Speaker
um They cancel culture of the world. Yeah. But they basically said vaccination is a risk factor for RA. A comprehensive review revealed that rare autoimmune diseases, which include RA, may arise following vaccination.
00:17:34
Speaker
However, the true incidence of these diseases after vaccination remains difficult to determine. The safety of vaccines has been proven, and these vaccines are an important means of preventing disease. So I love that. Yeah, their vats.
00:17:47
Speaker
They're like, if it could be this, but we're good. yeah talk about but i also because it's interesting isn't it because these are people from the scientific community who love vaccines like the scientific community love vaccines so they can't be seen to be dicking down on vaccines like within they are those are their brothers in arms the people that make the vaccines right yeah um so i mean that's pretty much it from that um Yeah, that, why this matters, I guess, is that it could lead to early identification of at-risk individuals that would allow for early intervention.
00:18:29
Speaker
But I mean, me and Janessa was just talking off the record about the standard of doctors and like, there's just no way a doctor's gonna be like, oh, you live in a rural environment in a damp house and you've had this vaccine and you eat a lot of meat, you might get RA, let's pre-manage that, like obviously.
Predictors of RA Remission
00:18:47
Speaker
that's not gonna happen um so there you go that's that study it's kind of interesting um yeah it's just nice to know that people are of people are researching stuff like that yeah wow the meat and the fish one really got me though like i know for me yeah i've recognized like red meats are really hard on my body Just I think they're hurt. They are technically hard on everyone's body to break down red meats.
00:19:17
Speaker
But I think if you have an autoimmune disease, maybe I'm just too generally talking. But for me, I should say having an autoimmune disease when I eat like red meat too much, like within a period of time, my body does get a little bit more stiff. I've noticed that.
00:19:31
Speaker
ah haven't noticed it with fish, but I'm not really a fish person. I don't know. I've never really fish don't really do it for me. No. Yeah, well, this is this is what it says. So fish was a risk factor for RA in this study, and it showed that fish intake was positively correlated with RA risk.
00:19:49
Speaker
However, a recent large perspective study of postmenopausal women, random, but it's postmenopausal women, did not find an association between the intake of omega-3 fatty acids from fish and RA.
00:20:01
Speaker
However, the relationship between fish intake and RA needs further investigation. Interesting. Interesting. Maybe the vegans are going to end up being right all along.
00:20:14
Speaker
but They'd be so happy. They would be happy. Be nice validation for them. um Okay, so the next one is predictors of Boolean 2.0 remission in rheumatoid arthritis identified using smart disease management system data.
00:20:37
Speaker
so boolean 2.0 remission is a more flexible version of ra remission criteria um allowing for your markers to be greater less than or equal to two rather than less than and equal to one.
00:20:59
Speaker
So it's like just, it's slightly more relaxed. I think that they're saying you, I'll literally read it to you. So it means tender joint count, can be less than or equal to two.
00:21:12
Speaker
Swollen joint count can be less than an equal to two. CRP level, which is one of our common inflammatory markers that we get tested in our blood, can be less than an equal to two milligrams per milliliter.
00:21:27
Speaker
and So it's just it's just two rather than one. So it's just being a bit more flexible. on Because I think that's like, it's realistic, isn't it? Like you and I, if our tender joint count is less than two,
00:21:39
Speaker
we're like, I'm doing really well. That's how I feel at least. yeah Like yeah genuinely, like, like right now that is the case for me. And like, I'm so happy. I'm so happy with that. But yeah, no, it's nice to hear that because then when you hold yourselves to the crazy standard of remission all the time, you're like, yeah, wait, what's going on? And then that just, I feel like feeds the stress cycle that we just talked about. That's like bad for our health.
00:22:04
Speaker
So yeah. Yeah. ah Yeah. So they, this was a study of 5,000 people. This is again in China, our guys in China. um Study of 5,000 approximately r a patients from 2014 to which is interesting because that's kind of aligned to when we were being diagnosed and experiencing disease for the first time. So like if this was happening in the States or in the UK, we could have been part of the study.
00:22:34
Speaker
and So of those 5,000 patients, this is a bit of a sad stat, of these 5,000 patients, only 541 of them are in remission. That's 10%. That's a long time.
00:22:50
Speaker
It's nearly 10 years um of not getting to this Boolean 2.0 remission. So... Again, that just kind of reminds me of, I live in this airy-fairy state of like, oh, life's good, RA isn't even that bad. and And then I'm like, no, it is.
00:23:07
Speaker
I should remember that it is, and I'm very lucky. and So what came out of this study were the key predictors of achieving Boolean 2.0 remission.
00:23:19
Speaker
So these are the things that make remission more likely. Younger age at RA diagnosis. having a shorter disease duration.
00:23:31
Speaker
Not really, it's not really a sorry a standout point, is it? um Lower tender joint count at baseline. Again, not really that insightful. Use of methotrexate.
00:23:43
Speaker
Use of leflunamide. Do you know that one? Nope. Let me see. think you said it as good as I would.
00:23:54
Speaker
so this is such an under the radar it's a disease modifying anti-rheumatic drug never how have neither of us ever heard of that before yeah maybe you guys have yeah let us know if you have I'd i'd like to know that yeah sold under the brand name Arava Arava yeah yeah must be something the Chinese are keeping to themselves yeah um two drug demard combination therapies so again i also had that um negative predictors making remission less likely use of
00:24:41
Speaker
cortical steroids, you know, the steroids that we all take, prednisolone that I'm currently on, um and the use of JAK inhibitors actually um make you less likely to be in remission.
00:24:53
Speaker
But they noted in this study that it's, that might be to with the fact that by the time you're on JAK inhibitors, your disease is really bad. So like you only get put on that medication if you have a really bad disease experience in the first place. So that's a bit of a like, can't really, that's not a solid read.
00:25:12
Speaker
um But in both younger and older patients, the same remission predictors held true. And remission was slightly more frequent in younger patients, but still possible in older adults.
00:25:24
Speaker
um Why it matters, again, early aggressive treatment, especially with methotrexate and leflunamide, improves chances of remission, monitoring and engaging in patients via digital tools and models better supports disease control.
00:25:42
Speaker
So I think as another part of the study, they were logging people's data as opposed to just you going to the doctor and the doctor being like, is everything okay with you? How's it going? And you being like, yeah, they're actually like, oh, I can see from this and that, you know, data. Um,
00:26:00
Speaker
And then it also says another pointless point, tender joints are a strong signal of uncontrolled inflammation. Great. Thank you for, thanks for telling us that. ah So, I mean, the takeaways from this start treatment early, use a combination of DMARDS, focus on tight disease control and track progress via smart systems and be cautious with steroids and use them only if needed.
Global Trends & RA Impact
00:26:25
Speaker
ah But I think why i wanted to call this out was because that was basically my exact story. Like I had methotrexate and then we combined it with, um
00:26:36
Speaker
hydroxychloroquine I think was the first thing I combined it with and they got on that really quickly um so i mean yeah it's just underlying the fact that that is your best bet obviously it doesn't work for everyone but it's the best bet course of treatment yeah so I thought that was fun to call out definitely yeah no I think mine was methotrexate first and then um Then i combined it with an injectable, though. Then I went on Humira. Yes.
00:27:07
Speaker
That was the first thing. Yes.
00:27:11
Speaker
And you your medication now, that is in injectable, isn't it? Yeah. Yeah. yeah So yeah the medication that I am most currently on is called Simsia.
00:27:23
Speaker
And that's like, yeah, self-injection one. um But it it feels different. Like the way it's designed is different than like, you know, the auto injectors. Like you can push the button it like forces the needle down. Yeah.
00:27:37
Speaker
It's different. It's like a pre-filled syringe. So you actually have to physically like push your medication into your body, which I, ah first of all, whoever designed that, like, come on guys, we have RA in our hands. like yeah Like, I always think that when I'm pushing and it's like hard to push.
00:27:52
Speaker
And I mean, they try and do us a solid. They tried to make like the the like push area thicker so we can get more of a grip on it. But okay yeah, if you haven't seen what I'm talking about, you can, you can check it online. so Yeah.
00:28:04
Speaker
Yeah, that that takes something for you to do, I think. i'd I think I'd feel very different about medication if I had to do that. it makes it a little like real. It's like kind of too real sometimes. Okay, this is the last study, which I thought was interesting. So this is a global study.
00:28:31
Speaker
Epidemiology of Rheumatoid Arthritis among people aged 20 to 54 years 2021. from ninety ninety to twenty twenty one What a fun amount of time to study a group of people and see what's going on in the world of our disease for the last like 30 years. and So yeah, this was to analyze global trends and incidents, mortality and disability related to rheumatoid arthritis in people aged 20 to 54.
00:29:06
Speaker
um using global burden of disease data, which is obviously the name of the study that they've been going through. and And it also examined the impact of smoking and sociodemographic effect factors on these trends.
00:29:23
Speaker
So key findings, the global incidence of rheumatoid arthritis rose from 11 0.66 in that is an 81% increase in cases.
00:29:39
Speaker
per ah hundred thousand in twenty twenty one so that is and eighty one percent increase in cases Wow.
00:29:51
Speaker
That's so high. Oh yeah. That's nuts. um I can't remember if it goes into why they think that is, like whether it's just more people being diagnosed. um But yeah, that really stunned me. um The highest instant rates were in older age groups, 50 to 54 specifically, and females.
00:30:16
Speaker
reason regions with high socio-demographic index. So that is things like how much you earn, how nice the place you live is, like the crime that you're around, you know, like any of those like socio-economic factors that I guess we would call it like a class system. So the higher your socio-economic or your socio-demographic index, the more well off you are, the more you have in life, the easier your life is.
00:30:45
Speaker
um So reasons with high sociodemographic index showed higher incidence of getting RA. um But they think that is partly due to better diagnostics and reporting. So there are probably people living in poverty who have RA and don't have access to the kind of healthcare that they they um deserve to have treatment. Right.
00:31:10
Speaker
Randomly, Chile had the steepest increase in national incidents. and And Ireland had the highest incidence rate. So steepest means it's gone up the quickest, but highest means it's just increased the most.
00:31:27
Speaker
Wow. Interesting. Oh my gosh, people, listeners out in Ireland, listeners out in Chile, if you're here, we're hearing about you. Yeah, if you found us, because your incidences have increased so much, ah we hope we're helping and yeah we hope you are enjoying listening.
00:31:46
Speaker
um So mortality, so this is people that have been dying of rheumatoid arthritis, is Rates have declined slightly from 0.09 to 0.06 per 100,000. So those are good odds. zero point zero six 0.06 in 100,000 people die.
00:32:08
Speaker
I mean, I feel like that's basically no people dying. Yeah, that feels like very minimal. Like, because I think of like the odds of getting in an accident and dying, like in a car accident is way higher than that even. yeah So I'm like, okay, those are odds I can work with.
00:32:21
Speaker
That's what I'd say. Yeah, yeah i can work with those odds. um and maternity uh mortality remains higher in women but rates are declining faster in females than males um just so the disability um measure of disease burden in disability increased by 82 percent over 32 years. So that's kind of in line with the amount of rates that it has increased.
00:32:53
Speaker
And females had two and a half times higher disability than males. Again, maybe that's just because more women get RA. I would think so, yeah. yeah Yeah, definitely.
00:33:08
Speaker
um And yeah, disability rates were highest in middle socio-demographic regions, but low socio-demographic regions showed the highest increase.
00:33:21
Speaker
So again, that is just a fact, that's just a symptom of those people in the higher socio-demographic areas getting diagnosed more. and So that's why they have the highest amount.
00:33:32
Speaker
um Risk factor smoking. Smoking caused about 9% of RA related deaths and 7.3% of disabilities in 2021.
00:33:45
Speaker
The impact of smoking has declined over time, especially among women, thanks to stricter regulations. um But yeah, it remains a very serious thing. And i think we've been, we've we've spoke about this in the last couple of episodes, but I am still flawed now when I think about how much I used to smoke even after being diagnosed and just how,
00:34:05
Speaker
It 100% obviously goes back to those, the maladaptive coping mechanisms that we spoke about way back in our third episode. But um yeah, the thought, the thought of the stuff I used to do while taking methotrexate and just being like, what the hell was going on? What were you doing?
00:34:24
Speaker
Yeah. very young i'm sure in all loans yeah also saying is like yeah me too yeah yeah yeah i smoked like american spirit like all the way up until my diagnosis and even i think for the first month of being diagnosed because i was like i don't understand what i have And then once I researched it more, I was like, okay, maybe I should stop.
00:34:43
Speaker
But I can't believe was smoking. Like, I was like, what the heck? Yeah. Yeah. When you think about how serious these drugs we were on and the stuff I was mixing with them, I can't. Like, even, like, recreational drug use. Like, mental. Absolute loose cannon mentalness. Thank God for getting older and wiser.
00:35:06
Speaker
Yes. Yay. Yeah. ah So disparities by region, is this interesting? No, that's kind of what we spoke about earlier about how people with more money have better healthcare. Women are more affected by RA than men. Again, I think we all here know this.
00:35:25
Speaker
So yeah, that was interesting. No data on race or ethnicity was influencing the patterns. So maybe it's one thing finally that doesn't seem to impact back people more. Because you know, there's like, I don't know if it's the same in the States, but in the UK,
00:35:42
Speaker
Black people just have a harder time of everything. Like they get less diagnosed. The mortality rates for pregnant black women in the yeah UK is insane. They're like three times more likely to die being pregnant than white women are.
00:35:56
Speaker
There's a huge, yeah, huge healthcare burden on black women. So i'm really happy that we're all in RA together. yeah yeah no one's experiencing RA worse than anyone else according to the data.
Advancements in RA Detection
00:36:11
Speaker
that's good that's good yeah no same in the u.s there's unfortunately have the same trend here with a lot of like women of color who just don't receive the care they need or don't get the diagnosis as they deserve and need so yeah totally so it is good to know this ra is uh very equal in its distribution yeah um okay i i lied there's one more study sorry guys but this i thought i think this one is interesting I thought we were going have to take back that stat. And I like, oh, RA is not equal. I'm just kidding.
00:36:46
Speaker
Oh, no, and no, no. It's a different study. and This is a hopeful one. um Advances in rheumatoid arthritis pathogenesis,
00:36:59
Speaker
nothing short of extraordinary. Oh, I'm liking that title. Yeah. Recent advances in rheumatoid arthritis research have significantly deepened our understanding of how the disease starts, progresses, and how it might be prevented, particularly in its preclinical at-risk phase.
00:37:19
Speaker
Research has now emphasized early identification and targeted interventions based on genetic, immunologic, and environmental insights. So... Over the past two decades, numerous genetic variants have been linked to RA. So this is all new in the last 20 years.
00:37:38
Speaker
These findings help explain why certain people are more susceptible and may guide personalized treatment in the future. You may remember what we spoke about, don't know if it was the last episode or the one before that, but about how they're using data to predict what medicine is gonna work best for you.
00:37:59
Speaker
That's so cool. Sorry, Ian. Sorry, I was like, that's so cool. I think i've already said that the last two episodes, but still, it is really cool. yeah Autoantibodies, ACPA, which is a type of autoantibody and others are not just diagnostic markers, but actively promote disease progression.
00:38:22
Speaker
so research can focus on how these antibodies interact with proteins modified by processes um like citrullination and oxidative stress. Let's find out what citrullination is.
00:38:38
Speaker
It's a post-translational modification where an, okay, this is not clearer, where an arginine residue in a protein is converted to citrulline, a non-coded amino acid. Okay.
00:38:52
Speaker
Wow. Something going on in your cells. Something going on in your cells. Don't worry, guys. This is how antibodies react in your body. um Mucosal immunity and the microbiome.
00:39:04
Speaker
RA may begin in the mucosal surfaces, example, mouth, gut and lungs, long before joint symptoms. Bacteria in the gut or oral inflammation may trigger systematic autoimmunity.
00:39:21
Speaker
Researchers call these processes mucosal endotypes, distinct paths to disease involving local microbiota and immune responses.
00:39:33
Speaker
So now I'm gonna flip over to a different article that absolutely me away. um So the long and short of it is I could sit here all day, but you guys are probably like, can she shut up?
00:39:49
Speaker
And they've been testing a the University of Colorado have been testing. joint tissue from patients with early stage rheumatoid arthritis to test what proteins that they have within the in the joint tissues.
00:40:06
Speaker
And they found that high levels of a protein called granzyme is used by the immune system to attack pathogens. And then this was what blew me away. The study also detected remnants of a bacteria that causes gum disease known as gingivitis, very common.
00:40:25
Speaker
In the tissue samples, so while a connection between gingivitis and rheumatoid arthritis has long been suspected, this is the first time physical evidence of the bacteria has been found in the joint tissue.
00:40:41
Speaker
Wow. Oh my goodness. How exciting. I always had swollen gums growing up. Whenever I to the dentist, they were like, are you flossing enough? And truthfully, I probably wasn't, but I wasn't like not flossing.
00:40:57
Speaker
But I was like, I'm flossing, you know, and they just say like, they tend to bleed every now and then. And like, remember my dentist just being like, you know, you have such inflamed gums. And I was like, 10. So I was like, i don't know what to do with that. Yeah.
00:41:11
Speaker
But I also remember one of our very first episodes the Winded Helios podcast, Amy and I both discovered that our tonsils were super responsive when we were kids. Like, totally would get swollen. You could totally feel them.
00:41:25
Speaker
um And those would be kind of like the first things to go, like, before we'd get sick. And I feel like that's just all in the mouth. And I think it's just incredible now that, like, that we're learning this. This is so good. Like, if we know that ahead of time, we can try and...
00:41:39
Speaker
who knows manage that and hopefully not let it move from our gums to our joints so yeah yeah yeah so that's what they basically think is this now supports the idea that past infection does or might help trigger RA so it's just getting closer to that um yeah finding out what causes it ah so that was fun we love it we love a scientific development um And then they also, so this, what I'm reading from is this huge summary of a lot of different studies. It's basically just all the all the cool stuff that they found. So something else that they found is preclinical RA as a window for prevention. So the preclinical stage presence of autoantibodies without joint symptoms yet is now a major focus.
00:42:34
Speaker
Studies suggest that early immune checkpoint failures allow disease to progress silently before becoming clinical RA. So future treatments may target individuals during this stage to prevent or delay disease onset.
00:42:49
Speaker
So I think an example of this for me is that I have rheumatoid factor in my blood. Because I have seropositive and I could have probably would have had that for a long time before I had symptoms.
00:43:03
Speaker
So had someone tested me and found out I had rheumatoid factor in my blood, we could have prevented it from ever progressing into the disease is now. Wow. Yeah.
00:43:15
Speaker
Yeah. Oh, that's so good. Because I agree. that That is often on my mind when I think of RAs. It's like, how can you prevent something that creeps up so suddenly, but not suddenly? You know what i mean? It's just, yeah it's not enough at first to be like overly concerned for me. It wasn't at least.
00:43:32
Speaker
And then it just gets rampant. And you're like, oh my gosh, now I am extremely concerned. Like, For me, I've always been like, how do we figure that out before it goes rampant? So, yeah, I think also if they change the standard, just hot take from Janessa, if they change that standard, it would be important because I think a lot of people with RA and other autoimmune conditions have been kind of...
00:43:56
Speaker
told that, you know, there are maybe they're going through growing pains or something different. They kind of like casted to the side by the medical community or told that nothing's going on that that the doctor can tell.
00:44:07
Speaker
so like if they're actually looking for these markers ahead of time, it's like you can't it's less likely that you would be denied. what you're experiencing I feel like yeah um and this was another thing that I thought was really validating is i think they make a recommendation for stage-based personalized treatment so you kind of forcing the acknowledgement that RA is not one disease but it includes different subtypes also called endotypes based on seropositivity so whether you have rheumatoid factor or you don't whether you have certain antibodies or you don't your age and sex and your general immune profile and also your synovial tissue characteristics because kind of like we were just talking about whether you have traces of previous disease or bacteria in your joint tissue or
00:45:04
Speaker
We know something that's always puzzled me is I have a lot of pain but I don't always have the joint swelling that I see other people
Personalized RA Treatment Approaches
00:45:14
Speaker
have. You know, I see people pictures of their like blown up knees where their knees swollen.
00:45:19
Speaker
i tend to have more like swollen tendons. So like my whole hand hurts, cause it's like every tendon in my hand is hurting. So it's just that acknowledgement that it's, it doesn't all present in us in the same way and it should be treated differently.
00:45:35
Speaker
and care should be taken to match treatments to ah patient's endotype not just rheumatoid arthritis take your methotrexate so that's really cool yeah yeah so yeah that was fun that was all the studies that's like all the technical stuff um and now We've ah kind to be honest, kind of only got one more random thing that I'm just going to read to you. But before I move on, I was just thinking with the subtypes.
00:46:09
Speaker
Like, okay, I feel so strongly that that should be a thing because I have had the experience where I've met people not met people in person, but like online who have RA and they're like, it's not that bad. Like I live a really normal life. Like, you know, and I remember when I heard that in the very, very beginning of being diagnosed when I was at my very worst, I was like, what are you talking about?
00:46:33
Speaker
What are you talking about? It's not that bad. Like I, I can barely make it to the toilet. i can barely sit down. My knees are so like swollen. And like, I think having the stages would validate a person also with where they're at in their journey and then also validate when we're starting to feel a little better if you can go down a stage like what what progress or what positivity that would give you in mind for your journey ahead so like I'm all about that I just feel like that would really make it better yeah
00:47:05
Speaker
I hadn't even thought, I honestly i hadn't even thought of that, that you can make like positive progress potentially backwards down a scale. It's not just like remission or active, but you can be not in remission yet, but have certain markers be lower and yeah, i really feel like you're making progress.
00:47:22
Speaker
And yeah, exactly what you just said, like when people like, oh, it's not that bad. or You can be like, well, because I have this, this different endotype to you and that's why it's harder for me.
00:47:34
Speaker
Yeah. Love it. We all we just want acknowledgement. We want to put a name to it. We want to be able to have progress. That's what we
Innovative RA Therapies
00:47:44
Speaker
want.
00:47:44
Speaker
We want we want to know what's going on with us and feel empowered against it.
00:47:52
Speaker
And OK, random bonus wildcard article.
00:47:58
Speaker
This I actually could read like a newsreader because it's written like newsreader. Do it. Can you it? It's last one. Come on. Come on. Yeah. It's a debilitating disease that affects more than 500,000 Australians, but new research from the University of South Australia is offering fresh hope to people living with rheumatoid arthritis.
00:48:16
Speaker
Evaluating the effectiveness of a novel form of exercise, blood flow restricted resistance training among people with RA, researchers has found that this alternative workout method not only improved their strength and physical performance, but also reduced their pain.
00:48:33
Speaker
Blood flow restricted resistance training in Belgrade. Amy, it's so good. I thought it ended there and I was like, oh my gosh. Sorry, sorry. Keep going.
00:48:45
Speaker
um Wait, do you want me to keep doing it in the newsreader voice? Keep doing it, please. It's it spot on.
00:48:54
Speaker
Blood flow-resisted resistance training involves placing a pneumatic cuff, much like a blood pressure cuff, around the top of the working limb. The cuff is then inflated so that it restricts blood flow out of the limb, creating a highly metabolic environment where which forces the muscles to work harder, even when using lighter weights or less effort.
00:49:16
Speaker
The Arthritis Australia funded study is the first to trial blood flow restricted resistance training on both the upper and lower limbs in people with RA, using five exercises, the leg press, the machine hamstring curl, the machine knee extension, cable tricep extension, and cable bicep curl, with gradually increasing weights.
00:49:39
Speaker
All participants in the study reported that they liked the program. That's so funny. And the group showed clear improvements in strength, movement, and pain levels. and I'm going to stop reading it in the voice now. Okay, that's incredible. I think found your calling again. I've said this like three times throughout all the years we've done this. I'm like, I found your calling.
00:49:59
Speaker
But oh my gosh, you would be such a good news anchor person. Like just your accent and just the way you're reading it. was like, oh my gosh, that's incredible. That's amazing. Oh my gosh. Maybe I'll start to audition. i feel like, you need a degree to do that?
00:50:12
Speaker
I mean, I don't know, but I think you could audition. Or you could even start, you know how we used to do a hot or not? Maybe I do the rheumatoid news minute or minutes or whatever you'd call yeah. And then I can build my portfolio through doing the new. Yeah.
00:50:29
Speaker
Send it in. But no, so on these um there blood flow restricted sessions, workouts. um How interesting, but can you imagine going at the gym with the blood flow to your limbs restricted?
00:50:49
Speaker
um and also, yeah, it annoyingly doesn't explain how or why they think it helps. It just says like resistance training is one of the best ways to build strength, which we know, um and like strength, strengthen and stabilize your muscles.
00:51:05
Speaker
um But it just doesn't explain anything about why cutting the blood flow off while you do that. um actually helps with arthritis symptoms so i don't know it looks like because this was a small scale trial and they are gonna lay the foundations for a bigger trial comparing comparing blood flow restricted resistance exercise to more traditional exercise approaches um there's your hand amy we just have to send this news clip you've made to them that small trial that small trial
Closing Thoughts & Future Directions
00:51:38
Speaker
That's it. That's the end. Can I be the face of this? Yes.
00:51:44
Speaker
i So, yeah, that's your news. That's everything that's going on in the world of rheumatoid arthritis. Study and um research and...
00:51:59
Speaker
Yeah. Trials. You're up to date. Amazing. ah I feel like I can. i'm like i was going to say I could i can speak for the listeners. That's not true. I feel like I can speak as a listener of this episode firsthand because Amy did all this amazing research and got this together for us. Like I'm feeling like that is so much good food for thought and it's helpful.
00:52:21
Speaker
Like I'm feeling like, OK, I love the idea of breaking up. the disease into classifications of like stages I think that will be so important in the future i don't know there's a lot of good stuff here and also University of Colorado you go guys you go guys yeah i on the tissue that's huge I feel like that yeah that's gingivitis in the tissue that's huge
00:52:46
Speaker
ah Oh, that's so funny. ah Yeah, no. I mean, it just it does feel good to have anything that feels like even something closer to like an answer or piecing the puzzle together. Because we just we've discussed it before. I feel like ah we' all we do these days is be like, we discussed this before, but...
00:53:08
Speaker
not know it's the not knowing that sucks like why did this why me why is this happening did I do something is it gonna happen to my future children is it gonna happen to other people I know it's just the the not knowing is ah is a hard thing to deal with so every little thing that feels closer to us knowing something feels good and it uplifts me yes we'll take it ah thank you Amy for putting this together Thank you for listening.
00:53:40
Speaker
and everybody. is so great to have you back here. we hope you enjoyed the episode. ah Please let us know. There was a medication we mentioned in the beginning of the episode that we both were not familiar with. So let us know if you've tried that.
00:53:52
Speaker
I'd be interested to know. What was it called? Lif?
00:53:57
Speaker
I have no idea. Lifemlep.
00:54:03
Speaker
hang on hang on i'm just looking through everything maybe it was u f it was u f no i could we don't know i don't know what it is let us know oh left left on a mind left lunamide Okay, so that I'm not going to try and say it because I'm going to butcher that.
00:54:24
Speaker
But yeah, what Amy just said, let us know if you've tried it. I just would be really interested to know about that and see how that was for you guys. ah yeah But yeah, we'll look forward to seeing you guys in two weeks.
00:54:36
Speaker
And until then, remember to let the light in. Yay! Bye, guys. Bye.