March 29, 2020

Interview with James Allen - Developer of the Chronic Insights App

Interview with James Allen - Developer of the Chronic Insights App

Jayson:

Welcome to this episode of The Ankylosing Spondylitis Podcast. This is going to be really a neat episode because I've got James Allen on the line. James is a fellow ankylosing spondylitis person. And James has developed a really cool app called Chronic Insights. And James, how are you doing today?

James:

Hi, Jayson. I'm not too bad today. Yeah, you know, the usual ups and downs, aches and pains, as we all know, but yeah, today, I guess is about, I'd say, three or four out of 10 on the pain scale, so not too bad. How are you?

Jayson:

Oh, I'm doing great. Today was my Cosentyx day. So that means we're gonna have a good day. I've learned something new. As people that are listening to the show. I learned a new word and I want to share it and it's called Kip, and I have no idea that that's a British word for taking a nap.

 

James:

Yeah, sometimes if you're feeling really tired, you just need to go have a Kip for 10 minutes.

 

Jayson:

There we go. What a cool word man. That is awesome. So James, why we are talking is not only just because you have Ankylosing Spondylitis, but I first want to talk about Chronic Insights for a few minutes. Tell the listeners, what is it, what can they do with this app? Because it's really cool, but I'd rather have you tell them.

 

James:

So Chronic Insights is essentially, it's a symptom diary. It's an app that I've been working on for about a year now. You can it's available on the Google Play Store, and also on testflight, which is Apple's version of beta testing. So not officially released yet. It's really version 1.0. It's a bit rough around the edges and I'm looking to get people to try it out for me and give me some feedback. And what it does is quite simple really allows you to record your symptoms throughout the day, whether that's pain or fatigue, stiffness, anxiety, mobility issues, any symptom that you want to track. So it's mainly for people with chronic pain or chronic fatigue, people like us with Ankylosing Spondylitis, or other potentially other conditions as well like Fibromyalgia or other forms of arthritis, Endometriosis. I mean, the list is endless the number of conditions which involved chronic pain and fatigue. So you can record say, right now, I mentioned before, I'm probably about three out four out of 10. I can just record that in the app, it's captured. I don't have to remember that. I can also record where on the body the pain is. So at the moment, it's kind of my middle of my back right now, but throughout the day, it shifts and changes maybe it'll be my shoulders layer, or my hips, and so buying, tracking and recording throughout the day, you can then look back on your symptoms and see, what are the trends or the patterns? What are the things that I've trained that have potentially impacted my symptoms? And and what does that look like when you look at the, the graphs and the charts that are available? And what does it look like visually on the body, as are there particular areas of the body, they're affected more or less over, you know, on average. So that's, that's essentially what it does in an in a nutshell.

 

Jayson:

As you said, you can record the different items through the day, but you can record them the way the graphs are set up in there. If I'm having pain in my spine, I can actually pull up the copy of a skeleton and circle the spine. If I'm having muscle pain, I can pull up a full body image, not me but just have a representation and circle the part of the body that is hurting so maybe it's your rib cage and it's hurting one day, but it's your Left leg the next day. You can you can adjust and it's not just some, you know, static figure you're able to bounce back and forth between skeletal and muscular pain.

 

James:

Yes. I mean, that was one of the main goals of creating the app because there are other symptom diaries out there on the app stores. And I tried quite a few of them myself when I decided I wanted to start managing my my symptoms better, but none of them I found really allowed you to record the location of my of your pain very well. I mean, some apps kind of give you a basic ability to do that, but I just thought they were all they were. I felt like I could make a better one basically, because, I mean, all forms of chronic pain but most forms that I know of the pain is never constant and never changing. It's usually changing all the time. And that's one of the things that is difficult. To manage when it comes to chronic pain is the fact that it's constantly up and down and, and so when it comes to talking to your doctor and tell you know, they they ask you, how have you been? You know, Jason, it's been six months since last appointment we how you've been, and I don't know what it's like for you and I find my mind kind of goes blank, I don't know what to say there's so much has happened. It's almost and I can't remember most of it. I probably just tell them how I felt today or yesterday because that's all I couldn't really remember. But having this visual record of which parts of my body been hurting, to be able to show somebody picture, it's so much easier.

 

Jayson:

Well, it seems that invariably almost every time I go to the doctor, I edit, let's say a two or three on the pain level, and even though I do walk with a cane and have a leg brace, you know, there's still a big difference between me at a seven or eight versus a two or three and if I go walk in and feel pretty good. Are you walking If you visit with your doctor and say, yeah, I'm doing I'm doing okay, that doesn't give a true picture if they've haven't seen you in six months a year where the cool thing about this app is right now there's a basic export feature to show your doctor here's here's kind of my pain journal here's here's what I've been dealing with and I think that's pretty cool.

 

James:

Exactly I mean, that's that's a such a change with me because it with my own experience of whenever I will go in to see the doctor. More often than not he I would happen to be having a good day, and it was almost frustrating in a way that I would go in. I'd be feeling fine or not fine, but pretty good. I don't know about about you, but my rheumatologist likes to do these measurements while I'm there. So I'll try and touch my toes, bend over and touch my toes. And he'll measure how much my back flexes with a tape measure and kneel measure my chest expansion with a tape measure as well and a couple of other things and I mentioned The doctor's appointment and I'm, and I know I'm doing quite well, because I'm having a good day. It's almost, it's frustrating. So I kind of have an idea. And I do say, you know, by the way, this is a good day. You know, if you did this yesterday or the day before the measurements wouldn't be the same, it'd be much less but all they can do because the yearning see them for this brief fraction over time, all they can do is just magically how you are right then. So another one of the motivations that made me want to create a better symptom diary to help me describe the full picture because doctors only ever see that tiny little slice of the story. 

 

Jayson:

Speak of the story. You develop this because you have Ankylosing Spondylitis. Tell me a little bit about your journey of discovering Ankylosing Spondylitis, you're dealing with it to what led you up to the creation of this app.

 

James:

Well, it started like a lot of people with as I think started windows was very young. So I was 16 years old. And just out of nowhere out of the blue, my right knee just blew up literally within the space of a day. It went from fine to very swollen and stiff. And the next day, it looked like there was a balloon inside it. I almost couldn't see my kneecap anymore. It was just this round thing. It's kind of freaky. So that happened just for no reason that I could figure out so I came, you know, I came down the stairs and I said, Mom, Dad, you know, my knees stiff and swollen. What do I do? I was very lucky because my dad has worked in the NHS all of all of his life. So the NHS is central health service in the UK, the National Health Service and my dad had been had worked in there mainly as an ophthalmologist who's a basically an eye doctor. He did cataract through his career. So he knew Straight away saying that I needed to see a rheumatologist which, you know, most people don't get that the normal route would be you go and see your GP and then hopefully your GP knows a bit about rheumatology and knows to refer you there, but I was lucky that I could basically go straight to the rheumatologist because my dad knew straight away. Oh yeah, this is some sort of rheumatic reaction. So I got to see a rheumatologist pretty quickly. He drained my knee, took all the fluid out and immediately started investigating it. So I had the blood test. You initially called it a reactive arthritis, which I think is just like an umbrella term for arthritis that is caused by some sort of reaction, your immune system reacting to something. So from there, the blood test came back as I think it was called zero negative, which meant which narrowed that diagnosis pretty quickly. You know, within a few months, I was diagnosed with ankylosing spondylitis. This is what it is. So you know, I'm very well aware that's probably not the typical story. Most people take a lot longer to get diagnosed, but I was pretty quick initially, it actually didn't really it wasn't a big problem. The first few years that the stiffness and swelling went away. I started on a drug called sulfasalazine and I can't remember but I might have started non-steroidal anti-inflammatories as well, which took the swelling away. And not a lot happened for a couple of years. Really, it just sort of I just sort of forgot about it. It was only until I started to go to university that it started to spread to my lower back. So I started getting pain in my lower back a lot and just very, very gradually over the next couple of years. That just seemed to get worse, worse and worse, just very, very gradually. and stuff. I noticed it started affecting my hips, and sometimes my shoulders, or my whole spine, and just getting more and more pain and stiffness, and the fact that it, it was so gradual, the change, the increase in pain and fatigue, I almost didn't really notice it happening. I mean, obviously, I noticed that I was in pain, but I didn't know as how much help I really needed. I didn't really notice how much trouble I was I was in until I kind of got to a breaking point when I was at university because I was I was trying to do my studies, student Psychology at the time, and it was getting really hard to go to lectures to do do my work. Just get up in the morning start to get get really hard. What I was doing at the time. I was just trying to plow on regardless. Just just basically trying to force my way through it. Just try and pretend that it wasn't happening. You know, just try and do absolutely everything that I was doing, and just sort of fighting through it. And that worked that that, you know, I could do that for a couple of years. I was, you know, young. I wanted to get on with my life and my career. But after, after a couple of years of doing that, it just, it just slowly ground me down a little bit. And, yeah, it got to a point where I suddenly realized I didn't know what to do. It was it was getting so hard, like everything was getting so hard. Yeah, I guess the sort of stress and anxiety and depression sort of snuck up on me. Until one day I just, I realized I really needed some help. So I went to see a counselor at the university and I saw I just burst into tears after about just a few minutes of talking to the counselor and you know, I finally had somebody who wasn't my family or close friends somebody that I could just be completely honest with and actually just explain what was happening I had never really explained or described to anybody from the from the beginning what what was happening, and when I was going through doing that, I just I just sort of broke down into tears and that's when I realized that I was I was really suffering you know, I needed I needed I needed some help. So, yeah, I I gone through some tough times at university, and that that's when I started getting more help from my rheumatologist which we tried for quite a while changing to different non steroidal anti inflammatories or tried diclofenac one called  Naproxen, one called Taracoxip(sp) started on painkillers, tried all sorts of different things. And it didn't really help. It wasn't well it did. It did help but not enough. I was in a lot of pain. And one day at one day where my rheumatologist I just said, I don't know what to do, and I'm really struggling and kind of hack. Yeah, I just I just don't know what to do what what, what else can we do? And because oh, by that time I learned to sort of be more honest about what was going on inside me. Instead of just bottling it up and just trying to soldier on I was, I was much more willing to say, I'm really struggling here. I'm in a lot of pain. And so that's when he said, okay, James, I didn't realize you were struggling so much. Let's start you on this thing called Humira. So people who have as probably heard of biologics, and now you've obviously heard a biologic He cause he hadn't realized how much I was struggling because I kind of had an ear when I was younger even just saying out loud I'm in a lot of pain was quite hard to do because almost saying that makes it more real.  You almost don't want to say it because by saying it you kind of admitting that your life is not great right now

 

Jayson:

Saying it means you give into it, saying it to me. I completely understand what you're saying because as a young guy, it felt like anytime I said it to any level about my pain, that it maybe was defeating me that I was less.

 

James:

 Yeah.

 

Jayson:

I wasn't where I needed to be. I wasn't living up to what maybe my own expectations or others were. And so I completely understand that. It's, it's, and I don't know if women experienced the same because I just haven't had that conversation. But when I talk to other guys that have it, which is not that many. This is only second or third conversation I've had with people with it directly, it's kind of that you're showing that weakness you don't want to show. It's something that when I was young, there was nothing was gonna stop me. I was going to climb every mountain that was thrown in front of me. Well, this was a mountain. I couldn't climb, not by myself. And that was probably the hard part.

 

James:

Yeah, yeah. There's something about I think being especially I don't know, obviously, I don't know how compare but maybe being a young man. I don't know if it's harder than being a young woman. But yeah, I find it really tough like you to just to, just to realize and admit that you need help, that you're sad, you know, that you're, maybe you don't know how to handle it. You don't know quite what to do, because these are all the thoughts that I was having, but I was kind of bottling it all up, which makes it even worse, which makes it worse for sure. I mean, I think the I think is well known now that stress affects the immune system and affects your nervous system. You know, in fact, Your body this is this this really strong link between what happens in the mind and what happens in the body. And for sure if you're more stressed you are the more I think it I think it definitely makes it worse. Yeah. So getting on to biologics was was a huge thing for me. So the one I started on was called Humira and I'm so glad that I am so grateful that I sort of opened up and, and explained what was going through because I took the first injection of Humira and I was sort of told that maybe if, if it you know, it works for some people, that doesn't work for other people. Let's give it six to eight weeks, and we'll come on we'll have you back in and we'll see if you've improved. So I had my first injection and I wasn't, so I was, I was expecting this long, slow, possibly possible improvement, but what happened was the next day I woke up and I straightaway I felt something's different. I wasn't quite sure what it was. But after a few moments, I realized that I could move my neck, just the movement, my neck felt different. And I realized, all right, I can actually move my neck in look further than I had moved it than I could comfortably move it before. And it just took off. It was, it was it was just like a miracle. It was like this miracle cure out of nowhere, that completely took away my symptoms. I mean, for you know, I would occasionally notice it every maybe once a week or a couple of times a week. But for the most part, I could just I got my life back. I could do what I what I did before. It was Yeah, it was amazing. I even I did a half marathon which I would never would have thought of To to raise money for the National Ankylosing Spondylitis Society. So our half marathon called the Great North Run. And that happens in Newcastle where I live, so that that was just just amazing. 

 

Jayson:

So tell me, what year was that?

 

James:

So that would have been 2010 by the time I got on to humera that was 2010. Okay, so you're a young guy, you started a biologic, you're having great success with it right off the bat, which is not unheard of. I know doctors like to tell you give it six, eight weeks, give it up to six months, and you might notice some difference, but I noticed not just Humira but biologics in general, if your body is going to accept them, it seems to be fairly quickly that they like that reduction, inflammation. 

 

Jayson:

And so now you're young guy, you're on this biologic, you're feeling well, are you still on Humira?

 

James:

I'm not No, I'm actually on something called Cimzia or Certolizumab because what happened was after three years of being on Humira I started noticing my sort of background pains which were really Humira made it really minimal, almost gone but after three years I started noticing is it can is it gotten? Is it getting a bit worse and over over the space of a few months, all my symptoms came back I just got all the pains that are coming back the fatigue, and I knew I knew within about a month Oh, here we go. I I remember this I remember what this feels like. This is this is Ankylosing Spondylitis, coming back. So it's different for everybody but with biologics, and with anything to do with the immune system. The thing is, the immune system is so amazingly complicated. It scientists don't understand a lot about how it works. Still, and That's why these drugs affect some people. And it doesn't affect other people and people's. Some people have side effects some people don't. And it turns out some people become older. I don't think it's entirely known why but for some people, the effects start to wear off after a few years. And I just happen to be one of these people where for whatever reason, and it's not quite known wine, whether it's my immune system that has become almost immune to the, to the drug, or what I think there's a theory that my immune system actually starts attacking the Humira and destroying it before it can take effect, which is quite annoying, but for whatever reason, it all came back. And that was probably harder than that was harder to take than the original onset, because I knew what was coming. And I'd had these three years where My symptoms had gone down so dramatically. And I managed to get into...


Transcript

Jayson:

Welcome to this episode of The Ankylosing Spondylitis Podcast. This is going to be really a neat episode because I've got James Allen on the line. James is a fellow ankylosing spondylitis person. And James has developed a really cool app called chronic insights. And James, how are you doing today?

 

James:

Hi, Jayson. I'm not too bad today. Yeah, you know, the usual ups and downs, aches and pains, as we all know, but yeah, today, I guess is about, I'd say, three or four out of 10 on the pain scale, so not too bad. How are you?

 

Jayson:

Oh, I'm doing great. Today was my Cosentyx day. So that means we're gonna have a good day. I've learned something new. As people that are listening to the show. I learned a new word and I want to share it and it's called Kip, and I have no idea that that's a British word for taking a nap.

 

James:

Yeah, sometimes if you're feeling really tired, you just need to go have a Kip for 10 minutes.

 

Jayson:

There we go. What a cool word man. That is awesome. So James, why we are talking is not only just because you have Ankylosing Spondylitis, but I first want to talk about Chronic Insights for a few minutes. Tell the listeners, what is it, what can they do with this app? Because it's really cool, but I'd rather have you tell them.

 

James:

So Chronic Insights is essentially, it's a symptom diary. It's an app that I've been working on for about a year now. You can it's available on the Google Play Store, and also on testflight, which is Apple's version of beta testing. So not officially released yet. It's really version 1.0. It's a bit rough around the edges and I'm looking to get people to try it out for me and give me some feedback. And what it does is quite simple really allows you to record your symptoms throughout the day, whether that's pain or fatigue, stiffness, anxiety, mobility issues, any symptom that you want to track. So it's mainly for people with chronic pain or chronic fatigue, people like us with Ankylosing Spondylitis, or other potentially other conditions as well like Fibromyalgia or other forms of arthritis, Endometriosis. I mean, the list is endless the number of conditions which involved chronic pain and fatigue. So you can record say, right now, I mentioned before, I'm probably about three out four out of 10. I can just record that in the app, it's captured. I don't have to remember that. I can also record where on the body the pain is. So at the moment, it's kind of my middle of my back right now, but throughout the day, it shifts and changes maybe it'll be my shoulders layer, or my hips, and so buying, tracking and recording throughout the day, you can then look back on your symptoms and see, what are the trends or the patterns? What are the things that I've trained that have potentially impacted my symptoms? And and what does that look like when you look at the, the graphs and the charts that are available? And what does it look like visually on the body, as are there particular areas of the body, they're affected more or less over, you know, on average. So that's, that's essentially what it does in an in a nutshell.

 

Jayson:

As you said, you can record the different items through the day, but you can record them the way the graphs are set up in there. If I'm having pain in my spine, I can actually pull up the copy of a skeleton and circle the spine. If I'm having muscle pain, I can pull up a full body image, not me but just have a representation and circle the part of the body that is hurting so maybe it's your rib cage and it's hurting one day, but it's your Left leg the next day. You can you can adjust and it's not just some, you know, static figure you're able to bounce back and forth between skeletal and muscular pain.

 

James:

Yes. I mean, that was one of the main goals of creating the app because there are other symptom diaries out there on the app stores. And I tried quite a few of them myself when I decided I wanted to start managing my my symptoms better, but none of them I found really allowed you to record the location of my of your pain very well. I mean, some apps kind of give you a basic ability to do that, but I just thought they were all they were. I felt like I could make a better one basically, because, I mean, all forms of chronic pain but most forms that I know of the pain is never constant and never changing. It's usually changing all the time. And that's one of the things that is difficult. To manage when it comes to chronic pain is the fact that it's constantly up and down and, and so when it comes to talking to your doctor and tell you know, they they ask you, how have you been? You know, Jason, it's been six months since last appointment we how you've been, and I don't know what it's like for you and I find my mind kind of goes blank, I don't know what to say there's so much has happened. It's almost and I can't remember most of it. I probably just tell them how I felt today or yesterday because that's all I couldn't really remember. But having this visual record of which parts of my body been hurting, to be able to show somebody picture, it's so much easier.

 

Jayson:

Well, it seems that invariably almost every time I go to the doctor, I edit, let's say a two or three on the pain level, and even though I do walk with a cane and have a leg brace, you know, there's still a big difference between me at a seven or eight versus a two or three and if I go walk in and feel pretty good. Are you walking If you visit with your doctor and say, yeah, I'm doing I'm doing okay, that doesn't give a true picture if they've haven't seen you in six months a year where the cool thing about this app is right now there's a basic export feature to show your doctor here's here's kind of my pain journal here's here's what I've been dealing with and I think that's pretty cool.

 

James:

Exactly I mean, that's that's a such a change with me because it with my own experience of whenever I will go in to see the doctor. More often than not he I would happen to be having a good day, and it was almost frustrating in a way that I would go in. I'd be feeling fine or not fine, but pretty good. I don't know about about you, but my rheumatologist likes to do these measurements while I'm there. So I'll try and touch my toes, bend over and touch my toes. And he'll measure how much my back flexes with a tape measure and kneel measure my chest expansion with a tape measure as well and a couple of other things and I mentioned The doctor's appointment and I'm, and I know I'm doing quite well, because I'm having a good day. It's almost, it's frustrating. So I kind of have an idea. And I do say, you know, by the way, this is a good day. You know, if you did this yesterday or the day before the measurements wouldn't be the same, it'd be much less but all they can do because the yearning see them for this brief fraction over time, all they can do is just magically how you are right then. So another one of the motivations that made me want to create a better symptom diary to help me describe the full picture because doctors only ever see that tiny little slice of the story.

 

Jayson:

Speak of the story. You develop this because you have Ankylosing Spondylitis. Tell me a little bit about your journey of discovering Ankylosing Spondylitis, you're dealing with it to what led you up to the creation of this app.

 

James:

Well, it started like a lot of people with as I think started windows was very young. So I was 16 years old. And just out of nowhere out of the blue, my right knee just blew up literally within the space of a day. It went from fine to very swollen and stiff. And the next day, it looked like there was a balloon inside it. I almost couldn't see my kneecap anymore. It was just this round thing. It's kind of freaky. So that happened just for no reason that I could figure out so I came, you know, I came down the stairs and I said, Mom, Dad, you know, my knees stiff and swollen. What do I do? I was very lucky because my dad has worked in the NHS all of all of his life. So the NHS is central health service in the UK, the National Health Service and my dad had been had worked in there mainly as an ophthalmologist who's a basically an eye doctor. He did cataract through his career. So he knew Straight away saying that I needed to see a rheumatologist which, you know, most people don't get that the normal route would be you go and see your GP and then hopefully your GP knows a bit about rheumatology and knows to refer you there, but I was lucky that I could basically go straight to the rheumatologist because my dad knew straight away. Oh yeah, this is some sort of rheumatic reaction. So I got to see a rheumatologist pretty quickly. He drained my knee, took all the fluid out and immediately started investigating it. So I had the blood test. You initially called it a reactive arthritis, which I think is just like an umbrella term for arthritis that is caused by some sort of reaction, your immune system reacting to something. So from there, the blood test came back as I think it was called zero negative, which meant which narrowed that diagnosis pretty quickly. You know, within a few months, I was diagnosed with ankylosing spondylitis. This is what it is. So you know, I'm very well aware that's probably not the typical story. Most people take a lot longer to get diagnosed, but I was pretty quick initially, it actually didn't really it wasn't a big problem. The first few years that the stiffness and swelling went away. I started on a drug called sulfasalazine and I can't remember but I might have started non-steroidal anti-inflammatories as well, which took the swelling away. And not a lot happened for a couple of years. Really, it just sort of I just sort of forgot about it. It was only until I started to go to university that it started to spread to my lower back. So I started getting pain in my lower back a lot and just very, very gradually over the next couple of years. That just seemed to get worse, worse and worse, just very, very gradually. and stuff. I noticed it started affecting my hips, and sometimes my shoulders, or my whole spine, and just getting more and more pain and stiffness, and the fact that it, it was so gradual, the change, the increase in pain and fatigue, I almost didn't really notice it happening. I mean, obviously, I noticed that I was in pain, but I didn't know as how much help I really needed. I didn't really notice how much trouble I was I was in until I kind of got to a breaking point when I was at university because I was I was trying to do my studies, student Psychology at the time, and it was getting really hard to go to lectures to do do my work. Just get up in the morning start to get get really hard. What I was doing at the time. I was just trying to plow on regardless. Just just basically trying to force my way through it. Just try and pretend that it wasn't happening. You know, just try and do absolutely everything that I was doing, and just sort of fighting through it. And that worked that that, you know, I could do that for a couple of years. I was, you know, young. I wanted to get on with my life and my career. But after, after a couple of years of doing that, it just, it just slowly ground me down a little bit. And, yeah, it got to a point where I suddenly realized I didn't know what to do. It was it was getting so hard, like everything was getting so hard. Yeah, I guess the sort of stress and anxiety and depression sort of snuck up on me. Until one day I just, I realized I really needed some help. So I went to see a counselor at the university and I saw I just burst into tears after about just a few minutes of talking to the counselor and you know, I finally had somebody who wasn't my family or close friends somebody that I could just be completely honest with and actually just explain what was happening I had never really explained or described to anybody from the from the beginning what what was happening, and when I was going through doing that, I just I just sort of broke down into tears and that's when I realized that I was I was really suffering you know, I needed I needed I needed some help. So, yeah, I I gone through some tough times at university, and that that's when I started getting more help from my rheumatologist which we tried for quite a while changing to different non steroidal anti inflammatories or tried diclofenac one called  Naproxen, one called Taracoxip(sp) started on painkillers, tried all sorts of different things. And it didn't really help. It wasn't well it did. It did help but not enough. I was in a lot of pain. And one day at one day where my rheumatologist I just said, I don't know what to do, and I'm really struggling and kind of hack. Yeah, I just I just don't know what to do what what, what else can we do? And because oh, by that time I learned to sort of be more honest about what was going on inside me. Instead of just bottling it up and just trying to soldier on I was, I was much more willing to say, I'm really struggling here. I'm in a lot of pain. And so that's when he said, okay, James, I didn't realize you were struggling so much. Let's start you on this thing called Humira. So people who have as probably heard of biologics, and now you've obviously heard a biologic He cause he hadn't realized how much I was struggling because I kind of had an ear when I was younger even just saying out loud I'm in a lot of pain was quite hard to do because almost saying that makes it more real.  You almost don't want to say it because by saying it you kind of admitting that your life is not great right now

 

Jayson:

Saying it means you give into it, saying it to me. I completely understand what you're saying because as a young guy, it felt like anytime I said it to any level about my pain, that it maybe was defeating me that I was less.

 

James:

 Yeah.

 

Jayson:

I wasn't where I needed to be. I wasn't living up to what maybe my own expectations or others were. And so I completely understand that. It's, it's, and I don't know if women experienced the same because I just haven't had that conversation. But when I talk to other guys that have it, which is not that many. This is only second or third conversation I've had with people with it directly, it's kind of that you're showing that weakness you don't want to show. It's something that when I was young, there was nothing was gonna stop me. I was going to climb every mountain that was thrown in front of me. Well, this was a mountain. I couldn't climb, not by myself. And that was probably the hard part.

 

James:

Yeah, yeah. There's something about I think being especially I don't know, obviously, I don't know how compare but maybe being a young man. I don't know if it's harder than being a young woman. But yeah, I find it really tough like you to just to, just to realize and admit that you need help, that you're sad, you know, that you're, maybe you don't know how to handle it. You don't know quite what to do, because these are all the thoughts that I was having, but I was kind of bottling it all up, which makes it even worse, which makes it worse for sure. I mean, I think the I think is well known now that stress affects the immune system and affects your nervous system. You know, in fact, Your body this is this this really strong link between what happens in the mind and what happens in the body. And for sure if you're more stressed you are the more I think it I think it definitely makes it worse. Yeah. So getting on to biologics was was a huge thing for me. So the one I started on was called Humira and I'm so glad that I am so grateful that I sort of opened up and, and explained what was going through because I took the first injection of Humira and I was sort of told that maybe if, if it you know, it works for some people, that doesn't work for other people. Let's give it six to eight weeks, and we'll come on we'll have you back in and we'll see if you've improved. So I had my first injection and I wasn't, so I was, I was expecting this long, slow, possibly possible improvement, but what happened was the next day I woke up and I straightaway I felt something's different. I wasn't quite sure what it was. But after a few moments, I realized that I could move my neck, just the movement, my neck felt different. And I realized, all right, I can actually move my neck in look further than I had moved it than I could comfortably move it before. And it just took off. It was, it was it was just like a miracle. It was like this miracle cure out of nowhere, that completely took away my symptoms. I mean, for you know, I would occasionally notice it every maybe once a week or a couple of times a week. But for the most part, I could just I got my life back. I could do what I what I did before. It was Yeah, it was amazing. I even I did a half marathon which I would never would have thought of To to raise money for the National Ankylosing Spondylitis Society. So our half marathon called the Great North Run. And that happens in Newcastle where I live, so that that was just just amazing.

 

Jayson:

So tell me, what year was that?

 

James:

So that would have been 2010 by the time I got on to humera that was 2010. Okay, so you're a young guy, you started a biologic, you're having great success with it right off the bat, which is not unheard of. I know doctors like to tell you give it six, eight weeks, give it up to six months, and you might notice some difference, but I noticed not just Humira but biologics in general, if your body is going to accept them, it seems to be fairly quickly that they like that reduction, inflammation.

 

Jayson:

And so now you're young guy, you're on this biologic, you're feeling well, are you still on Humira?

 

James:

I'm not No, I'm actually on something called Cimzia or Certolizumab because what happened was after three years of being on Humira I started noticing my sort of background pains which were really Humira made it really minimal, almost gone but after three years I started noticing is it can is it gotten? Is it getting a bit worse and over over the space of a few months, all my symptoms came back I just got all the pains that are coming back the fatigue, and I knew I knew within about a month Oh, here we go. I I remember this I remember what this feels like. This is this is Ankylosing Spondylitis, coming back. So it's different for everybody but with biologics, and with anything to do with the immune system. The thing is, the immune system is so amazingly complicated. It scientists don't understand a lot about how it works. Still, and That's why these drugs affect some people. And it doesn't affect other people and people's. Some people have side effects some people don't. And it turns out some people become older. I don't think it's entirely known why but for some people, the effects start to wear off after a few years. And I just happen to be one of these people where for whatever reason, and it's not quite known wine, whether it's my immune system that has become almost immune to the, to the drug, or what I think there's a theory that my immune system actually starts attacking the Humira and destroying it before it can take effect, which is quite annoying, but for whatever reason, it all came back. And that was probably harder than that was harder to take than the original onset, because I knew what was coming. And I'd had these three years where My symptoms had gone down so dramatically. And I managed to get into work by that time I was working as an IT consultant. So I was had, I was basically going out to see clients working on projects, managing a small number of people. So do you know doing quite a lot, earning some money making a career, basically. And then this this, this Ankylosing Spondylitis came back, and I just, I was that was so that was so frustrating. It was so hard to take, because I knew I knew. Well, I mean, to be honest, I didn't know I didn't know what was gonna happen. What does this mean? Does this mean it's over? Does Humira never gonna work for me again? I didn't know. So I went back to see the consultant and explained that, yeah, this is some, this is something that happens to some people. But what we can do is try some alternatives, because you reacted so well to the first anti-TNF, we can try some other anti-TNF because some people who become resistant to one type, you switch them to another one, and it will work. And so we went through this period of trying a couple of different ones. But the problem was that when you try a new one, you have to try it for I think it was at least two months, or maybe three months to make because you got to make sure that it   really doesn't work. So I the next one I tried was called Etanercept I think. It's also called Enbrel, I think?

 

Jayson:

Yes, that's a street name is Enbrel. You know what it's advertised?

 

James:

Yeah, so that one didn't work at all. For me. It didn't it did nothing for me. But unfortunately, like I say, I had to stick through it for four months, just in case It took that long for it to take effect, but it never did and never took hold. So that didn't work. I tried another one called what was the next one? Golimumab(Simponi), I'm going to run down here. So got Yeah, Golimumab was next. And again, that didn't help. And so through all of this, it was pretty much a year I had the mother of all flare ups. And again, we don't really know why this happened. But for some reason, my all my symptoms just ran out of control the pain and the pain got so bad that I could barely get out of bed. My typical day would be a wake up, realize I'm in a lot of pain. I would take shedload of painkillers at the time. I ended up being on this opiates called MST which is basically morphine in a slow release form. So start my day with some morphine and some Non-Steroidal Anti-Inflammatories(NSAIDs).

 

Jayson:

Breakfast of champions there.

 

James:

Yeah, man. Yeah, that became my every day just waking up and just trying to get out of bed took took me about took me a few minutes to get out of bed I had this whole technique down, you know, I would sort of roll on my side. Very slowly. There'll be you know, every inch was sort of agonizing pain. Oh, yeah, slowly swing my legs off the side of the bed.  And then I would sort of go face first on onto the front of the bandwidth my legs, man, you know, so I could sort of, I would end up kneeling with my face on the bed.

 

Jayson:

 You are the only other person that's ever said that to me that understands. It would take me 20 minutes to get out of bed. Some days.

 

James:

Yeah!

 

Jayson:

And that was the exact way I had to do it. You and I had to use one of my legs to swing imagine laying on your back, crossing your legs and then using your one leg to move the other leg,

 

James:

Yeah!

 

Jayson:

To keep your hips as straight as possible to keep that pain from sending you through the roof.

 

James:

Yeah, that's it, man. I fell you. Yeah.

 

Jayson:

Wow, that's unbelievable.

 

James:

Yeah. So getting from the bed to the sofa was the main thing that I did that day, you know, first and this went on for about eight months. I was like that.

 

Jayson:

Wow. So did you have to? Were you able to still work or did they pull you out?

 

James:

No, no.

 

Jayson:

Did you go onto disability?

 

James:

Yeah, I was on I got a certain amount of call occupational sick pay in the UK? Uh, yeah, I couldn't, I could bail. I could. I couldn't really do anything because with the, with the painkillers on top of everything. I was I was also very fatigued, so I couldn't even really concentrate on anything, I was so tired.

 

Jayson:

So you had Humira which you had good luck with then after about three years that wanes off and then you were put on to Enbrel and Simponi which are the generic, you know the sales names for them and then when did the doctor finally say hey, look, we're gonna try this Cimzia on you?

 

James:

Actually, there was another one on the event. Yeah, the one I was really lucky because my my consultants were, they really went to bat for me in when it came to being able to try different ones. I didn't realize it was possible, but they they managed to get me on one called infliximab, which is called, also called Remicade, Remicade.

 

Jayson:

That's the infusion.

 

James:

That's the infusion. Yeah, that's the one that finally started to work for me. I'm just extremely grateful that something started to work because I was in a, I was in a really bad spot. It was a really dark time for me. Just losing all my sort of sense of purpose because I couldn't work sort of a, you know, going through kind of a grief at the I lost, I lost my, my sort of life in my career that I knew when I was going through my that the worst part, I decided that if I ever I didn't know, I think I at one point, I thought, I'm never going to get back to work again. I'm in such a state, you know, this, this is it. I'm going to be like this forever. And I made a promise to myself that if I ever did get back to work, I needed to find something different. something different to do, because what I was doing was interesting, but I didn't love it. And I really I realized that to be able to work and have chronic pain and live with as it needed to be something that I really loved to do and needed to be something that would drive me to get out bed in the morning, because that's what I, I wanted to do. It needed to be something that would would motivate me and drive me It couldn't be just a job that I did just for the sake of a salary, I realized I needed to find something different. That was a there was a passion. And so when I eventually got on to infliximab, and it started to start to take effect, and actually a my, also a combination of that. And I found out that I was very allergic or not allergic, but my, my digestive system was very intolerant to onions and garlic. It's something that my GP suggested that I try, because at the time, I don't know if you know, but there's this association with ALS and things like IBS and Crohn's. There's a strong link and I was having a lot of digestive problems, which I don't think was helping helping the my immune system and One thing that my my GP suggested was diet called the fodmap diet. fodmap diet is a acronym It stands for, I can't remember but it's a certain category of carbohydrates that are found in various fruits and vegetables. And for some people, you just some people can't process those types of sugars and carbohydrates and so it creates it creates gas and and inflammation in your in your digestive system. And I tried cutting out onions and garlic which turns out is in everything because at the time out because I couldn't really I couldn't really do much. I was having a lot of soup from the supermarket has easy that I could stick in the microwave and heat up and it turns out most soup is like 60% onions because it's a cheap staple that tastes are right. And it works well in soup. And so what I was doing was I was just piling in onions, which my digestive system just didn't like at all. And so once I realized that I cut it out, I started feeling my just my started feeling much better. So that I think that actually helped a lot as well. So yeah, I eventually got back to work. And my my work was really good in helping me get back to work. I had to take things really slowly. I started part time, just a few hours a week initially interested and I was able to slowly build back up, but I was already starting to think of other things to do. I eventually went to University, the University in Newcastle upon Tyne, where near to where I work, were offering people basically training for people who would been in industry and wanted to come back to to sort of go back into academia and potentially do a PhD. After this training, and they were offering a living allowance to do that, so I, it sounded interesting, it sounded something that I could really get into and that I would enjoy. And it was also something that I could work, I could work my own hours, which for me was was really important, because my flare ups were coming, you know, just completely random times. So I was bad, but I was I still was struggling quite a lot. So I ended up quitting my job, which was one of the scariest things I've ever done and went to was did this training University. And while I was doing that, I started getting interested in business and electronics and programming because I had done a lot of programming before but again, we our opportunity to get back into it. And I started, I wanted a little side project to do. And so I started creating this mobile app to record my symptoms because I had had this real problem while I've been going through this this this really bad period of how do I get across to my doctor? everything that's happened when when I go to the appointment, I'm tired. I don't really remember what happened to me. You know how I like to describe it to people is telling, describing your chronic pain to your doctor is kind of like describing the weather to somebody for the past six months. So because whether it's something that you experience every day, you know, you look out the window, you go outside, you know what the weather's like, you experience it. It's cold, it's hot, it's rainy, whatever. So remember today, you remember yesterday, but what the weather was like last week, couple of weeks ago, a couple of months ago, six months ago. I have no idea. And I think people can relate to that analogy. That's what it's like trying to explain to your doctor, how much pain you've been in, you know, you lose all of the details.

 

Jayson:

So once you've got design ideas, I'm gonna just make this mobile app just something to screw around with tracking just my own pain that became the basis for Chronic Insights?

 

James:

It did, yeah, I took it to my doctor. And when I showed him because I printed out this graph, and when I showed him this graph of my pain, I just, I immediately saw his eyes light up, he was really interested in it. You know, he, he, he looked at it, and I could see the, I could see his eyes, taking it in and processing it. And I think what he was thinking was, wow, this is a lot of detail. I can just look at this graph. And this just shows me instantly what it's like. You can see the ups and downs you can see, maybe there was a big period there where it was really high. You could ask me about that. That would remind me of Oh, yeah, that's when you know, I did too much because I was doing some gardening or whatever it was, and the next day I was I was really bad. And so we would start a conversation about what what can we do to prevent that in the future. Maybe we can do some physio to strengthen your your thigh muscles. And that's when I realized this actually is really useful. I was looking at like, as I was looking at other apps at the time, as well, and I didn't really like any of them. And I thought, you know what, I want to I want to make one that is everything that I need. That is better than everything that's out there, because I think I can do this. And that's where all kicked off. So I, I left university, I started my own company, Chronic Insights. And a year later, this is where I am, I've got a beta version. I'm starting to get people using it and it's really exciting.

 

Jayson:

And now for the people listening. There's two versions of this and they'll both be built out. There's two versions of this and they'll both continue to be built out as we go through time, what I found is that for anybody on an iPhone, you download the app called test flight. And then they can then get access to, as you said, it's in beta, so they can get access to it and use it. And it's, it's fully functional. For the free version. There is a premium version that has a monthly fee to it. And I haven't even asked you what that monthly fee is yet, but there's a fee to it. And that's going to give,

 

James:

$3.99 a month. That's British pounds. So where is that in dollars? So about $4.90 - $5ish a month? Yeah, American money, yeah.

 

Jayson:

Okay, so

 

James:

All I mean, so that's the, sorry to interrupt, that's the monthly price, but there's also a yearly subscription, which is cheaper, overall 35 pounds for the year, so.

 

Jayson:

Tell us a little bit about the difference between if I'm using the free version, what am I going to see if I upgrade?

 

James:

So the free version, you can record up to two symptoms and you can use a couple of the basic, I call them virtual mannequins. These are the ways that you can record the physical location of your symptoms with the premium version, you you get unlimited symptoms, you get a greater range of the mannequins to use you can see your symptoms animated over time. So you get these special Yeah, animations that show you visually how your symptoms shift and change on your body. So this Yeah, as we say, there's this basic version, which you can use for free, or if you like it, you can sign up to the premium version. And this is it we should mention that this is this is still a beta version. This is the first real iteration of it. So the idea is I'm going to throw it out there. I would love people to download it and try it but even more importantly, give me feedback. Let me know what's good. What's bad? Is it too expensive? It's, I've we've set it at 399 a month. So that's British pounds. So that's that's about what what is that in US dollars, about $43 for an annualized fee? At the Americans, it's about paying for, it'd be the equivalent about paying 409 months, little over nine months and getting three months free. At its current price. The annual is cheaper than the monthly which is kind of a common thing again, in Apps these days, because I you know, I've quit my job to do this. So I need to make money doing it. It needs to be economically viable for me to continue doing it. Oh, sure. Well, one thing that it that I'm very, I'm very passionate about is anonymity. So a lot of apps out there, record as much information about you as possible. Things like your name, your age, your email address, you have to sign in with a password that might track your IP address your location, because all of this is valuable information. And they usually if you look in the privacy policy and terms and conditions, and they'll mention there that they have the right to sell that information to third parties. And and this is something that I, I was never happy with. Personally, I think it's a form of sort of stealth surveillance. And it's a way that a lot of apps make their money is kind of behind your back selling your day to people that you don't know. That's not what I do. What I do is I just, I do collect data from users using the app, but it is truly anonymous. The only thing that I know about you as the user of the app is a random anonymous identifier that's generated when you install the app that That's it. I don't record IP address or location or any of this extra stuff because I don't need that information to to improve your life. The reason I collect the information is because what I want to do is to be able to use that to raise awareness. What people with chronic pain and chronic fatigue and other conditions, what they go through, and also to show us as a community what other people are experiencing. You know, I would love to know what on average what are the what parts of the body into people with ankylosing spondylitis have problems with what things do they track that they think might affect their symptoms? Is it things to do with diet? Is it exercise? CBD people's trying CBD, for example, something that I've always been interested in trying but I have no idea if it would help or not. It'd been interesting to see On an anonymous aggregate level, what other people are doing. And so because I, I am taking this approach, I'm not making money off of people's data, I'm making money purely on the subscriptions that people hopefully will sign up for, because they see value in the app. And if it turns out that that value proposition doesn't train with people, then I'll have to, I'll have to change things up a bit. I'll maybe I need to improve the app or change the features, maybe look again, at subscription level. So at this early stage, things will change. So people downloading the app have the opportunity to to be part of making it better contributing to to what I'm doing and who knows, maybe if you suggest a feature that you would like to see in the app, I'll think that's a great idea and I'll put it in.

 

Jayson:

Well that is awesome. So for anybody listening, in the link in the show notes I am going to have how to find Chronic Insights. I'll have a link to your website, James. And we'll have that way people can go in and read about it. You can also find it by just searching both the Google Store. I think that's how the Google Apps are done as in a store. Yeah, the place to play store. That's I'm sorry, I couldn't get the name of it, the App Store on iPhones. You can see it, but you have to have testflight to actually use it, which is a free app to download.

 

James:

Yeah. So if if people want to try it out, that would be great. And they can go to my website, chronic insights, calm, and all the instructions are there on how to get it like you say, Jayson that with if you're on Android, it's a bit easier. All you have to do search in the Playstore for Chronic Insights, and you'll see it pop and it'll save that it's an early version. That's how Google does beat as you can just download it, but it labels it as by the way, this is still work in progress. Apple do it a little bit differently, you have to use this app called test flight, which you use that to download the beta. And for that you need a special link, which is, which is on my website. All you have to do is just click on that link, and it'll download after you've downloaded testflight.

 

Jayson:

Yeah. So just go to the show notes. It will take you to chronic insights website. Actually, I'll also have a link to it on my website, which is spondee podcast calm, and it'll direct you once you click on that link, it'll direct you over. And then we'll, we'll hopefully get enough people using this thing in a beta format to show you what you need to tweak it to just continue to make it better.

 

James:

Exactly. Yeah, I would love people just to bombard me with emails about problems with the app, things that don't like about it, anything like that.

 

Jayson:

Cool. We've got a great opportunity here. For those of us with Ankylosing Spondylitis, or Crohn's or fibro, lupus, any type of disease that you might have any type of autoimmune issue that you might be dealing with, or even not on all mission, you know, arthritis type issues, we've got a great app here that allows you to just completely track where you're having your pain, to give a better view for your doctor to give your doctor a better view of what you're dealing with on a day by day basis. So I have not seen an app quite this good. And it's only in its beta stage. So it will get better as we get more people to help James to to flesh it out a little bit. So I'd encourage you to go to the show notes. Follow the link. James is really accessible via email right through the website and reach out, give them suggestions, give them feedback, good and bad, needs to know what's good, what's bad, what's working, not what's good and should be smoothed over. So that this app is better for all of us with Ankylosing Spondylitis. Listen, he gets it. He's got it. So you're not telling somebody that is unfamiliar with your condition. What you're dealing with James is going to understand it. And for that, I think that's fantastic to combine. Not that you have ankylosing spondylitis, but just that you understand and can really use that as you develop this app.

 

James:

Absolutely. Yeah. Thank you, Jason, thanks for your support, and your kind words and a big fan of your show. I appreciate all the work that you do behind the scenes. I don't know if people realize how much time and effort goes into producing this podcast, but I know it's a lot. So thank you very much. That's my pleasure.

 

Jayson:

We're gonna have you on again, we're going to talk more because I really think this is something that is very valuable to the community as a whole. And so I'm gonna really work with you. I want to get this into people's hands. I want to see people tracking what they're doing to be able to track turning over their doctor and say, here's a report of what I've been like the last six months. I see it online all the time. People say my doctor doesn't believe me, my doctor doesn't know. Well, if you're giving them empirical data, they can't, you know, they can't say this doesn't exist, they can only overlay it with your MRIs, your x-rays and all your other testing.

 

James:

Absolutely. The power of something visual that you can take with you is, is it's real, it's real. And it can give you confidence as well make it make it a lot less stressful going into that doctor's appointment

 

Jayson:

Very much so. So again, I’m speaking with James Allen, chronicinsights.com is the website

 

James:

and on Instagram @chronicinsights.

 

Jayson:

Yes, @chronicinsights on Instagram. I'll have all of that in the show notes. So if you're driving at work, wherever we can't write it down, just come back to the show notes. I'll have links to everything so that you won't have missed an issue. Won’t miss anything. It'll take you directly to finding James online. And I really thank you for your time and man after this conversation. You're gonna need a nip Kip,Kip no a nip is a drink of beer, drink of alcohol. Kip.

 

James:

So I it's a pleasure. You have a great afternoon.

 

Jayson:

You too man.

 

James:

Thank you speak soon bye!

 

http://www.chronicinsights.com

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