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...