An incredible patient journey

My story as an athlete started when I took up running at seven years old. I was a middle distance runner for several years but when I reached my mid-teens I started experiencing problems with my shin, where I had inflammation between the bone and the muscle behind it, from below the knee right down to my foot. I had this issue for a few years and, although I tried various treatments, by the time I was 18 I had stopped running regularly. Of course, by that age, I had other interests and I just ran when I could. I tried other sports, like Taekwondo, for a few years and then I had children. I always had periods of running recreationally but I thought that was it for me and competitive running. And then, about 13 years ago when I was in my early 40s, I took up cycling.

Initially, I started cycling on a mountain bike and, at first, I really hated it! But my boyfriend at the time was really into cycling and it was a natural way for us to spend time together. I’d trained since childhood so exercising comes naturally to me and I discovered I was actually quite good at cycling! So I started entering races and did quite well. When I was in my late 40s, having been cycling a couple of years, I took up running again but, once again, I quickly started getting injuries.

The start of my pain

I suffered with plantar fasciitis for two years. My clinicians couldn’t tell me why I had it but it was very painful; I had nocturnal pain and often couldn’t walk properly when I first got up in the morning. The treatments I tried were pointless; I tried platelet-rich plasma (PRP) but it didn’t seem to make much difference — although it was hard to tell what was working and what wasn’t. After a couple of years, I had some custom insoles made for my shoes and I could suddenly run again — and for longer and longer. After that, when I experienced a little pain after running, I would treat myself with focused shockwave therapy.

When I turned 50, I decided to take up triathlons. I took swimming lessons to learn how to front crawl, as I’d never been taught that, and I started entering local and regional competitions; they were just short distance races at first before I moved on to Olympic distances and then half distances. I never did the full Iron Man distances as I was concerned that, with my old running injuries, that training capacity would be just too risky for me.

Coming to a head

The situation came to a head after I’d competed in the 2017 Ironman 70.3 World Championships in the USA. I’d tried not to run too much or for too long in advance of that and I’d slowed down my training. I also used strong doses of ibuprofen to help with the pain in the run up to competitions, but it was still quite severe. I remember that I was staying in a hotel during the World Championships, and I recall having to go out to buy some ice cream which I held against my knee with string in a bid to cool it down and ease the pain... I was in so much pain and I knew then that I really shouldn’t continue. I’d already been diagnosed with knee OA about six months before the World Championships but, at that point, my condition hadn’t been too severe. I’d had some treatment, some cortisone injections into my knee. I’d been seeing a rheumatologist who’d been a triathlete himself and we’d discussed the prospect of me retiring from competitive running, but I wanted to keep on going until I couldn’t.

When I came home from the World Championships, although I was suffering with my knee, I ran in two or three trail competitions. In hindsight, I shouldn’t have done this because after that my knee was finished. It hurt to go up and down stairs or to walk any distance. It was not good — my knee was severely swollen with edema in the bone. I knew I needed to speak to people who knew more about what I was experiencing.

I found another Danish athlete, a former ski runner who was living in France, who’d had a treatment called lipogems. This is a stem cell therapy which involves fat cells being harvested from areas of the body and then injected into the knee. So, as it wasn’t available here in Denmark, I went to Poland to have this treatment myself. They took fat cells from my thighs and injected it into my knee — but I experienced no effect at all. My specialist then suggested I try PRP again to see if that gave me a boost but I wasn’t keen as I’d only experienced minimal relief when I’d previously tried it for my plantar fasciitis.

Nothing was working for me. All the treatments I’d tried before had only provided me with symptomatic, short-term pain relief. I’d tried steroid injections and they gave some pain relief for two weeks to a month, when I found I could run normally again, but the effect hadn’t lasted. The specialist who’d recommended the treatment in Poland had already looked at my knee for a second time and rejected surgery as an option because my left knee was now too badly damaged. We’d also talked about me having an artificial knee which I considered for a while but he and I both thought it was too early in my prognosis and too risky; I know some people can run with an artificial knee but I felt it wasn’t worth taking that chance. As a trained nurse, my view is that there’s always more possibility of experiencing problems when it comes to surgery.

Everyone I talked with in Denmark told me ‘we have nothing left to offer you’. After that, I just gave up on the hope of finding a treatment. I was quite sure I needed something inside the knee to take the pain away but I was trying to find a solution and it just wasn’t happening.

At this point, I wasn’t running at all and then I was forced to stop cycling for three months when I developed a Baker's cyst at the back of my knee, causing my knee to become incredibly swollen and irritated. So I wasn’t allowed to do any training at all — and this was a major setback for me.

It was devastating actually.

So much of my identity is combined with my sport and it took a long time to come to terms with the fact I couldn’t do what I loved anymore. It affected my relationship and also my work; I’d had a great career with a challenging, high-pressured job in the community and I’d given this up, changing roles in order to be able to commit more time to training twice a day before the World Championships — and now I couldn’t do that. I also started to actively avoid doing things that I knew would make my knee hurt. I learnt to alter my behaviour.

Discovering Arthrosamid_^®

And then an acquaintance told me about Contura and explained that the company was about to launch a treatment that might help me. So I started researching and following Contura online so that I would be aware as soon as the product was launched. I discovered that one of the doctors who’d treated me before was actually involved in the trials for Arthrosamid so I contacted him to see if it was worth me trying it. He’d trialled Arthrosamid® on himself and, having had the same symptoms as me, was now able to run 5 to 10km once or twice a week so he thought it was definitely worth me giving it a shot. He explained how Arthrosamid worked and gave me the reassurance I needed that it was worth exploring as a treatment option. I then managed to get in touch with a key person within Contura who was really informative. Two weeks after my conversation with them, on 25th May 2021, I had my injection.

Immediately after treatment, my knee wasn’t swollen at all, but I could definitely feel something ‘extra’ in my knee joint and it felt a little tense — but I didn't have any pain. My consultant told me I could try running after a couple of days to a week post-injection, but I actually waited nearly a month before I went for my first run; I was a little nervous to test it out! I just started by walking down the stairs and then, on 21st June, I did my first short run along the pavement outside my building. I think I only ran for 600m that first time, and combined that with walking a little, running a bit more, and then walking again… My legs felt a bit stiff because I was afraid to put too much weight on my knee and I was scared that the pain would come. And it did actually but it wasn’t excruciating, and I could run again for the first time in years, albeit slowly and for short distances.

After that first run, I was still a bit tentative but I felt I’d got off to a good start; I could run for a few minutes and I didn’t have any pain afterwards. A couple of days later, I tried again and it felt OK so I did the same two days after that and, again, it felt OK. I slowly felt more secure in my abilities so I started attempting longer distances and going out to run in the forest again. A couple of weeks after that first run, I started accelerating a little and running a little longer. Three months on, I had no pain at all when I was running straight or on asphalt.

I then went on a cycling holiday, returning to Morzine which is very hilly! Here I found that, whilst I’d experienced some pain and swelling to my knee during and after the same very long, steep rides when I’d done them the previous summer, this time around I had no problems at all.

Now, almost four months on from my treatment with Arthrosamid®, whilst I’m not completely free of pain, it’s nothing like I was experiencing before. If I run in the forest or on unstable ground, where I might have to jump over a hole or a branch or something, then I might sometimes feel a sting in my knee but it’s bearable — and it just reminds me to be careful!

It’s difficult to explain how I feel about Arthrosamid® and the effect it’s had on me. Going into treatment, I was obviously hopeful it would work but my expectations were very low after everything I’d tried before. It felt like my last chance. But now I’m very happy because, after a three and a half year break, I can run again and I love running — especially in the forest! Whilst cycling is very nice and you get to travel longer distances and see more, it’s not the same as running in the forest. It's a quite a special feeling; the flow in your body, the smells and the sounds around you… It's just great.

Being able to train is also very important for my mental health — I like to have the feeling that my body can perform and Arthrosamid® has given that back to me. Before treatment, the pain I would experience when running meant I couldn’t even run for a bus. In fact, when I started the treatment, I said that if it made it possible for me to run just 5km twice a week, I would be happy. I’ve taken it slowly over the last four months but I’ve now achieved that goal.

Given my nursing background, I see Arthrosamid® as an alternative to having knee surgery — you can push that operation further down the line for the patient, if they even need to have surgery at all. That’s a big plus for the healthcare sector. More importantly, patients like me won’t have to experience a reduction in their quality of life or forgo all the things they love to do whilst they wait for surgery. I really can't see any reason to hesitate in having treatment with Arthrosamid®.

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