Arthritis, running & me

Those of you that know me will probably have an idea that I like running, and that I spend a lot of time doing it, thinking about it or talking about it! It’s one of the things that shapes my life. 
Another thing which has shaped my whole life, that I don’t always talk about so much (and in recent years don’t *have* to think about much either) is that I have chronic, and what would probably be considered severe, psoriatic arthritis. 



Running and psoriatic arthritis, don’t seem like a match made in heaven really do they?!



This is my story…



I was a little ‘dwt’ of two when my parents first started noticing that there was a problem. My thumb and finger on my right hand would get hot and stiff and were obviously bothering me. I have very vague memories of visiting a small hospital - that was when it was decided that I had juvenile arthritis. 


A few years later, I was aged 6 and the arthritis was spreading to my knees and other joints. I lived in Cardiff by then and I was taken to the Heath hospital where I vividly remember being subjected to a blood test. Things were clearly more serious by this point as I was given a tablet to take every day which made me sick (I now know it was methotrexate a form of chemotherapy), along with physio, hot & cold therapy, horrible leg splints which I had to sleep in. I stopped the tablets after a while because I was so nauseous, and I think being a child I just got on with things, and was told I would grow out of the arthritis.



I don’t have any particularly bad memories of my arthritis when I was a child other than hating the splint I was made to sleep in, and not being able to kneel like the other kids. Other things stick in my mind like when my mum had read that cow’s milk was bad for arthritis so she got me soya milk to drink instead (which in the 1980s was even more vile than it is now.) However, she carried on buying cow’s milk for my dad and so I would sneak into the kitchen and drink it surreptitiously from the fridge!



I got on with growing up, developing a keen interest in sports once I went to high school. Hockey, netball, athletics, I was happy to try anything and unlike some people, I looked forward to PE lessons. Later in my teens I started going to the gym and doing aerobics. I don’t remember my arthritis ever holding me back. I knew I had it but I assumed I was growing out of it as I had been told I would…



Sadly this was not the case. There was to follow a series of events which are a big ‘before and after’ to my life. At 17 I had left school and gone to do my A-Levels at a local college. When I left school I also left most of my sporting activities behind too. I had new hobbies; socialising and drinking. I also caught glandular fever which really hit my body hard and took a few months to recover from. Lastly I got hit by a car. Nothing broken, but black and blue literally from head to toe. I will never know if it was one, all or none of the events above which brought my arthritis back; all I know is it did come back, and this time it was serious.

The swelling, stiffness and pain in my joints was horrific. 

As it was deemed that I had grown out of my arthritis I was not under that care of a consultant at that time, meaning that I had to wait to see a Rheumatologist for several months. In the meantime, all the GP would give me was huge pink ibuprofen tablets. I can tell you now, even on a maximum dose, ibuprofen does NOTHING for severe inflammatory arthritis.

Once I eventually got to see a Rheumatologist to my surprise I was diagnosed with psoriatic arthritis. I remember having an itchy scalp as a child but nothing more. (I developed actual psoriasis on my skin much later on so I don’t really know what kind of divination the doctor used to diagnose me.)



Here is some information from Versus Arthritis about Psoriatic arthritis:


It can cause pain, swelling and stiffness in and around your joints.


It affects about 1 in 4 people who already have the skin condition psoriasis.
Psoriasis causes patches of red, flaky skin which is covered with silvery-like patches.


Some people may develop psoriatic arthritis before the psoriasis is even present.

In rare cases people have psoriatic arthritis and never have any noticeable patches of psoriasis.


Psoriatic arthritis and psoriasis are both autoimmune conditions, caused by a fault in the immune system.
Our immune system protects us from illness and infection. But in autoimmune conditions, the immune system becomes confused and attacks healthy parts of the body, often causing inflammation.


Psoriatic arthritis is a type of spondylarthritis. This is a group of conditions with some similar symptoms.
https://versusarthritis.org/about-arthritis/conditions/psoriatic-arthritis/



So what next. As I’d already known that I had arthritis I don’t remember it bothering me very much.  I think when you are young you sometimes just accept things and carry on.  I was prescribed a “Disease Modifying Anti-Rheumatic Drug” called Sulphasalazine (which I have now been taking for 28 years) which along with some NSAIDs (non-steroidal anti inflammatory drugs) got my arthritis back under control. 



Over the next few years my arthritis was up and down. After getting my socialising/ drinking/ going out period out of my system, I resumed my fitness activities -  going to the gym and swimming regularly as my dad paid for a gym membership for me. Running was something I only ever did to warm up at the gym – I used to think 15 minutes was a long run. It is now understood that exercise is not something to be avoided when you have arthritis, it is to be encouraged as it helps manage your symptoms. It keeps you strong and your joints mobile.

I did have flare-ups of varying severity. Sometimes just a bit achy, other times really sore and swollen. My Rheumatologist eventually persuaded me of the benefits of drainage and steroid injections in the joint. Not an experience I was keen for, but once I had one I was a convert as it helped me feel so much better. It got to a point where I would be the one asking him to stick an enormous needle into the middle of my knee joint.



What was clear though, was that being active definitely helped. My husband and I went on a six-month camper van trip to the USA and I was really worried that I would have a flare up whilst we were there. I persuaded my Rheumatologist to prescribe me enough meds to last 6 months (I think I had a letter to show to customs if I was stopped). But for the entire trip I was incredibly well. Outdoor life agreed with me. Hiking, healthy eating and fresh air is a remedy for a lot of things.



My life was to change forever a couple of years later with the birth of my first child. Pregnancy hormones can ease many illnesses and diseases and this had been the case with my pregnancy. However, after the birth I had one of the worst flare ups of my life. It took a long time to control the flare and within  a few months I was pregnant again. After the birth of my second baby I was ready for the flare and resumed my meds more quickly.  I started exercising again when I discovered the local leisure centre had a creche a few mornings a week. But my Rheumatologist was concerned that my PsA was progressing, and because of my young age, and the degenerative affects of active arthritis,  he prescribed me what is called a Biologic anti-TNF medication called Humira, which targets and blocks certain chemicals or molecules in the inflammatory process. The medication is self-injected fortnightly or weekly.

Humira was like a miracle cure from the first dose. I can only describe it as like a switch. Sometimes you don’t realise just how bad you are feeling until you suddenly aren’t feeling like that anymore.
It was that life changing for me. The constant ache had gone. Suddenly there was the realisation, “This is what it feels like to be normal”.



A few years later we decided to have a third baby. I had to stop all medications a few months prior to trying to get pregnant and it was horrendous. By the time I actually was pregnant I could barely walk. Using my hands was painful. What a reality check. To think that would be my life without my medication. I was prescribed steroids as a ‘safe’ medication for baby and waited hopefully for the magic pregnancy hormones to kick in but they never really did. I had barely been able to exercise at all during the pregnancy and by the time I gave birth I felt awful in myself.



My baby was nearing a year and although my PsA was again under control, I hadn’t really got back into exercise. I was taking my boys to a class each week for an hour – too far away to go home again and pick them up so I was just sitting around chatting. A couple of the other mums started going for a run during the hour and asked if I wanted to come along. “No’ I said, “I can’t run.” It had never occurred to me to even try, as clearly I couldn’t? People with arthritis can’t run. It’s bad for your knees! (Not true).



But my friend persisted and eventually I gave in. I don’t know how far we ran or how long we took on that first evening. I didn’t track it. I had on some old trainers I’d been wearing for years, some leggings which fell down. Looking at the route which became our regular I think it was about 7k. Not bad for a first run.



My friends were training to run a marathon and their enthusiasm for running was certainly infectious, I went along with them every week and started to miss it if I didn’t.  I went for my first run by myself after a couple of months which felt like a huge turning point. I was soon running a few times a week. It was also around then that I started to run during daylight. To me that seemed quite a big thing as it meant people could see me.



I took part in my first race in March 2016. I decided to sign up the week before. It was the World Half Marathon in Cardiff and I’d only ever run 6 miles. My friends were running it as part of their marathon training and I became completely caught up in their excitement and decided to just do it. Not a sensible decision, but I was confident in my fitness levels even if I didn’t know what it felt like to run anywhere near 13 miles. Despite it being a hideous weather that day I absolutely loved it and finished in 2:18.



Six months later after following a training plan I ran the Cardiff Half in 1:59. I had never felt so well or so fit in my entire life. Instead of making my arthritis worse as I had always feared running might, I actually felt better. I could run despite my arthritis, and it turned out I was reasonably good at it.



I ran quite a few races over the next couple of years but things went up a level when I won a space at the London Marathon via a New Balance promotion, having already entered the inaugural Newport Marathon for 2018. I took on a marathon plan and worked through each week. All was going well….too well perhaps. Humira, the biologic medication I injected to treat my PsA is quite a serious immunosuppressant which is not to be taken lightly.




I went for a birthday weekend away for a friend’s 50th a few weeks before the London Marathon. I had a bit of a cold but I was looking forward to celebrating. I had a few drinks on the Saturday night (but not that many.) On the Sunday morning I felt awful and I spent the journey home heaving into a plastic bag in my friend’s car. All very embarrassing but I just assumed it was down to drinking more than I realised and having a cold.

I was under the weather for a couple of days until the Thursday. My husband was working a late shift and I remember thinking to myself about 6pm that I had to go to bed. It was as if a wave hit me and I could barely stand up. Somehow I got my daughter into bed and told my sons to sort themselves out. I spent the next 36 hours in bed, sweating and occasionally crawling to the bathroom to be sick. It was all a blur. 


On the Saturday morning I got scared. I couldn’t even hold water down and I felt like I was going to die. My husband phoned the out of hours surgery for an emergency appointment, and my mum to come to take me there. I staggered to her car in my PJs and dressing gown, I was beyond caring. The GP took my medical history and as soon as I said I was on Humira for my PsA he nodded his head. By a lucky circumstance he had done some of his residency under my own Rheumatologist so knew the potential side effects to the immune system very well. What would have happened if I’d seen a GP who didn’t have that specific knowledge I really don’t know.



“You have the beginnings of sepsis so I’m going to get you admitted to hospital right away.” I was sent to the Emergency Assessment Unit at the Heath and admitted immediately. I can’t remember my mum’s reaction but this is what she said about it “I thought you were going to die in my car on the way, it was the most terrifying couple of journeys! And even when we got to hospital everything seemed to happen so slowly, you didn’t start to rally until the evening….”


Blood tests at the hospital revealed my CRP levels were over 400mg/l. Normal levels are around 3mg/l. I was given IV antibiotics and kept in for 2 nights. They would have kept me in for longer but I was keen to get home to the kids.



Three weeks later, somehow, I ran the London Marathon. It was an amazing day. The hottest London Marathon on record was not what I had expected. I paced well for the first half (2:15) but in hindsight with the heat, that was much too ambitious.  From halfway it was run/ walk all the way to the end, alternately throwing water over myself or drinking it every mile. There was absolutely no way I was going to give up.  Coming around the Mall past Buckingham Palace was an incredible experience. I was completely exhausted and staggered across the line. Then the tears flowed. I had run a marathon! It had taken me 5’27”.



Just one week later, on a rather chilly and overcast day I ran Newport Marathon, knocking 37 minutes off my time from the previous week. Two marathons a week apart, 4 weeks after suffering with sepsis.



2019 saw two more marathons, this time more sensibly paced 6 months apart. I got my marathon PB at Manchester of 4:26 and also ran 4:28 at NYC.

2020 was a bad year all round.

In 2020 the Covid-19 pandemic coincided with my meds stopping working. It all stemmed from being switched to what’s called a ‘bio-similar’ adalimumab medication, after the patent ran out on my original medication, brand name Humira. Once a patent runs out on a branded biologic medication, then other companies are allowed to start producing a cheaper, bio-similar version of it. The NHS is obviously keen to save money wherever it can and would have switched many patients over at the same time. Inevitably there will be small differences in the recipe or ingredients, which, as anyone on long-term medication knows, your body can and will notice.  My body did not accept this new medication, I was in constant flares, and after a few months my Rheumatologist authorised me to go back on Humira - but it was too late. The body can develop anti-bodies to the biologic medications and it appears that is what has happened to me, probably because of the disruption to my treatment. I had 10 great years on Humira, but my body wasn’t accepting it anymore. 



It wasn’t until over a year later that I finally got given a new medication that worked. A year of my life spent in pain, my joints being damaged by constant inflammation, with numerous hospital appointment and steroid injections in my joints. After the failed switch back to Humira, I was given another medication which didn’t work either - but both had to be tried for 3 months to give them a chance to work - torturous. My running was sporadic; when I’d recently had a steroid I felt great again, but it wears off very quickly. 

Finally, in February 2021 I was given a new combination to try: Methotrexate and Benepali, both to be injected weekly. As with Humira, from the first dose it was like a switch. Literally within a day or so the pain and inflammation was gone. I hadn’t been running for a couple of months as my joints were just too painful but I can remember the day after I’d had my first Benepali dose I went for a quick walk by myself on Caerphilly mountain. And that’s when I realised the pain had gone. I remember just being in tears up on the mountain as I was just so relieved.

If I ever get told that they are switching my meds to a bio-similar version again I will fight tooth and nail to prevent it.



It took me a couple of weeks to truly believe that the meds were working, but once I’d accepted that they were I was keen to get back to my running, but wanted to do it gradually. I downloaded the couch 2 5k app and on the 1st March 2021 I got on with it.

Six months later, as a celebration of my return to running, I ran my first ultra, the Pegasus Ultra Running RIDUM 30 miler along the Rhymney Valley Ridgeway Walk. (An ultra-marathon is any race that is longer than a full marathon of 26.2 miles).



I haven’t looked back since. I have been stable on my medication combo for over 4 years now; in that time I’ve run a further 5 marathons (Chicago, Berlin, Radyr, Eryri & Machen) taking my total to 9, and I’ve completed 7 Ultra-marathons (RIDUM x 2, VOGUM x 2, HOWUM, PIGUM, Bigmoose ultra fun run, bagging a 50k PB of 5:55).



This year is the biggest challenge yet. On August 2nd I will run the EDDUM 50 miler, following the Epynt Way around the Sennybridge Military training area, in the heart of Wales. With over 2,700m of elevation across the course it is going to be a beast. One thing I know about myself though is that I don’t give up easily. Step by step I will get it done!



Then next April 2026, I get to bring my endurance running journey full circle and once again take on the London Marathon, this time for a cause that means such a lot to me personally. If it wasn’t for medical research, I simply would not have done any of the things I’ve written about above. I would not be running; it’s doubtful as to whether I’d be able to walk that well. My life revolves around being fit, healthy and outdoors. Without the medication which corrects my faulty body I would live an entirely different life. I would struggle with basic tasks to look after myself and my children.



That is why I’ve chosen to run and raise money & awareness for Versus Arthritis:

 “There are over 10 million people living with arthritis. That’s one in six, with over half of those living in pain every single day. The impact is huge as the condition slowly intrudes on everyday life – affecting the ability to work, care for a family, to move free from pain and to live independently. Yet arthritis is often dismissed as an inevitable part of ageing or shrugged off as ‘just a bit of arthritis’. We don’t think that this is OK. Versus Arthritis is here to change that.”



Versus Arthritis provide information and support to those like me who live with arthritis and to medical professionals, they fund research into new treatments for arthritis, they lobby government on behalf of sufferers. Their ambition is “to ensure that one day, no one will have to live with the pain, fatigue and isolation that arthritis causes”. 
I want this too. 

It’s not just ‘a bit of arthritis’. Pain takes over your whole being, affects your every waking moment, (and disrupts your sleep too).

Please help me by donating to my fundraising for Versus Arthritis, on behalf of me, and all the 10 million other people in the UK that are affected by arthritis. 

I also want to share my story and give hope to others who are suffering with arthritis. To show that a diagnosis isn’t a life sentence. Once you get the right treatment, you can live as full and active life as you want to. 



Thank you so much for reading.



For anyone who donates £50 or over I will run a mile of the London Marathon in your name!