Superhero Walk

Regent’s Park yesterday was filled with over a thousand people running and walking 5km to fundraise for loads of different charities. I took part to raise money for Arthritis Research UK. Quite simply, without clinical research, I wouldn’t be on a biologic drug (Enbrel) that is starting to make a difference to my joints. From the start I knew that I’d walk, rather than run, the five kilometres. It was a baking hot day (25 degrees Celsius) but more importantly, my body isn’t up to running as I’m not in remission (yet).

Everyone taking part was entitled to a free Superhero costume such as Superman or Wonderwoman. You could either turn up and collect a costume on the day or make your own. I dressed as an old-fashioned Superhero – namely a Suffragette, complete with a white, green and purple sash, a hat adorned with ribbon, and a double-sided placard proclaiming ‘Votes for Women’ on one side and ‘Arthritis Research UK’ on the other.

As I’ve been doing regular training walks for the past three months (and the Enbrel is kicking in now), I managed the route in about 45 minutes. I deliberately walked quickly (despite having very painful hips and knees), partly due to the heat, but also because I wanted to complete the course in less than an hour. Along the route, I chatted to several typical ‘Superheroes’ who recognised my outfit. One excitable 10 year old boy shouted out, ‘You’re a Suffragette!’ Don’t get run over by a carriage’, which made me smile. Lots of people beamed in my direction and wanted photos, but there was nothing unusual about that as lots of us had snaps taken. Even though it was an exhausting walk and tough on my hips and knees it was an exhilarating feeling to cross the finish line. Apart from fundraising for Arthritis Research UK and raising awareness of rheumatoid arthritis/disease, the walk was about setting a challenge for myself and achieving it. Now it’s time to think of a new challenge!

Advertisements

Self-injecting success

Featured

Not long ago, self-injecting Enbrel was out of the question. I was traumatised by previous bad experiences on four other drugs, including hallucinations and broncho-spasms. 18 months after that night, I finally self-injected today! I’ve been building up to this for some time, as this was the 12th dose, and I started the medication at the end of January. To begin with, my specialist nurse administered the drug. Then, over several weeks, I learnt to remove the grey lid (a tricky manoeuvre with swollen fingers!), push out the air bubble, and inject my thigh at a 45 degree angle. Today was the first time that I’d managed to do the whole procedure – even pushing the plunger and removing the syringe. It wasn’t as bad as I thought it would be! It stung a bit, but not massively. I’ve celebrated by having a bar of chocolate (as I don’t drink anymore since being on anti-TNF drugs). I feel an amazing sense of achievement as well as relief. I’ll probably self-inject in front of the nurse for a bit longer before I do it at home. This feels like a real milestone and I look forward to it getting easier with practice.

I’ve also signed up for the Super Hero 5km Run on Sunday 18th Mary at Regent’s Park London (except in my case it will be a walk, raising funds for Arthritis Research UK. Why AR UK? Because they do vital work to find new treatments to tackle rheumatoid (and osteo) arthritis. Without their research, I wouldn’t be on a biologic drug (Enbrel) that will (hopefully) a) give me a better quality of life, with less fatigue, joint stiffness and swelling and b) lead to drug-induced remission. Without them, I wouldn’t have access to valuable information about RA (both the condition and full range of treatments available), helping to demystify everything.

Why the Super Hero Run? (or as I’ll do, walk). I originally wanted to do the Santa 5km Run/Walk in December, but didn’t go ahead for various reasons (the cold, dark weather combined with a flare). Having (temporarily) given up the ukulele, I was looking for a new challenge. I realise that in some ways it’s not a great idea to subject my joints to this kind of physical endurance test but I wanted to give something back. I couldn’t have asked for a better rheumatology nurse and consultant and would be lost without them. Apart from raising money for arthritis research, I’d like to highlight that people of all ages have RA. And wearing the Super Hero costume should bring an element of fun to the whole event. I’ve invested in a pedometer that tells me the distance I’ve walked each day. So far today (bearing in mind it’s only 15.20pm) I’ve only walked 3600 steps or 0.57 miles. That’s a long way from the target. Still, there are 8 and a half weeks to go so plenty of time to reach 5km in one day. If I seem relaxed about this, it’s because it’s not a competition, it’s about seeing what I can achieve, despite having erosive RA that isn’t under control yet. No matter how long it takes, I’m determined to reach that finish line!

National Arthritis Week

This Arthritis Week (7-13 October 2013), Arthritis Research UK is encouraging people to make a ‘Joint Effort’ to raise awareness about arthritis. I’ve been doing that in my own way by talking to people about what it’s like to live with rheumatoid arthritis. Yesterday, on the tube, I got talking to a woman in the seat next to me (about 30 years older) who had osteoarthritis. During our chat, she showed me her hands and wrists, pointing out where she’d had an operation on her wrist and which fingers were particularly affected. I showed her the little finger that I fractured through typing which was clicked back into place while in Paris on Easter Sunday 2012; the effusion on my left wrist; and the accumulation of synovial fluid above my wrist joints, making them appear even more swollen. We agreed that one of the hardest things about having arthritis (whether RA or OA) is that it can be an invisible illness and people don’t always realise.

Then today, at the hair salon, I mentioned it (having arthritis) to the hairdresser. She asked lots of questions – how did I get it? how was it treated? would it just go away with diet? Her last question is a myth that I’m constantly having to bust. So many people think that it will just improve by changing diet, or with exercise, or that all I need to do is pack my bags and go to live in Australia! If it was that simple then no-one in Australia would have it! I’m not angry, just frustrated at people’s lack of knowledge around such a common disease. Although I dislike the word ‘disease’,’illness’ makes it sound less serious, like flu, and doesn’t seem to capture the severity of it. Having said that, I also use the word ‘condition’ so maybe it depends who I’m talking to and how positive I feel about the situation. Ideally, just saying ‘rheumatoid arthritis’ would prompt a ‘yes, I know, that must be tough’ reaction rather than questions about sun and diet. Hopefully things will change, and awareness weeks are a big part of that. One brilliant way to get RA into the public consciousness would be through a soap character, showing their journey (TV word but the best one in this context) from diagnosis to treatment, with readjustment to daily life and managing friendships and relationships all part of the mix. Showing the character experiencing drug-indued remission on screen would also be amazing. Until that happens I’m going to keep talking about RA whenever there’s a chance (in a ‘did you know?’ way rather than a ‘you should know this’ way) but not let it dominate my life. It’s a tricky balance to strike, and at the moment the RA side is beating the enjoyment of life side. With luck, once I start Humira, the balance will be firmly back in favour of ‘having fun’.

Preparing for anti-TNF treatment

It’s been a whirlwind month. Not in a ‘how exciting!’ way, but in a ‘rollercoaster that you’re not particularly enjoying and want to get off now’ way. Several attempts at taking Sulfasalazine / Sulphasalazine led to:

1) Rash on my chest & tightening in throat, ending up in A & E with intravenous anti-histamine via a drip and an adrenaline injection, plus an overnight stay;

2) Second attempt: white blood cell count was too low so stopped & restarted once bloods were back to normal;

3) Third attempt: developed a mouth ulcer, it affected my liver & the white blood cell count dropped again.

I’ve been told to stop taking it and had a chat with the specialist rheumatology nurse today about alternative treatments. Having ‘failed’ (i.e. didn’t tolerate or respond well to) three DMARDs (Disease Modifying Anti-Rheumatic Drugs), the next step is either one final DMARD, specifically Leflunomide, or an anti-TNF (anti-Tumour Necrosis Factor) drug – probably Humira or Enbrel.

The nurse ran through what taking the different treatments would involve and the potential side-effects, as well as handing me lots of print-outs about the drugs. I’m reluctant to try Leflunomide as if I want to have a baby I would have to wait 2 years between stopping it and becoming pregnant.

Humira and Enbrel are both anti-TNF drugs, a totally different type of drug to the DMARDs I’ve already tried. According to Arthritis Research UK: ‘In people with rheumatoid arthritis and some other inflammatory diseases a protein called TNF is overproduced in the body, causing inflammation and damage to bones, cartilage and tissue. Anti-TNF drugs block the action of TNF and so reduce the inflammation.’

I felt quite depressed today realising that I have no option but to try yet more new drugs. Yet the alternative would be worse: given that I have bone erosions, without treatment my bones would be destroyed and I’d need joint replacements. New treatment is infinitely preferable to joint replacement but the potential side-effects do make it scary.

I have a week to think about treatment options and will see my consultant next Friday. It’s not a decision to take lightly and I need to be well-informed first. Hearing from my specialist nurse about people who have achieved drug-induced remission spurs me on to try another new treatment. The uncertainty about getting better is hard (so many ‘What ifs’ spring to mind) but with the support of the rheumatology team, my family and friends, I’m determined to reach drug-induced remission and to stay there.