Enbrel is definitely working. I can’t believe it. My rheumatologist performed another ultrasound on my hands two days ago and said it was the best so far. The rheumatoid arthritis was the least active she had ever seen it. Inflammation and synovitis in my hands have reduced and the erosions have not worsened. Last time she saw me, she asked me to consider Rituximab because the RA was so active, but I insisted on continuing with Enbrel. Although I started on Enbrel in January 2014, treatment has been interrupted by regular chest infections and low neutrophils, which both led to short intervals without the drug.
When I’ve had to come off Enbrel for just one or two weeks I really notice the difference. My joints stiffen up, I need a hand getting out of a chair or the bath, and my fatigue is all-encompassing. Not being on treatment makes me feel low and every simple task (e.g. opening jars) becomes harder.
Even though the scans show my RA is less active while taking Enbrel, I still have stiff and swollen fingers, extreme fatigue and painful joints. Some of these symptoms (fatigue and painful joints) overlap with Ehlers-Danlos Syndrome, so it is hard to know how much is RA and how much is EDS. Another reason I have pain in my hands and shoulders is from using crutches while I have a fractured foot (probably caused by my osteoporosis). We agreed that I need to stay on Enbrel for as much as possible to give it a chance to have maximum effect (i.e. only take antibiotics and stop taking it when the bronchiectasis is at its worst). The good news is remission feels within reach, more than ever before.
Nearly a year ago I found out I have bone erosions in my hands associated with rheumatoid arthritis. I’m having another ultrasound scan in 4 days’ time to evaluate the current state of the disease. (Although I’m not a fan of the word disease, it conveys the seriousness of RA and its chronic, systemic nature). The thought of further bone damage terrifies me. On the other hand, it could be good news. Since June 2013, I’ve tried five different drugs to treat RA (and osteoporosis). Currently, I am on Enbrel injections (twice-weekly), Actonel (once weekly) and Vitamin D (once a day).
What I’m hoping for is confirmation that my bone erosions have stabilised (i.e. not progressed). I know that once bone damage has been sustained, it can’t be repaired, but you can prevent further damage happening if the drugs work. If it turns out I have more bone erosions in my hands than last year it will be distressing. I’m trying to stay positive until I know the results. Once I’m informed, my rheumatologist and I can jointly decide on an action plan to do something about it.
Rheumatoid disease is more descriptive than rheumatoid arthritis. These words capture its systemic nature and that it can affect organs such the heart, lungs and eyes. RA, by contrast, is too easily confused with osteo arthritis. Lots of people, upon hearing I have arthritis, say, ‘Oh, I have a bit of that in my knees’, or ‘My mum has that’. Questioning them further, it turns out that they have osteo arthritis. When they find out what RA/RD really involves, people often look surprised. Many people don’t know the symptoms and the reality of what it’s like living with RA/RD. I’m pleased that the National Rheumatoid Arthritis Society’s RA Awareness Week 2014 (16th-22nd June) has ‘invisible disease’ as the focus, as its hidden nature is a huge part of the problem when it comes to public perception.
Until recognition improves, I’m going to continue using both rheumatoid arthritis and rheumatoid disease in conversation. Media coverage of RA/RD should focus on the fact that drug remission is possible, although it may take years, and that lots of people can successfully manage their condition with the right treatment and support network (from friends, families and health professionals). Having said that, it’s also important that health professionals tell RA/RD patients about potential side effects from medication but this shouldn’t be done in a ‘doom and gloom’ way which makes people too scared to take the drugs. The key message is that the benefits of taking the medication outweigh the risks. I had no idea what would happen to my joints if I continued without drugs (I had a 7 month hiatus from them), because no one had ever properly explained what could happen and I didn’t know I had erosive RA. That all changed when my GP said ‘Your joints will crumble if you continue this diet-only approach’. I also think that talking to others going through it is invaluable, whether in person or online. Sharing stories and encouragement has really helped me and I’m sure it’s helped others too. In an ideal world, there would be no need for an RA/RD Awareness Week, as everyone would know what it is, how its treated, and that remission is a distinct possibility.
A few months ago, self-injecting Enbrel was the last thing on my mind. The idea horrified me. I can’t even watch while the Phlebotomist takes my blood, so being able to inject myself with etanercept seemed a distant possibility. Fast forward to March 2014, and the situation has changed. Now I see it (learning to self-inject) as an exciting thing as it will give me more independence. This change in attitude didn’t happen overnight. I started to get fed up with the amount of time that I’m spending in hospital (varying between four and seven times a week at the moment – and two of those appointments were related to my Enbrel injections). Rather like learning the ukulele (!), I think of self-injecting as a skill that has to be broken down into manageable chunks rather than trying to do it all at once.
Some people are able to inject themselves straightaway – good for them. But it’s unhelpful to compare yourself to other people. In my case, with a history of PTSD and health anxiety following an allergic reaction to the first rheumatoid arthritis drug I tried, followed by side effects from the next four medications (including Enbrel), it hasn’t been an easy process. For ages, I hadn’t even contemplated self-injecting. It was enough of an achievement to get to the clinic and have the injection. Having said that, just in the past two weeks I have learnt how to a) remove the grey syringe lid (no mean feat when you can’t grip properly), b) gently push out the air bubble and c) plunge the needle in at a 45 degree angle to my upper thigh (while pinching the skin). My specialist nurse had to push the plunger to administer the drug. However, I felt a real sense of achievement from getting this far. Next time, I hope to be able to do the full procedure. I didn’t do a, b and c all in one go – but learnt a new skill at each appointment. My fears have subsided. It wasn’t as painful or as hard as I anticipated. I thought it would be a nightmare watching myself do it (as you can’t look away) – but it wasn’t. Hopefully I’ll soon feel able to self-inject without the nurse present. This is exciting. More opportunities lie ahead (such as working and travelling again) and I can’t wait.
“Don’t you get bored?”, asked a taxi driver recently. He couldn’t see that having multiple hospital appointments every week, combined with aggressive rheumatoid arthritis that isn’t yet stable, makes working difficult. These days it’s four times a week, but at the most it’s been about seven visits every week. Once I feel confident enough to self-inject, that should change. I can’t wait to get back to work but need to a) get the RA stable first and b) work out exactly what type of job I’d do, as working four days a week may be more realistic than full-time.
After six Etanercept (Enbrel) injections, there hasn’t been a dramatic improvement in my joint pain or swelling. Perhaps I wasn’t helping the situation by enthusiastically playing the ukulele every day, including during a 2 hour class on Monday!! When my specialist nurse pointed out that my right wrist (the one I use for strumming) was looking more swollen than the left one, when it is normally the other way round, I realised it’s time to ease off the practice a little bit. Playing California Dreamin’ will have to wait a few days. And this way we’ll actually know if the drug is having any effect.
Away from the hospital and ukulele nights, I’ve been catching up with more friends who I haven’t seen for ages. It’s great to spend time with people who knew me before my life was dominated by chronic illness. We talked about anything and everything but crucially, not RA or Ehlers-Danlos Syndrome. I showed one of my friends round the Royal Academy’s ‘Sensing Spaces’ exhibition, a show that’s apparently about architecture. In reality, it gives adults and children alike a chance to climb up an incredible wooden ‘building’, and to marvel at scented wooden structures undulating from the ground like strands of hair emerging from follicles. At one point, we laid down inside a white honeycomb cocoon festooned with coloured straws, before adding our own straw creations! It was interesting to watch other people being creative too, using straws to write their names or designing a giant Catherine wheel firework shape. Best of all, it really got me thinking about how different environments influence my mood. A perfect reminder of why more time spent in art galleries and museums and less in hospitals is a good idea.
For my second Enbrel injection, I spent a night in hospital so doctors could observe how I reacted to the drug. As expected, I was the youngest on my ward by 30 years, with the oldest patient being 56 years older than me. I arrived at 9am last Thursday and left at midday the following day. My specialist nurse arrived to administer the injection around 2pm and then it was a question of waiting to see if anything happened. A student doctor turned up and wanted to chat about my experiences of rheumatoid arthritis and Ehlers Danlos Syndrome. He was especially interested in the reactions and side effects that I’ve had from other drugs, and asked permission to write an essay about my case. I said it was fine. It was impressive that he asked intelligent questions and showed a real interest in what it’s actually like to live with chronic illness. It got me thinking of some doctors who could actually learn a lesson or two from this student.
The next morning, still in bed on the ward, a consultant (accompanied by a handful of student doctors) turned up and insisted that I could go home, seeing that I didn’t have a significant reaction to the Enbrel (at that point). I spent some time saying goodbye to the women in the beds next to me. They were all very friendly and we had got on well, thrown together due to our shared (but different) medical problems. I was touched that P (the 92 year old lady lying in the bed opposite me) and one of her visitors offered me some yellow tulips, seeing that the hospital wouldn’t allow them for ‘health and safety reasons’, which seems ridiculous to me. I scrabbled around for a suitable gift in return and plumped for a crossword book I’d only bought the day before but hadn’t had the chance to use. Then, another of her friends helped take my bags downstairs and got me a cup of peppermint tea. A kind gesture that meant a lot. When you’re struggling with your health, the smallest things that other people do for you make the biggest difference.
Two and a half hours after leaving the hospital, I was back in A & E with burning lips and small blisters forming on the inside of my lips, as well as a hot sensation in my throat. I had phoned my specialist nurse who urged me to come back. I was pretty distraught and had to drag myself there. The rheumatology registrar knew I was coming so I didn’t have to wait too long. I took an anti-histamine (but no steroids this time) and had observations taken at regular intervals for the next hour or so (blood pressure, heart rate, oxygen saturation levels). Several hours later I was free to leave as they said I was experiencing side effects rather than a serious reaction. I was relieved but not entirely reassured, as who knows what will happen after the third injection?
I finished the day with friends at Tate Britain’s late night, which provided a welcome contrast to the past two days in hospital. Dancing digital images in an ‘1840s gif party’ competed for attention with sculpture, DJs, live storytelling and film screenings. A perfect distraction and there was no mention of health or hospitals all evening.
Last night, more than 300 people danced the night away at a Burns Night Ceilidh (celebrating the life of Scottish poet Robert Burns). I didn’t realise before going that it was a fundraising event for Arthritis Care. The dances were energetic, and the live band’s music (the fantastic Timorous Beasties) got so fast it was hard (but fun) to keep up! I actually fell over at one point as I was spun round so fast but got up again, laughing. We were having such a great time that I didn’t even feel pain in my hips and knees until I sat down. There was no way that I could have danced the whole time so I skipped a few dances but it was good to muster the energy to dance for so many of the classic Scottish country dances, like ‘Dashing White Sergeant’. ‘Strip the Willow’ was hilarious as my dancing partner started dancing with someone else by mistake! Another one of our group swapped round so I had a partner to dance with again. All in all, it was an exhausting but thoroughly entertaining night, and I certainly plan to go to another Ceilidh soon, rather than wait ’til next January.
The Burns Night Ceilidh also distracted me from the fact that I’m starting drug number 5, an anti-TNF treatment called Enbrel, in about 10 hours’ time. I’m feeling nervous but have the anti-histamine and steroids on stand-by just in case I have another reaction, as I did with the previous four drugs. Fingers crossed it won’t come to that. I’ve heard some great things about Enbrel and it sounds too good to be true. However, I’m optimistic that at the least, it’ll improve my symptoms, and at best, it’ll lead to drug-induced remission.