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.
I recently got back from a week in Italy. Nothing unusual about that, except this was my first week abroad for three years and the first time I’d travelled with medication that needs to be kept between 2˚C and 8˚C. Going by train seemed an easier option than by plane. Although I carried a letter explaining that Enbrel shouldn’t go through the x-ray scanner, my medical case still had to be scanned separately with a special hand-held gadget. Keeping Enbrel cool didn’t worry me too much as it was packed securely with a special freezer pack and spacer so the syringes didn’t touch the pack directly. Following a rather long train journey to Paris and then through France and north Italy to Milan, we checked in to a hotel. The staff were fabulous and offered to put the freezer pack in their freezer and the Enbrel syringes in their fridge, as the room fridges weren’t cool enough. The next day we took another train to Como, then hired a car, which my sister drove up to a village on the west side of Lake Como. I’d repacked the Enbrel and as soon as we got to the villa I put it in the fridge. The only slightly stressful thing was that the fridge didn’t have a stable temperature so we kept having to adjust it. Luckily we’d brought two fridge thermometers so we used those to check and modify the temperature on a daily basis to keep it within the 2˚C and 8˚C range. At the end of the trip, I handed in my travel sharps bin to a pharmacy at Milan station. Not much point in bringing it back to the UK when it could be incinerated there!
Although the logistics of carrying and storing Enbrel across Europe were a bit difficult, having done it once I know I can do it again. Importantly, it will be easier next time. Going on holiday while continuing treatment is possible, rather than missing a couple of weeks’ Enbrel to the detriment of my joints and overall health. Best of all, once I’d injected each time, I was able to get on with going on scenic boat rides, relaxing by the stunning lake, and eating delicious ice-cream in flavours like fig, peach and hazelnut. Most of the time I wasn’t thinking about rheumatoid disease or other health problems because I was so busy enjoying the beautiful scenery of Lake Como.
It’s Invisible Illness Awareness Week 2014 from 8-14 September. This time last year, I wrote about keeping positive. Lots has changed in a year. Anti-TNF treatment (Enbrel) has started to make a difference to my joints by stabilising my existing bone erosions and reducing swelling, stiffness and pain in my joints. But the rollercoaster nature of rheumatoid disease / arthritis means that missing most of my injections over the past month due to illness and antibiotics has reversed this progress. Once again, I’m having a nasty flare, with incredibly swollen and painful wrists. I can’t wait to restart the drug later this week and hopefully see those positive results again. I’m staying positive as much as possible but it is harder to maintain an optimistic outlook when even simple tasks like getting out of bed or the bath are a struggle. Getting back on the medication should improve my quality of life again.
The need for Invisible Illness Awareness Week remains as important as ever. Just yesterday, in a shop, I asked a member of staff about the ‘accessible’ facilities. She said casually, not even noticing my hand splints, ‘Oh, those are for disabled people’. I replied ‘I am disabled, I have rheumatoid arthritis and Ehlers-Danlos Syndrome’. She looked down at my hands, and didn’t seem either apologetic or embarrassed but reluctantly proceeded to show me to a room away from the main shop floor, only reachable by staff with a security pass. What upset me was that she had such a narrow view of disability that she hadn’t stopped to think why I was specifically asking for the ‘accessible’ facilities. Wearing splints sometimes makes people more sympathetic, but mostly elicits stares, although she didn’t even notice! Plus I shouldn’t even have to wear an obvious aid such as splints to make my invisible illnesses visible. What people with invisible illness need is greater awareness and understanding so that when we ask for specific help to make life easier, it is available and offered instinctively, no questions asked.
Ordering fruit juice at a bar always elicits curiosity. If I’m with a new group of people, one of their first questions is: ‘What are you drinking?’. There’s often an assumption that everyone drinks alcohol. If you’re not drinking, people want to know why. Friends know I don’t drink as it doesn’t mix well with my medication (Enbrel injections for rheumatoid disease and Actonel tablets for osteoporosis). But should I tell people I haven’t known long the reason why I’m alcohol-free? It shouldn’t be an issue. Lots of people (without chronic illness) abstain from drink for health reasons or because they’re into sport. Others might have addictive personalities and stay off booze. That’s their decision. I don’t judge others for drinking alcohol or not but I’ve noticed that some drinkers (not my friends) find it hard to have a ‘teetotaller’ in their presence. They crack jokes about ‘Needing to watch their intake’ and so on. I’ve explained that I don’t miss it and if I want a great substitute, I know an amazing alcohol-free wine that tastes and looks like the real thing.
Taking my reason for staying sober out of the equation, I feel much better without it. RA/RD and Ehlers-Danlos Syndrome make me feel tired enough already without adding hangovers into the mix! Being teetotal doesn’t mean you have to stop socialising. However, not drinking means more time to explore other activities that don’t revolve around a pub!
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!
My rheumatologist did an ultrasound scan on my hands and wrists today. I was really worried about this procedure, as it’s been a whole year since the last scan and it feels (physically, at least) as if my body has gone downhill because of rheumatoid disease. Unexpectedly, inflammation levels have decreased markedly and the bone erosions seem to have stabilised. She’s going to prepare a detailed report but objectively, from what flashed up on the monitor, there has been an improvement in my joints.
So why did I get teary when I saw this? Because the results on the screen don’t match how I feel. Don’t get me wrong, I’m over the moon that Enbrel seems to have slowed down the disease. It’s just that it doesn’t make sense that the results show an improvement on last year, and yet I feel worse. My shoulders, elbows, knees and hips all ache continuously whereas last year it was confined to my knees and hips. Energy levels are still zero and my limbs feel heavy, almost as if they’re being held down by weights when I try to get up or move around. An added complication is that I already had Ehlers-Danlos Syndrome (Hypermobility) when I was diagnosed with RD/RA four years ago. My rheumatologist said that it looked like EDS could be affecting me more than RD/RA at the moment. I’m not totally convinced but nowadays it is virtually impossible for me to separate EDS symptoms from those of RD/RA.
The next step is an MRI on my hips which will give a fuller picture. I’m going to continue with the Enbrel (twice weekly injections), Vitamin D (1,000 International Units daily) and Risedronate Sodium/Actonel for osteoporosis (once weekly) for now, and will have another ultrasound scan in 6 months’ time. I’m feeling cautiously optimistic about the future. I recognise that I’m impatient to reach drug-induced remission. I need to be realistic and acknowledge that managing my RD/RA effectively may be the best I’ll get, but that won’t stop me being optimistic about getting to remission. I’m happy that I seem to be getting better and would like the chronic pain, fatigue and brain fog to lift magically. That’s what I thought would happen with the Enbrel, as I know it has with other people. Having said that, comparing myself to myself (rather than others) is essential, because RD/RA affects individuals so differently. Enbrel is making a difference slowly, so it’s time to celebrate this good news and keep moving forward.
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.