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.
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.
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.
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!
Osteoporosis isn’t normally linked with younger people. Most people tend to think it affects post-menopausal women, and to a lesser extent, older men. The reality is different – as I found out last week. Having had a ‘borderline osteoporosis’ diagnosis for the past few years, it came as a shock to hear that it’s now full-blown in my spine (but still ‘borderline’ in the hips).
‘Borderline osteoporosis’ had given me a false sense of security, the feeling that perhaps it was reversible and could be held at bay for a while. Instead, I face the prospect of another heavy-duty medication. On the positive side, I’ll only have to take Risedronate (Actonel) for 3 years to prevent the risk of bone fractures in later life (that’s if there are no side effects).
Last week, I had two ultrasounds on my left abdomen. The first was inconclusive but the second showed I had two old tears in the 10th rib. That explains the agonising pain since last September! It had been dismissed by several GPs on various occasions and I’d had to insist for further tests. It usually takes 6 weeks for this type of injury to heal, but my fractures are 6 months old. This doesn’t surprise me as Ehlers-Danlos Syndrome is associated with poor healing. The final set-back last week was being unable to have Enbrel due to a viral infection. I was gearing up to self-inject, only to be told by the specialist nurse that I’d have to wait. I never thought that I’d be looking forward to having an injection! Roll on next week and actually being able to do the whole injection in one go.
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.