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.
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.
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.
After my first Enbrel injection today, I waited for a while in the clinic with a sense of dread, worrying if I would have a reaction. Half an hour later, I left, feeling a bit nauseous and tired but otherwise ok. Later on in the morning I developed a slight rash on my face and chest as well as a sore throat, but this was manageable. Then I had yet another blood test (my last one was three days ago). In the afternoon I heard from the specialist nurse that my neutrophils were low. So I have to miss the next dose, repeat the bloods, and perhaps see a haematologist to find out what’s going on with my blood results. Now I’m up at 2.30am in the morning with chest pain, a racing heart and anxiety about what the future holds. One of the hardest things to deal with when managing chronic illness is the uncertainty: over treatment, over test results, over the prognosis. Having an aggressive disease that is not yet controlled is scary and even more so when the treatment is complicating things, not improving them. Hopefully I will be able to continue on Enbrel if my neutrophils go back up to normal(ish) levels.
I’m approaching this by focusing on what can be done now, rather than in the future. It’s very easy to get carried away thinking ‘What if this happened?’, ‘Maybe this drug won’t work either’. This evening I went out and socialised, despite feeling exhausted, because I knew it would boost my mood and distract me from all of today’s events. And it worked. Taking this ‘living in the moment’ further, I’d like to do a mindfulness meditation course soon to get a fresh perspective on what I need to do to create change in my life and to assess how to reach my goals. Living with a disability (or several) shouldn’t stop you from aiming high and succeeding in whatever you choose. And if it doesn’t work the first time, there’s always another opportunity.
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.