What a month! Number of medical appointments: 13, not including blood tests. Seeing specialists covering osteoporosis, rheumatology, dentistry, urology, podiatry, chest physiotherapy. Not forgetting fracture clinic and the GP. No wonder some people have asked if I work at the hospital! Now I have another specialist to add to the mix: the haematologist. It turns out that my neutrophils (a type of white blood cell) are consistently lower than they should be. I’m trying not to think about it too much but it is a bit worrying. This may well be linked to taking a biologic drug (Enbrel) for rheumatoid arthritis, as when I’ve had to come off this medication (e.g. during a chest infection) my neutrophil level has gone back up. It’s a matter of waiting and seeing at the moment. Sometimes it feels like I’m on a continuous loop of investigations and tests. It would be good to step off that conveyer belt for one week!
On a positive note, a recent MRI showed that the fracture in my right foot is healing gradually. After two months in an aircast boot and on crutches, I’m getting around a bit more easily. As I said before, it’s amazing how talkative people are when you’re wearing an aircast boot. It does look rather dramatic – as if I’ve broken my leg rather than one bone. Every day people regale me with their story of breaking a bone or without asking how I sustained the injury. Most of the time I don’t mind – but sometimes it can be exhausting – so then I just smile and say ‘long story’. In the early days, around three people a day thought I’d been skiing! The healing process does take longer – thanks to osteoporosis and Ehlers-Danlos syndrome. I can’t wait for the boot to be off in a few weeks’ time and celebrating afterwards!
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.
Over the past few weeks, I’ve had to stop my Enbrel injections twice. One week it was because I felt really ill with a sore throat and feverish symptoms, spending most of the time in bed. After a week without Enbrel, my joints stiffened up considerably, my fingers became puffy, and I needed help getting out of the bath and out of a chair. This rapid deterioration was the reason I put myself back on the medication. Enbrel had been making a difference to my quality of life. Then I had a blood test which showed low neutrophils and the hospital asked me to stop injecting. After this, I had a ‘flare-up’ with my lungs – directly linked to my bronchiectasis. So I’m on antibiotics for up to 2 weeks but cannot take Enbrel.
Pausing Enbrel worries me as I’ve heard stories of people coming off it for various reasons, then trying it again without success. I really hope it works again, as I’m running out of options to treat the rheumatoid disease/arthritis. On the positive side, this enforced break should give my neutrophils a chance to go back up to normal levels. And continuing to inject Enbrel while having a lung exacerbation wasn’t an option, as it would be counter-productive (i.e. take even longer to get better).
Apart from these set-backs with my health, I’ve managed to see a few friends and to visit a few art exhibitions to keep my spirits up. I never thought I would be craving such a powerful biologic as Enbrel when it took me a long time to even contemplate taking it. I’ve had a glimpse of how it can be life-changing (not dramatically in my case, but enough to start making a difference to my joints and fatigue). Hopefully, when I restart the drug, it will be just as effective as before.
I had an MRI recently on my hips. There was a choice of either the knees or the hips, as I’d complained about pain in both areas to my rheumatologist. I chose the hips, because they’d been painful for longer. Results showed that the cartilage in the hip sockets is ‘frayed’. This explains the agonising pain I’ve been experiencing for the past few months. It turns out that my hip joints go into the sockets at a different angle than other people. Why? Because of Ehlers-Danlos Syndrome, a genetic connective tissue disorder. My worst fear had been that the pain was due to rheumatoid disease/arthritis, so I should be relieved. The news came as a real surprise. It seems that erosive joint damage caused by RD only affects my hands and wrists at the moment, which is not what I’d expected at all. However, it does confirm that Ehlers-Danlos Syndrome is arguably just as serious for me as rheumatoid disease.
How can I prevent my hips deteriorating? Physiotherapy is the suggested way forward, as surgery is always the last resort where EDS is concerned. Poor healing skin and excessive bleeding are two reasons why I’m reluctant to choose surgery. Another reason is previous operations on my feet have not been entirely successful. Perhaps all the training I did for the fundraising ‘Superhero 5km walk’ several months ago contributed to this problem. On the other hand, it could have happened anyway. At least I know what it is and what to do about it which is all that matters.
“Which arm would you like the needle in?”, the radiographer asked me before putting in a cannula. “Whichever has the best vein for it”, I replied. I had an MRI on my hips this morning and it involved having a contrast dye (gladiolinium) to show what is going on with my hips in greater detail. How is rheumatoid disease affecting my hips? As I was complaining of so much pain in my hips and knees, my rheumatologist had ordered an MRI but gave me the choice of having my knees or hips done. I chose the hips because they have been painful for longer than the knees and feel like honeycomb.
Having had MRIs performed before, I knew what to expect. Once I had the needle in my arm (for the contrast dye which was administered near the end of the scan), I lay down on my back with a heavy ‘tray’ laid across my pelvic area. Ear plugs and headphones blocked out the noise from the machine. At first I felt a bit panicky and claustrophobic in the tunnel-like machine. Steeling myself for the next hour, I decided to focus on the classical music I’d opted to listen to (you could choose from a ‘menu’ of artists including Adele, Jamie Cullum and Eminem, amongst others!). Although it was quite hard to hear the soothing music above the persistent loud ‘knocking’ sound of the machine, it helped to relax me.
The first half hour passed quicker than I’d anticipated, partly because I was so tired that I almost fell asleep. The radiographer’s voice came over the microphone: “You’re doing really well. We’re half-way through.” During the second half, I started to get uncomfortable and hot with the heaviness of the ‘tray’ weighing on my lower body but kept my eyes firmly shut. I told myself it would be over soon. With about 8 minutes of the scan remaining, the radiographer came in (they were sitting in a separate room behind a glass partition) to administer the contrast dye through the cannula. Then before I knew it, it was over. I could get up, have the cannula removed and change out of the gown. What a huge relief. I’ve no idea when I’ll have the results back, just happy to have got through this.