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.