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.