‘The patient’: the section by the patient, for the professional. What are the patient’s wishes, experiences, fears, joys and prospects? This time the floor belongs to Hester van der Vegte, 53 years old. She was diagnosed with rheumatoid arthritis 20 years ago. According to her, it is important that rheumatologists approach the patient as an individual and listen carefully.
“My complaints started 20 years ago. My phalanges became swollen, joints were stuck, and I had pain in my shoulders and hands. What struck me most was the chronic fatigue. The doctor didn’t take it seriously. According to him it was certainly not rheumatism because I would be too young for that. I just had to take some paracetamol and ibuprofen. After 2 years I was fed up and wanted a blood test. The diagnosis soon followed: RA. When I received treatment at the Maartenskliniek in Nijmegen, they were not happy that I had been referred so late, I already had 10 inflamed joints. At the start of the treatment I was given methotrexate 10 mg once a week and painkillers such as naproxen, ibuprofen and paracetamol and prednisone was temporarily prescribed. I often also received corticosteroid injections for inflammation in my joints. After increasing the methotrexate to 25 mg, there was still no improvement. After 2 years I switched to intravenous infliximab and it worked immediately.
Day treatment
I found it difficult to accept my condition and also couldn’t control the pain. I went into day care. The conversations with a psychologist and the physio, occupational and relaxation therapies have helped me to cope better with the disease. Because infliximab no longer worked, another drug had to be found. First, adalimumab was tried. That didn’t help enough, I kept inflammation. Then I switched to etanercept, but I turned out to be hypersensitive to it. At the suggestion of a doctor, I participated in a follow-up study of the then new drug abatacept. I responded well to it and have been using it for 9 years now. Also important is my contact with the rheumatologist. RA does not progress in the same way for everyone, so it is important that a doctor learns to look at patients individually and to listen carefully. I have experienced the importance of this myself. My knees were already worn out at a young age, but my rheumatologist hadn’t estimated it that way yet. I asked if she wanted to take more pictures and it turned out that my knees were in the end stage of osteoarthritis. I had surgery on my knees in December 2015 and May 2016 and sometimes think that I would have had less pain if I had looked at it earlier. Not working according to the manual, but approaching the patient more as an individual is, I think, essential for good treatment.
Indicate boundaries
I see the future mainly positive. My work as a self-employed person in childcare has ended, but as a volunteer in care I can still make myself useful. I can’t do heavy work, so I did set some conditions before I started. That is the big difference between paid work and voluntary work; you can set your boundaries. But plenty of fun challenges remain. I do have a brace against crooked growth for my hands, but I don’t wear it because it restricts me too much in my work. I am realistic. The RA is now stable, but that could change. The time will come when I have to slow down. But I remain optimistic. For the somewhat longer term, there are plans for emigration to a country with a Mediterranean climate. Gran Canaria is very suitable for someone with my complaints; the climate is stable and the humidity is ideal.”