RA, my journey

Winter 2010: Alexandra Dickens

Where or when my journey started is unclear. Being a woman of a certain age I simply dismissed my numerous aches and pains as the start of the menopause. My stiff knees, my swollen and aching feet, even my chubby and immobile fingers were, I thought, just part of getting older. Waiting to see a physiotherapist about my painful shoulder, I picked up a leaflet on arthritis. Arthritis was arthritis as far as I was concerned- I wasn’t even sure why I had picked up the leaflet except that the only other thing to read in the waiting room was a rather well-thumbed copy of the Readers Digest. Didn’t arthritis twist and knarl little old ladies hands until they were no longer able to knit? Towards the end of the leaflet there was a single line about rheumatoid arthritis being different. The joints in my hands had become alarmingly stiff especially in the morning and I was beginning to think that there might be something other than old age creeping up on me.

My life had been frenetic to say the least. As a fashion model I had strutted the catwalks of London and New York for many years. After that I had worked night and day managing several restaurants in London and Oxford. In 1995, after being diagnosed with ME, everything slowed down somewhat and I moved to St Ives in Cornwall. But, not being one to sit still for very long, I reignited my passion for painting and opened my own artist’s studio gallery. In 2007 I got married and, with my ME under control, and the gallery doing well, I had a great deal to look forward to. I loved my life and I just wanted more of the same.

When I got home from the physio, I entered Rheumatoid Arthritis into Google with some trepidation. Reading words such as chronic, disabling and incurable, all had me reaching for the phone to make an appointment with my GP. Then, in tears, I telephoned my husband and told him what I had discovered- adding that he should not look it up as it was too terrifying. The NRAS website told me exactly what I needed to know about a disease I hadn’t even heard of an hour before.

Neither my GP, nor the rheumatologist I saw very swiftly afterwards, told me that I had RA. They both asked me what I thought I had and then agreed with me, as if they would rather not enlighten me themselves. It seemed odd and I wondered if perhaps it was now NHS policy not to give out bad news but to leave the patient to work it out for themselves. After I had picked myself up from the floor, I went into overdrive to find out as much as I could about RA, the treatment and what the future might hold.
 
Although all the research suggests aggressive early treatment with combination therapy is the best way of halting this crippling disease, because I had no rheumatoid factor in my blood I was treated timidly with just a low dose of methotrexate. Five distressing and painful months later I had my first and only DAS score taken. It already bordered on severe. I was then given a succession of additional drugs - sulphasalzine, hydroxychloroquine and the occasional steroid injection. Each drug was given time to work and each drug failed to do anything other than make me feel utterly awful. At one stage I was even given a prescription for Pregabalin (an anti-depressant with suicidal tendencies as a side effect) by a doctor who told me it would sort out my ME, as if that in turn that would ease the symptoms of RA. But, while these doctors fiddled around trying different drugs and, it seemed, weighing up the cost of treating me properly, the life I loved so much was crumbling down around me. My hands and wrists had become so stiff and swollen I was no longer able to paint and I was so completely overwhelmed by fatigue that I wasn’t even able to work in the gallery. I couldn’t lift a mug of tea to my lips, cut up my own food or walk any distance without assistance. Just getting out of bed was a major undertaking and getting dressed was an agonising and slow process. I couldn’t even have a bath because I couldn’t bend my knees to get in or out and my elbows and shoulders were so painful I couldn’t lower myself down.

Being diagnosed with a progressively debilitating, not to mention incurable disease, was never going to be easy to cope with but what amazed me was how quickly I lost my sense of self-worth. As I became utterly consumed by the disease nothing else mattered any more. There were days when all I could do was lie in bed wishing I could curl up and die. My joints were excruciatingly painful and the nausea from the drugs was absolutely unbearable. I was taking pills to ease the side effects of other pills and injecting something that did nothing but make me feel so utterly dreadful it didn’t seem worth taking. The treatment was fast becoming as debilitating as the disease.

Finally, almost a year after diagnosis, I was offered Humira and the difference it made to my life was astonishing, but it still wasn’t halting the disease. I also tried Enbrel for a time but that too had no effect. Then RoActemra became available and even as my first infusion was drop by drop entering my system I could almost feel it working. I found myself twiddling my ankles and then my wrists as if they had been set free.

I am now able to paint again and it feels absolutely fantastic. My husband said “it’s good to have you back” and that is how I feel. I am back. I have regained the sense of self-worth that I lost when I was consumed by the illness. To be diagnosed with one debilitating and incurable disease was bad enough but two was just greedy.

Where this journey will lead me I don’t know but, thanks to some good people and great treatment, there is at last hope for the future and many more years of painting to come.