40 Year Veteran of RA, But Age is Not My Friend
I was first diagnosed with RA in 1982 after a "spontaneous effusion" of my right knee. I was 17. It took nearly 2 years and being part of a trial for oral gold before my rheumatologist drained my knee, gave me a massive cortisone injection, and I got relief.
My RA history
Over the past 40 years, my RA has flared and settled, flared and settled. I've had my right knee replaced, tried stem cell therapy - my own injected - and once had an arthroscopy that resulted in a year of chronic pain. It's been a journey, sometimes of denial, often painful, but always hopeful.
Over Covid, my RA has flared up badly. It prompted me to seek a rheumatologist after having been managed by my GP for 14 years. I've been through the mill with all the DMARDs. Methotrexate and Arava both "worked", but the first had my white cell numbers dangerously low, and the latter caused many strange side effects, including my BP going up and down drastically with body temperature.
Searching for the right RA treatment
In Australia, you need to try most things before you're allowed to take a biologic under the PBS. By the time I got to try Humira I'd heard a lot about how good biologics were and how it would be life-changing. 5 fortnightly doses into taking Humira and it has certainly been life-changing. My pain is very much worse, and joints that had only been mildly involved before are now very bad. I told my rheumatologist this. but I've been asked to persevere with it, as the trial needs to go for 3 months to comply with the PBS process.
I now have a disability parking permit, as leaving the house and going any distance is hard work. It took me a day to recover from a short visit to the supermarket last week. Walking with a stick I can stand up straight, but holding the stick in a sore hand and taking weight through it, I end up with pain in my hand,shoulder, and a stabbing pain to the right of my lower back. Not to mention the farcical and painful spectacle of getting in and out of the car.
Pain, fatigue, and frustration
I'm a knitter, a musician, and crafter. I can still do those things to a degree, but at a price. A day with knitting is a night with extra painful shoulders, elbows and hands. 20 minutes at the piano gives me a sore back and hands, and ligaments that fail. Every exertion requires a rest. My days are short, as I'm often in bed by 8:00 with exhaustion, even with naps through the day. Nights aren't that restful as every position has points that hurt.
I'm having trouble staying hopeful. Humira has been a terrible disappointment, and RA doesn't react well to disappointment. I know how lucky I am to have survived 40 years without significant joint damage, and being 100% functional most of the time. This feels like my luck has run out. Age has caught up with me, and I'm facing increasing loss of function. Where's the line? I'm trying not to give up, but it's hard.
What strategy to fight fatigue is most effective for you?