Scott Denham
Scott Denham
Day to day I’m not sure how I'm going to be feeling until I wake up. I could have sore wrists and hands, knees, hips, lower back, or neck and need to complete a mobility routine to try and improve function for the rest of the day. It's not just the joints though, sometimes it's just an overall feeling of malaise, flu like symptoms or extreme fatigue and you don't know why.
Some days I'm too rough to do much at all so I have to rest up/call in sick to work. I have a physical job as a gardener so this can also affect me throughout the whole day, not being able to complete certain jobs or perform to the best of my abilities. The mental pressure of knowing that I have to last a whole day at work before I can get home to rest is overwhelming.
Fatigue builds up very fast so I have to be very careful with how much I exert myself physically and mentally otherwise I’ll end up having to rest up for a couple of days. I can't plan to do much in my spare time as I don't know how I'm going to be feeling from one day to the next. I generally feel rough in the evenings so I struggle to help with cooking, cleaning, and daily tasks around the house.
It affects my relationships with my wife, family and friends as sometimes I can't socialise or be there when they need me. All of the above have a constant impact on my mental health and wellbeing.
While booking anything in, holidays or time away we have to consider my 4 weekly infusions (tocilizumab), so I can't leave the country for more than 4 weeks to visit family or friends overseas.
The 4 weekly, 3 hour visits to the hospital knowing that the medication isn't good enough to get me through a few days, let alone the 4 weeks it's supposed to cover, is hard to live with. I have failed all other available treatments for Stills in NZ, many of which made me feel much worse. The lack of options of new treatments makes me feel hopeless for improvements longer term.
It would be amazing to have access to more options of Stills disease treatments, in particular Ilaris (Canakinumab) to try and suppress a different immune pathway as the tocilizumab has definitely lost efficacy for me. I would hope it can combat more of the symptoms and reduce them down to a more manageable level so I can get back to my life again. The dream is that it could put me into some form of remission which I feel I've never reached so far.
With my Rheumatologist specialist at the hospital we have tried to capture blood results over several months to prove to Pharmac that I need this medication, but the results don't show what they need to see to approve it. As I’m already on a biologic it masks the numbers needed to show levels of inflammation etc. It's dangerous for me to come off my medication, get really sick just to get blood results to show how I'm feeling, I should be trusted as a patient. We are stuck in a loop and I'm left struggling on a medication that doesn't cover the symptoms of my condition as its efficacy has dropped after almost 6 years of being on it.
