I’ve been seeing the same rheumatologist for over 20 years (!) and we’ve always had a good relationship –he seems genuinely interested in how I’m feeling, and how my studies are going. My rheumatologist is also on the board of experts who sign off on new drugs to be put on the Pharmaceutical Benefits Scheme (PBS) in Australia, so he knows not only what’s available now, but what will be, and will says things like ‘this drug will be an option for you in 6 months’ time…’
So I’m always getting access to the best and newest biologics that (taxpayers) money can buy, but the problem is, they’re not making me feel much better. Well, actually that’s only half the problem: while they don’t make me feel any better, my blood test results DO show an improvement. So my rheumatologist will pull up graphs on his computer and say ‘Look at this! This new drug is doing wonders for you!’ and I have to explain things like how my toe joints are so swollen I can’t wear my regular shoes, or how I had trouble brushing my hair this morning.
He listens, but I can see it’s really hard for him to dismiss the graphs and blood test results. So while I think it’s not working and am keen to stop this particular drug and try something else, he thinks that it is working on some level, and it would be silly to stop while my blood results qualify me for an extra round of this drug, which also makes sense.
At my most recent appointment, we went through the same conversation, and I finally asked ‘But isn’t there anything else I can try…?’ He thought for a moment, and then said ‘Well, you can get 5 sessions of physiotherapy a year on Medicare (the government’s medical scheme)…’ and I was like ‘Are you serious?! Yes!! Let’s give it a go!!’ I was also a bit miffed he hadn’t mentioned it before – I guess being so high up in the realms of new whiz-bang drug treatments, he’d forgotten about the other alternatives.
I started using my ‘physio’ sessions and it’s been great – I’ll have to save that experience for another post. But the point is we reached a kind of compromise: my doctor was satisfied as I was staying on the latest biologic, and I was satisfied that I was trying something new. And it’s this balance that’s important – my rheumatologist, with his qualifications and experience is entitled to make professional recommendations about my treatment, but as the patient I’m also entitled to ask for what I need too. So ask questions, ask what’s available, ask what you’re entitled to. Don’t stop believing that there’s something else out there, something better!
Meet Hannah and other friendly folk on Arthur’s Place Social, our Facebook Group
(Any opinions expressed in Hannah’s blog are not necessarily shared by Arthur’s Place. Nothing that you read in Hannah’s blog constitutes medical advice.)
