As you’ll know if you’re a regular with PsA and Me, we think of remission as ‘fewer flares and a noticeable reduction in pain, allowing you to do the things you love’, but it can mean very different things to different people. That’s why communication between patients and doctors is so important in helping define your specific milestones.
If you follow our social channels (@PsAndMe on Facebook, Twitter and Instagram) then you will have seen we’ve just launched Mission Remission, an exciting new campaign encouraging people living with PsA and their doctors to have honest and open conversations about the (sometimes bumpy) path to PsA remission. At the heart of this campaign is a short animated film which aims to articulate how challenging this can sometimes be. Honest conversations during an appointment can sometimes feel a little daunting so before you watch the video we’ve spoken on your behalf to Rheumatologist Dr Akerker and PsA patient Lori-Ann Holbrook to reveal their perspectives on what makes a great consultation:
Rheumatologist Dr Akerker: For people with Psoriatic Arthritis, the relationship with their doctor can be a complicated one. We’re a vital source of support but, at the same time, seeing us is a constant, sharp reminder of the way their life has changed since developing PsA.
It’s natural that a rheum’s first few appointments with someone newly diagnosed with PsA are characterised by frustration and anger on the patients part. It’s also vital at this point to help them start working productively to fight back against their disease.
I begin this process by asking general questions – how much do you know about PsA, what’s the history of your diagnosis etc. – but I try to get specific as quickly as possible. The most helpful thing my patients can do for me is to get personal. I need them to tell me exactly what practical difficulties they experience on a day-to-day basis and what their short- and long-term treatment goals are – their personal definition of remission.
This can be surprisingly difficult information to uncover. To begin with, many patients have a rather short-term perspective, focussed simply on being able to manage their everyday activities without pain. I’d estimate that only around one in ten patients I see raise the subject of long-term goals and remission by themselves and so I see it as my duty to widen their horizons and get them thinking about the future again.
Lori-Ann Holbrook, PsA patient: I’m incredibly lucky in that I have a fantastic relationship with my rheumatologist, but this isn’t a twist of fate – I work hard to maintain our connection and make sure that we work together to keep my PsA on track.
My first piece of advice to other people with PsA would be to make sure you see your rheumatologist face-to-face as much as possible. Phone consultations and emails are great if you’re having an SOS moment, but nothing helps build a relationship like sitting in their office for a proper catch up.
For me, a great consultation will mean that we look beyond my physical symptoms to discuss how my PsA is affecting my mental health, my energy levels and my broader quality of life. If your doctor doesn’t bring these elements up, then make sure you do! I’m a naturally very open person, but totally understand why some people find it hard to talk about certain aspects of living with PsA. My advice in these times would be to take a deep breath, be as matter of fact as possible and remember; your rheum is a pro – they have helped countless other people with PsA and will have been instrumental in helping other people overcome these problems before.
With this advice in mind, have a watch of our Mission Remission animation. Which patient do you relate to most, and what advice would you give to help pave the way to remission?