Spondyloarthritis: a messy, confusing disease
By Dr Irwin Lim, Rheumatologist
Last weekend, I chaired a session on spondyloarthritis & ankylosing spondylitis.
My 1st task of the day was to remind the attending rheumatologists of the objectives of the meeting.
This was the slide I put up. It’s a slide made by Maxime Dougados, a very eminent rheumatologist.
This slides summarises the true story of a French soldier aged 19.
The story (and thanks to @Sam Whittle for telling me this) begins in 1957, when he suffered a triad of problems: urethritis, arthritis & conjunctivitis. Rheumatologists easily recognise this as Reactive Arthritis. Over time however, he suffered much, much more. This included:
- “amicrobial urethritis”
- “acute anterior uveitis without obvious aetiology”
- inflammatory back pain
In 1970, the diagnosis of Ankylosing Spondylitis was made because sacroiliitis was now obvious on the X-rays of his pelvis.
In 1974, he was one of the first HLA-B27 typed patients and was found to be HLA-B27 positive.
Later, he developed psoriasis as well as bouts of peripheral arthritis so he was diagnosed with Psoriatic Arthritis.
Reactive Arthritis, Anterior Uveitis, Ankylosing Spondylitis, Psoriatic Arthritis – all in the same patient.
Is this rather unfortunate patient suffering from 4 different disorders or a single one with different clinical presentations?
What I see is a messy slide representing a messy, confusing, overlapping disease or diseases.
Unfortunately, this describes the typical experience for many patients & the doctors/health professionals trying to make sense of the many different symptoms.
It’s not neat.
And yet, we rheumatologists need to make it easier to help improve diagnosis, management and monitoring of patients with spondyloarthritis.
Why?
Because we have effective treatments
Why?
Because the patients who suffer these diseases & these issues of delayed diagnosis & poor treatment deserve it.
Dr Irwin Lim is a rheumatologist and a director of BJC Health. You should follow him on twitter here. Arthritis requires an integrated approach. We call this, Connected Care. Contact us.Sydney Spondyloarthritis Centre: Update
By Dr Irwin Lim, Rheumatologist
We started the Sydney Spondyloarthritis Centre at the end of 2011. Sydney didn’t have any specific unit providing a comprehensive approach to patients with these intriguing rheumatic diseases and it was time it did.
For us health professionals working together, it’s an exciting time in the field with many advances in understanding. This has stimulated thinking about faster diagnosis, about how we monitor and manage patients with the diseases better, and it has fostered new treatment development.
I’m reviewing the progress of our service for a talk this weekend.
From January 2012 to April 2013,
- 130 patients received assessment and treatment
- 92 of these have the diagnosis of Ankylosing Spondylitis
- 38 have spondyloarthritis, without X-ray evidence of sacroiliitis
- 56 of the 92 patients with Ankylosing Spondylitis are on TNF inhibitor therapy
The included patients have been reviewed by a rheumatologist. After this, they are referred to our specific Ankylosing Spondylitis (AS)/ Spondyloarthritis (SpA) physiotherapists, Rachael Butterworth and Jean Redmond.
Rach and Jean then have a lot to get through with the patient, including:
- Furthering education
- Metrology (documentation of mobility & disease activity with a bunch of developed measurement indices) including BASDAI, BASMI, BASFI, chest expansion, enthesitis score, & ASDAS (see ASAS site for more details on these)
- Developing (and/or improving) a regular exercise program
- Working out specific physiotherapy treatments & exercises to target problems identified in their assessments
The plan is to follow up and monitor the effects of our treatments, both medication and non-medication.
As the AS/SpA patients improve, their treatment has also transitioned to our exercise physiology team, with the aim of gradually stepping up their exercise programs. Regular activity remains an extremely important component of AS/SpA management and we hope to create lasting lifestyle change.
In the last month, Flora, our rheumatology care coordinator, has been involved. Patients getting the initial diagnosis then see Flora for further education and Flora’s role is to be there for the patient. Helping guide them through any difficulties they may have as they negotiate living with the disease and as they negotiate a complicated health system.
I thought it worth updating you. Our Sydney Spondyloarthritis Centre is a work in progress.
I know there are some great Ankylosing Spondylitis/ Spondyloarthritis centres in existence in the public hospital sphere (eg Royal National Hospital for Rheumatic Diseases, Bath & at the Diamantina Institute, Brisbane), but I’m not aware of similar set-ups in a private practice setting.
Are you?
Dr Irwin Lim is a rheumatologist and a director of BJC Health. You should follow him on twitter here. Arthritis requires an integrated approach. We call this, Connected Care. Contact us.Your Fat Inflames
By Dr Irwin Lim, Rheumatologist
We should stop avoiding the elephant in the room.
We need to address the fact that many of our patients are overweight. In fact many are obese.
It’s easy to understand that those extra kilos contribute to the pain at your knees and feet.
It’s however clear that it’s not just the altered biomechanics that count. Fat contributes to inflammation. Fat worsens inflammation.
And importantly, losing fat improve outcomes. Pain as well as inflammation. And in turn, this reduces damage.
At BJC health, it makes sense that we address it given that our team includes physiotherapists, exercise physiologists and dietitians.
Check out this handout that we plan to give to our patients. What are your thoughts? I hope you don’t think we’re being too harsh.
Dr Irwin Lim is a rheumatologist and a director of BJC Health. You should follow him on twitter here. Arthritis requires an integrated approach. We call this, Connected Care. Contact us.I came for my arthritis. Why are you staring at my belly button?
Psoriasis at Umbilicus
By Dr Irwin Lim, Rheumatologist
This is such a nice photo. I had to share it with you.
Classic psoriatic rash.
He presented with various aches and pains, including a most frustrating chronic tennis elbow (lateral epicondylitis) affecting his cricket. A little dry scalp, somewhat scaly. And this rash, at the umbilicus. A classic, often “hidden” site.
I use this as a reminder that the diagnosis of Psoriatic Arthritis needs a high index of suspicion and then a hunt for clues.
In the last few months, I’ve written the following posts to try and raise awareness:
- The Arthritis that affects Nails, Tendons (Entheses) & Skin (link)
- Psoriatic Arthritis: it’s easy to miss (link)
- The Nails giveth the Diagnosis (link)
- Which PsA Questionnaires do you think a dermatology clinic will use? (link)
- Psoriatic Arthritis for Dermatologists: A Rheumatology Perspective (link)
- Tennis Elbow: sometimes it means more (link)
Phew! That’s a lot of reminders.
This blog’s also read, as you would expect, by our BJC Health team, and I’m writing this post with our physiotherapists and exercise physiologists in mind. I’m positive they, like their colleagues outside our clinic, are seeing patients presenting to them for tendon and/or entheseal (entheses = area where tendons connect to bone) problems. Sometimes, there is an underlying disease.
I’m working on helping us not miss this difficult-to-make diagnosis.
BJC Health established the Sydney Spondyloarthritis Centre in 2011. We raise the profile of these diseases, we provide a better pathway to diagnosis, provide education as well as world-class treatment. Most importantly, we care & we want to improve the lives of people suffering from these diseases. Read about it here.
Dr Irwin Lim is a rheumatologist and a director of BJC Health. You should follow him on twitter here. Arthritis requires an integrated approach. We call this, Connected Care. Contact us.Yum Cha with Ted Pincus (RAPID3)
Dr Herman Lau & Professor Theodore Pincus
By Dr Irwin Lim, Rheumatologist
Herman Lau and I had the opportunity to have Saturday brunch with Ted Pincus. Ted visited our Chatswood rooms and we conveniently walked upstairs to the Chinese restaurant for Yum Cha.
I’ve written about RAPID3 and how we were planning to use it in the clinic (read about & download it here).
Well, Ted invented the RAPID3 and has refined it over 30 years. He’s been a massive advocate for the use of patient-reported functional outcome measures to help us rheumatologists do a better job in helping manage disease .
Ted makes the point that patient questionnaires like RAPID3 actually predict outcomes such as death, work disability, joint replacement surgery, and how a patient functions in daily life, better than counting joints, measuring blood tests or trying to score changes on Xrays!
I’d read some of the original scientific papers published on the stuff. It’s dry reading. So, it was much better to hear it straight from the horse’s mouth.
I like hearing anecdotes. It’s also nice to be privy to the various reasons why the questionnaires have been adapted. It’s entertaining to hear stories about luminaries in the rheumatology world and to see how Ted has persevered through the decades when there has been resistance (many rheumatologists don’t like to formally measure things).
Ted’s evangelical. In the good sense of the word. And in our two hours together, he strengthened our resolve to use this tool.
He made a lot of sense.
How can rheumatologists know more about how disease affects patients than the patients themselves?
And if we agree that this isn’t possible, why aren’t we actually helping patients to tell us? In a more formal & documented way and even better, with a scientifically validated measurement that may save time & reduce mistakes/omissions!
(Click here for 8 reasons why rheumatologists should collect patient self-report data in routine clinical care)
Yum Cha was nice and filling. Ted’s reasonably proficient with chopsticks.
We even managed to discuss a Chinese version of MDHAQ/RAPID3 (a more complete questionnaire that the one we are using), which Herman plans to test on some of his Chinese speaking patients.
By the way, BJC Health started to use the RAPID3 at the start of the working week. Every patient seeing a rheumatologist, exercise physiologist, and physiotherapist has been offered the questionnaire!
Early days. I’ll have more to say in time.
Dr Irwin Lim is a rheumatologist and a director of BJC Health. You should follow him on twitter here. Arthritis requires an integrated approach. We call this, Connected Care. Contact us.Follow Us!
Most popular posts
Connect with us on Facebook
