SAA GLOBAL SPONDYLOARTHRITIS SUMMIT May 67 2022 Event RecapA blue banner post with posters from the Spondy Summit.
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SAA Global Spondyloarthritis Summit Event Recap

SAA Global Spondyloarthritis Summit Event Recap – 12 Things I Learned at the SAA Spondy Summit in 2022

Hi friends! AxSpa Awareness Month ended today and I want to thank you all from the bottom of my heart for supporting me throughout this month with messages, shares, comments, and more. It’s time to repay you, my readers, with the most up to date information from the SAA Global Spondyloarthritis Summit Event Recap which I attended virtually on May 6 and May 7, 2022.

First, a huge thanks to the SAA for providing me with this amazing opportunity. This year’s event featured 12 expert presentations and it was packed full of great info and support from the specialists mentioned below. I’ve had a hard time this month with my own Spondylitis health crisis. Being able to take advantage of the SAA’s playback options in May was perfect since it was accessible for folks like me who are on the other side of the world and can’t attend events at midnight through 8am my time. You can read my personal story from my diagnosis in 2009 at My Ankylosing Spondylitis Story. My diagnosis is actually Ankylosing Spondylitis and there is a difference in terminology, which is explained further in this recap.

I did a big no-no for this event and logged in at midnight both nights to live tweet what I was watching, but it’s clear now I didn’t pick up a lot at the time of night so I rewatched those episodes.

This is a concise breakdown of what I learned from each expert and the day they presented on at the summit. I’ll be using this information to create additional articles for this site on specific topics. As you can see it’s LOADS of information. These points are from my Twitter timeline and that is why each presentation is in a bullet list.

May 6, 2022

SAA Global Spondyloarthritis Summit – Arthritis and Nutrition – Micah Yu, MD, MHA, MS

It is always refreshing to hear from doctors who are also Spondyloarthritis patients! As I was munching through some midnight Doritos (rare for me), I felt very guilty listening to Dr. Yu talk about how important nutrition is for arthritis patients. So, I put the Doritos away and gathered some extra notes for you that are things I have mentioned before on this blog. Dr. Yu covered a lot of information in his presentation, but here are the points that stood out to me:

Micah Yu, MD is a board certified rheumatologist and talked extensively about the following points:

  • 60% of your immune system is in your gut!
  • SpA patients, plus patients with RA, lupus, Sjogrens and vasculitis have a lot of things in common, especially Gut dystobiosis
  • Gut dystobiosis means an out of balance gut environment
  • Dr. Yu uses this point to talk to us about what we can add to our diets to help fight inflammation.
  • Fiber is extra important for arthritis patients because it helps fight inflammation!
  • Americans are in a fiber crisis. They average 15g of fiber per day which it’s not enough.
  • Women need 25g and men need 38g per day. Fiber helps fight inflammation
  • According to studies conducted by the Arthritis Care Research Council, fiber also helps fight knee pain.
  • Conclusion: Add more fiber to your diet!
  • Studies show that 1000mg of cucurmin help fight arthritis.
  • Conclusion: Add more phytonutrients to your diet!
  • A high salt Western diet will contribute to inflammation. When you eat too much salt, you’re inciting an inflammatory response throughout the body.
  • Conclusion: Pay attention to your salt intake!
  • A Mediterranean diet is great for arthritis and cardio health.
  • Conclusion: Eat OMEGA-3 foods and fish oil!

I have mentioned this many times on this blog, but I want to stress again that there is no disease or condition in the world that cannot be made a little bit better by feeding your body the right things to promote healing.


SAA Global Spondyloarthritis Summit – Exercise, Physical Therapy, and Keeping Active with Spondyloarthritis – Angelo Papachristos, BSc., BScPT, CAFCI, MBA

The first thing that Advanced Practice Physiotherapist Angelo Papachristos mentions is that his most asked question is which exercise and PT program will fix a patient.

His reply is that there is no single program that will help. You must take a targeted approach that goes beyond daily activity. Here are some tips:

  • Provide education to patients
  • Stretch/Strength Re-Education is designed to target cervical, thoracic, and lumbrosacral spine as well as peripheral joints
  • Cardio Conditioning – You must improve your overall cardiorespiratory fitness and vital capacity that goes beyond what you are doing in your home day to day.
  • Mobilize. Avoid manipulation
  • Prescribe assistive devices
  • Use therapeutic modalities
  • Ergonomic & functional abilities evaluation

SAA Global Spondyloarthritis Summit – Behavioral Therapy for Pain Management in Spondyloarthritis – Afton Hassett, Psy.D.

Dr. Afton’s presentation is based on exploring behavioral interventions for chronic pain, specifically treatment targets for behavioral interventions.

  • Pain is the most common symptom of patients with rheumatic diseases, including spondyloarthritis
  • Pain is a sensory process, but more importantly, cognitive and affective factors matter, whether the underlying pain is inflammatory, non inflammatory, or both
  • Patients need to employ a behavioral approach that targets enhancing quality of life and empowerment
  • Psychological intervention does not happen much with spondyloarthritis
  • This is a shame because patients benefit from behavioral interventions
  • She mentions a focus on movement to help patients, but many patients are afraid of movement because of pain or injury
  • Behavioral therapy also improves sleep which all patients benefit from

Treatment Targets – Changing thoughts, feelings, and behaviors

  • Learn pain management skills
  • Increase physical activity
  • Decrease fear of movement
  • Improve sleep and mood, especially anxiety and depression
  • Increase health-related quality of life – despite your illness, you should have a good quality of life
  • Enhance resilience – Dr. Afton specializes in this and investigates what is unique about patients do very well with pain and what is their resilience? How can we teach this to others?

Five Types of Common Behavioral Interventions

Behavioral Therapy (BT) – Relax, breathe, imagine –

  • Identify and changing unhealthy behaviors
  • Includes: Relaxation via breath training, guided imagery and meditation, teaches sleep hygiene, activity pacing, problem solving
  • We learn behavior and that means we can unlearn it!
  • She mentions guided imagery in fibromyalgia, which is one of the most painful conditions you can have, helps immensely
  • Thoughts lead to feelings. Example: I hate this traffic jam! Can lead to road rage in those of us who process things negatively

Cognitive Behavioral Therapy (CBT) – takes the basis of behavioral therapy and helps us change unhelpful thinking

  • Targets of CBT: change dysfunctional thoughts and behaviors that impact functioning and well being
  • Relaxation training, increasing activity and pacing, behavior sleep medicine, record your thoughts to reframe how you think, setting goals, and my favorite as well, pleasant activity scheduling
  • Note from Carrie: Please see my series on art therapy for pain!
  • CBT reduces pain, disability, and distress

Mindfulness-based Therapies (MBSR, MBCT) – based on second wave CBTs with a great focus on resilience and positive emotions

  • Awareness that arises through paying attention and staying in the present moment
  • Primary targets: non-judgement awareness in daily life, promote serenity and clarity, experience more joy, access inner resources for healing and stress management, progressive muscle relaxation, meditation

Acceptance and Commitment Therapy (ACT) – Notice, accept, and embrace!

  • Patients are taught to stop avoiding, denying, and struggling with inner emotions
  • Move towards acceptance of these emotions and that they are appropriate responses to a difficult situation
  • Fighting feelings only makes you worse
  • Listen to self-talk, decide if an issue requires action/change, make a commitment to stop fighting past emotions, and start practicing more optimistic, confident behavior
  • ACT has a larger effect on pain interference than mindfulness based interventions

Positive Activity Interventions (PAI) – Capitalize, grow, thrive

  • Resilience interventions target the enhancement of positive emotions and well being
  • Born from school on positive psychology and what is going well in your life
  • Successful is helpful because they’re fun: increase positive activities that you can do
  • As humans we tend to focus on negatives, so we need to work on positive reflection and what goes well in life
  • PAI uses character strengths in new ways, such as our natural abilities in creativity, social intelligence, and leadership
  • Focus on purpose in life and meaning: gratitude journaling, acts of kindness, savoring a beautiful day, victorious self, creating meaning in life, practicing optimism, positive services, strengths and values

Behavior Self-Management

Chronic illness lasts, so these behaviors help us prepare for years. We have to manage our lives and our selves for the rest of our lives to ensure we have enjoyable lives


SAA Global Spondyloarthritis Summit – Medical Management of the Spondyloarthritides – Mohamad Bittar, MD

Dr. Bittar’s presentation focused on how a rheumatologist decides on a course of action to treat patients.

  • Dr. Bittar starts his presentation by introducing the family of spondyloarthritis: Axial and Peripheral, where there is gap and patients can have both axial and peripheral arthritis
  • There is no one cause that leads to these diseases: genetics, environment, mechanical stress
  • Medical management approach includes: It’s important to determine what clinical manifestations need to be targeted with treatment, understand the pathophysiology of the disease, know the comorbidities to rule out contra-indications, discuss with patients their preferences, treatment options, and potential side effects
  • NOTE FROM CARRIE: I’m learning from you because doctors do not do this in Taiwan and patients are left to find this information on their own, which is why summits like this are so important!
  • What are contra-indications? If patients have chronic kidney disease, active ulcer or bleed, blood thinners, can’t use NSAIDS
  • Doctors must be aware of these before treatments! Then monitor carefully.
  • ANOTHER NOTE FROM CARRIE: My last blog explains how my rheumy was not monitoring me on my new treatments and how I ended up in my current situation.
  • Corticosteroids: His team meets a lot of patients who have tried them or they ask about trying them
  • What about steroids? Per recommendations, patients with axial disease should NOT use oral steroids for axial disease and psoriasis
  • Why? Using steroids doesn’t help with the spine – risks outweigh benefits
  • We use steroids for smaller joints, uveitis, etc
  • We do not use steroids for axial disease involving the spine or psoriasis
  • Local injection steroids only happens with smaller joints
  • Conventional synthetic DMARDS (sulfasalazine, methotrexate) only used for patients with peripheral arthritis and uveitis, we don’t use it for axial disease.
  • If these meds are used, frequent monitoring is required for liver injuries, etc
  • For patients with axSpA on TNFi, the recommendation is against low dose methotrexate
  • Patients on TNFi, patients need to watch for fevers, chills, any type of infection, skin rashes, non melonoma skin cancer, (he advises going to dermatologist to check for cancer screening), plus med induced lupus
  • JAKi, we do not use them if patient has active IBD, doctors must watch for infections, neutropenia, candidiasis
  • JAKi slows radiographic progression! Secukinumab (Cosentyx) and Ixekizumab (Taltz)
  • What do we do with stable disease? Patients ask if they can stop.
  • More than 50% of patients who stop biologics relapse and they experience loss of efficacy after re-introduction. (Patients stop because they are feeling better, get sick, go back on the biologics, and the biologics don’t work)
  • CONCLUSION: In stable AS, the recommendation is against stopping treatment and against biologic tapering
  • In patients who are stable on TNFi and NSAIDs treatment, it’s ok to stop NSAIDs and keep them on TNFi
  • Same for patients on TNFi and DMARDs, it’s ok to stop DMARDs and keep them on TNFi
  • Emphasis on continuing physical therapy
  • Surgical options are based on case by case indications, but they avoid spine surgeries if possible
  • Finally for non inflammatory pain such as secondary osteoarthritis, fibromyalgia, myofascial pain, be sure to talk to patient about these secondary conditions!
  • There is a prevalence of fibromyalgia in axSpA patients – 16.4%
  • Sex differences: 1 to 1 between females and males
  • Females are delayed with diagnosis by 8.8 years compares to 6.5 years in males
  • Females carry a higher disease burden, worse pain, and quality of life, higher prevalence of fibromyalgia and some extra-articular manifestations such as ulcerative colitis
  • Females also have lower response rates to treatment and lower medication adherence
  • We need more doctors to be aware of this and continue studies
  • This disease should not be relegated to HLA-B27 because is not as prevalent in other ethnicities
  • This disease is much more than HLA-B27!

Note from CARRIE: None of this is disclosed to patients in Taiwan. Taiwan bases access to treatment on a patient being HLA-B27+!


SAA Global Spondyloarthritis Summit – The Link Between Stress and Chronic Disease: Rethinking Stress Management – Lauren Smith, Ph.D

Clinical Health Psychologist Lauren Smith, Ph.D. has spent years researching the link between stress and chronic disease. Her presentation was focused on connecting those links and offering ways to rethink stress management. Dr Smith talks about the different kinds of stress, but she focused on the Fight & Flight stress response in her presentation.

What is stress? Stress is an emotional response to an event or challenge. Stress causes a neuroendocrine and hormonal response in the body. Things go wonky when our stress responses goes on too long. Our stress responses are based on perception and control of the stressor.

  • Two types of stress: acute/immediate and chronic
  • Acute stress is a disaster or a car wreck
  • Chronic stress is uncontrollable and long-lasting. Examples: marital stress, trauma, pandemic
  • Your genes, your social factors and environment, and your psychological triggers all contribute to how you process stress.
  • To understand why stress leads to chronic illness, we must understand these three factors: Medical care & personal behavior, living & working conditions at home and in communities, and Economic, social opportunities, and resources
  • Social Determinants of Health Social Factors include: racial and ethnic discrimination, access to healthy food, access to healthcare, location and physical environment, socioeconomic status, and education
  • One example of many used in presentation: 1 in 6 Black adults have diabetes compared to 1 in 10 White adults
  • Britain Common Cold Study in 1991: The conclusion in this study was the higher the stress level, the more likely you are to get sick with a cold or flu.
  • BOTTOM LINE: Chronic stress impacts immune response and chronic illness develops.

Techniques to manage stress:

  • Prioritize sleep! Figure out what works for you & do it.
  • Do things to help calm your brain such as reading or art. (Visit my art for arthritis section to see how patients use art to heal.
  • Improve time management
  • Quit smoking
  • Maintain healthy diet. Dr. Smith recommends visiting the SAA website for further information on diet’s effect on Spondylitis.

Finally, let’s change how we think about stress: Eustress vs. Distress. Our perception of stress matters! When we think about stress, we can view it as a challenge or threat.

Distress: confused, apathy, burnout, excitement, too much stimulation & overwhelmed

Eustress: positive stress by focused attention, emotional balance & rational thinking 🙂


SAA Global Spondyloarthritis Summit – Spondyloarthritis 101 – Judith Smith, MD, Ph.D.


I’ve been waiting for this one! I waited for recaps due to time zone differences in Taiwan.

Spondyloarthritis is a long word!

Spondylo = arthritis

arth = joint

ritis = inflammation

Dr Smith also broke her presentation down into mini presentations, which I have compiled for my readers:

What is Spondyloarthritis?

  • People with Spondyloarthritis can have much more than spinal involvement. It can also involve other parts of the skeleton or other areas of the body.
  • People with articular involvement includes root joint involvement: spine, hips, shoulders Peripheral: wrists, knees, ankles Enthesitis: tendons & ligaments inflammation Extra-articular: eyes, gut, digits, skin, heart, lungs
  • Because of the involvement of these areas, Spondyloarthritis is an umbrella term for: Ankylosing Spondylitis, Psoriatic Arthritis, IBD-associated arthritis, Reactive Arthritis, Acute Anterior Uveitis, Juvenile & Undifferentiated Spondyloarthritis
  • In regards to how all these are related, we now think of Spondyloarthritis as a unified diagnosis.
  • Some people have more axial involvement while others have more peripheral involvement. Some folks fall in the middle & have full body involvement.

SpA features for diagnosis:

  • back pain for 3 months
  • under 45 years of age
  • Evidence of inflammation on x-ray or MRI, labs, symptoms & family history are also taken into consideration
  • If SpA is seen on x-ray, it’s referred to as radiographic Spondyloarthritis
  • If it’s earlier in the disease, it might take a more sensitive mode like MRI which is referred to as non-radiographic spondyloarthritis.
  • For peripheral Spondyloarthritis, you need arthritis, enthesitis, or dactylitis PLUS other SpA features.
  • Inflammatory Back Pain aka IBP: early onset under 40 years of age (I was 34), Pain for 3 months, insidious onset, alternating buttock pain, pain is worse at night, morning stiffness, pain improves with movement, good response to NSAIDS

Spinal arthritis is different to other types of arthritis:

  • starts as inflammation in the spine
  • new bone formation
  • if unchecked, fusing of the spine results in loss of S curve, which prevents people from standing upright
  • In addition to spine, people also experience Peripheral Arthritis and enthesitis which affects more than 50% people with SpA. It involves weight bearing joints: knees, ankles, hips, shoulders.
  • Children often experience it mid-feet and it’s called ‘tarsitis’
  • Peripheral Arthritis is more common in certain parts of the world (Latin America & Asia)
  • 1/3 to 2/3 of people have enthesitis.
  • Achilles tendon – most frequent.
  • Plantar fascia – hot spot.
  • It can also include pelvis, knees, rib cage, & shoulders.
  • Dactylitis is also known as sausage digits. Your hands and feet show swelling.
  • Dactylitis is seen fairly infrequent in axSpA but it is more common in Psoriatic Arthritis.
  • Eyes – Acute Anterior Uveitis and presents in 20% to 35% of patients. It’s inflammation in the front of eye and is the most common extra-articular issue

Psoriasis

  • Presents in 5-15% of axSpA patients
  • More common with peripheral arthritis
  • The more severe the skin condition, the more likely people are to have axial disease
  • More common in White people than African American people

Crohns and Ulcerative Colitis

  • IBD – Huge overlap
  • 5-8% have overt inflammatory bowel disease
  • 50-60% have microscopic inflammation that they aren’t aware of
  • 10-20% of IBD patients develop axSpA
  • More common in Middle East & North Africa

Who gets SpA?

  • 1-2% of population
  • USA – axSpA prevalence is 1.4% & 0.5% have Ankylosing Spondylitis (radiographic AxSpA)
  • As common as Rheumatoid Arthritis
  • Some correlation of risk gene (HLA-B27)
  • 0.2% South East Asia – 1.6% Northern Arctic
  • Sex differences: Ankylosing Spondylitis: The most severe form of axSpA is more common in men
  • 2-3x male vs female (radiographic AxSpA)
  • nrAxSpA and peripheralSpA (ie. PsA) same ratio female = male
  • Peak onset is mid-20s
  • 20-30% onset in teens

What causes SpA?

  • Genetics sets the stage – HLA-B27 and other genes
  • Environment interacts with genetics which causes, immune dysregulation
  • AS is one of the most highly genetic conditions
  • 10-20% risk with immediate family members
  • Other related conditions (eye inflammation, psoriasis, & IBD run in the family)

What causes SpA?

  • HLAB27 is highest in AS and it is lower in Psoriatic Arthritis, Reactive Arthritis, and IBD Associated Arthritis
  • HLA-B27 IS NOT THE WHOLE STORY
  • The microbes we share our bodies with play an important role in causing SpA
  • Mechanics – In Spondyloarthritis, mechanical stress can also feed inflammation.
  • When we look at areas of the skeleton that have the most arthritis, it’s typically weight bearing joints such as knees and hips

What can be done about #SpA?

Dr. Smith wins for citing one of my favorite authors, Douglas Adams.

  • Don’t panic!
  • Work with a team: rheumatologists, PTs, etc
  • Healthy habits: stop smoking, eat right, exercise
  • Anti inflammatory medications
  • Education
  • Medications are most effective when started early!

And that concludes Day 1! WHEW!



SPONDY SUMMIT May 7, 2022 – World AS Day

SAA Global Spondyloarthritis Summit – Unmet Needs in Axial SpA: Research Agenda – Helena Marzo-Ortega, LMS, MRCP, PhD

More often than not, doctors are bound by regulations which means they are obligated to consider cost of medications and start with cheaper options for axSpA patients. It’s the same here in Taiwan.

We should be able to decide what treatment is best for patients at which stage of their disease without having to think about cost of treating options for axSpA patients. I think we can all agree with this!

What is the ultimate aim of treatment for axSpA patients?

Inflammation matters. It will lead to damage. We must manage inflammation. We should also not try to measure damage as much and aim for no damage.

Dr. Marzo-Ortega emphasizes PERSONS and PEOPLE, not patients.

Understanding the patient’s perspective and our fears is imperative. What are patients’ top two fears? PAIN and quality of life!

A big question is whether axSpA persons who are stable can stop or taper meds. There aren’t many studies on this but it is summarized that treatment should not be stopped even if stability had been achieved for 6 months.

The good news is that you can go back on treatment and achieve stability. However, we don’t know who will do well & who will flare after stopping or reducing treatments, so we must identify biomarkers to see which drugs work.

We need to focus on slowing axSpA progression & preserve function. Studies show:

  • 76% have probs with exercise
  • 69% – problems getting out of bed
  • 69% – problems getting dressed
  • 68% – problems with stairs
  • 71% – problems with cleaning

Studies show time and time again that the #1 priority is to stop pain and control fatigue. AxSpA fatigue is one of the hardest things to cope with.

Sex differences matter with axSpA. Females experience an extra year of delay to diagnosis. They have more disease activity and commonly present with more peripheral involvement.


SAA Global Spondyloarthritis Summit – Depression & Anxiety in Spondyloarthritis: Prevalence, Impact & Screening – Sinead Maguire, MD

Why should we worry about depression and Mental Health at a Spondyloarthritis Summit? Because depression is a leading complication of chronic disease. The WHO estimates depression will be the leading cause of severe disability worldwide by 2030.

Dr. Maguire’s team noticed that patients were struggling during Ireland’s severe lockdown restrictions with the pandemic. They asked patients to answer a four-question survey to show the effects of social isolation via telehealth.

The social isolation survey asked four questions to patients attending their rheumatology clinic. Responses came back with many patients answering that they felt nervous, anxious, on edge; that they couldn’t stop worrying, they had little interest in doing things; and that they felt down, depressed, and hopeless. Here is what they learned.

  • Depression is a leading complication of chronic disease
  • High prevalence of depression in patients with rheumatic disease
  • Among patients w axSpA, women have a higher rate of severe distress across spectrums: general health, sleep quality, mood, disease activity
  • Women more likely to be employed and working from home
  • Studies shows many times that females score worse again in worse disease activity, bigger impact on being able to function, and greater impact on quality of life
  • Survey showed a significant level of psychological distress in women: higher rate of severe distress, decline in health, worse disease activity, higher rate of mood disturbance
  • People with depression and axSpA have one thing in common: They struggle with symptoms such as pain, stiffness and other symptoms that impact ability to function for a long time before they got their diagnosis.
  • A UK 2021 study shows depression and anxiety symptoms when starting TNF inhibitor is associated with impaired treatment response in axSpA.
  • Depression affects patient response to treatment!
  • Anxiety in Spondylitis is not well studied and it’s often lumped in with depression
  • Doctors should screen for undiagnosed anxiety via HADs-A
  • Overlap of symptoms. Not all patients w depression have anxiety and vice versa
  • Changing classification criteria means older research has only been looking at radiographic disease. Non radiographic disease MUST be studied more.
  • Bottom line: More research needed.
  • There is more info available for patients Psoriatic Arthritis and depression
  • The prevalence of patients with PsA and depression is 20%
  • Patients have poorer response to treatment over time with depression
  • Patients on anti depressants need lower dose of DMARD & vice versa

Takeaways: Depression in SpA

  • Mental health affects physical health
  • Depression is common in SpA & associated with worse outcomes
  • Depression significantly affects women with axSpa
  • Undiagnosed depression is a major challenge
  • Doctors should implement HADs & PHQ-9 for quick screening

What should I do if I’m struggling with mental health and I have AxSpA?

Think about basics: exercise, hobbies, good sleep, and friends. Remember it’s not your fault! Reach out and talk to someone. Let someone know you are having a hard time.


SAA Global Spondyloarthritis Summit – Intimacy and Chronic Illness – Iris Zink, Certified Rheumatology Nurse Practitioner

This topic is rarely discussed so let’s learn about sexual health. Intimacy and chronic illness is not purely physical. It’s about connecting with your partner at a deep level. Her interest in sexual health started with a 25-year-old patient named Mary who said that she couldn’t open her legs wide enough to have intercourse with her partner. Ms. Zink did a lot of research to help her patient and that incident led to her current interest in intimacy and chronic illness.

  • AS used to be called the Question Mark disease or Bamboo Spine because of how your skeleton changes when it’s left unchanged
  • Many treatment places will not ask about sexual health, but it’s a super important part of life!
  • 2/3 of people with hip and back osteoarthritis have sexual health problems
  • 62% of patients with RA report difficulties
  • 50% of AS patients have issues with lowered libido, satisfaction, and frequency of sex
  • 71% of patients said their fibromyalgia had put a strain on their relationship
  • Not everyone is able to tolerate penetration, so it’s important to maintain physical touch

Thank you, Iris Zink. That was a tough presentation to watch for me and I appreciate your frankness in helping us better understand our bodies.


SAA Global Spondyloarthritis Summit – Spondyloarthritis: Ages 20 – 40 – James T. Rosenbaum, MD

Dr. James Rosenbaum’s presentation on Spondyloarthritis: Ages 20 – 40 includes learning from the doctor’s perspective and finish with the patient’s perspective to ensure you can make sure your appointments go smoothly.

  • It’s rare for Spondyloarthritis symptoms to begin before the age of 15
  • Vast majority of patients become symptomatic between the ages of 20 and 40
  • Symptoms rarely begin after the age of 40
  • The age of symptom onset is about the same for men and women
  • Both sexes experience a long delay before they get a diagnosis

Factors contributing to health with patients:

  • Medicines!
  • Diet is incredibly important! The microbiome in your gut and bowel contributes to your disease! Diet makes a huge difference.
  • The problem is diets are different for everyone. What works for one patient might be different for another. D
  • Sleep is VERY important! It’s not easy, and you must establish sleep routines.
  • Exercise is important because the more you use them, the more they’ll move smoothly. With exercise, you must listen to your body.
  • If an exercise is painful, listen to your body and stop!
  • Environment can trigger arthritis: humidity, climate, viruses,
  • Genetics are not everything
  • Being happy makes you feel better. If Dr. Rosenbaum had a magic pill to ensure happiness, he would share it. But we all know we must work on this ourselves
  • Your support system is VITAL to your health.
  • Stress relates to all of the above! It affects everything.

Dr Rosenbaum stresses that your physician should determine how active your disease is. There are different ways to do that, such as a physical examination, but many physicians use the BASDAI Index to determine your disease activity. It stands for Bath Ankylosing Spondylitis Disease Activity Index.

Note from Carrie: At the time of writing this, my BASDAI score is 8.9 which means my disease is very active and not under control.

  • Many insurance companies will not improve a biologic treatment if your score is too low.
  • Medicines are often the emphasis for the physician
  • Medicines are a risk, they’re expensive, and they’re inconvenient, but if your illness means you can’t get out of bed, your treatment should be geared towards ensuring your medicine benefits you and outweighs the risk
  • His analogy is that his job is like a server at a restaurant and a good medical provider will describe the alternatives so you understand
  • Since Spondylitis affects people in their 20s to 40s, reproduction is an issue
  • Western doctors do not believe methotrexate is an effective drug for patients with Spondyoarthritis
  • He hopes many of us are NOT taking methotrexate
  • Additionally it should not be taken during pregnancy
  • Same for male patients. You should stop taking methotrexate before you become a Dad

The Patient’s Perspective – How To Use Your Time Efficiently With Your Doctor

  • Be realistic with your goals for each visit – Your doctor should ask you what you want to accomplish and he emphasizes that you should focus on one or two things instead of 20 things
  • Be knowledgeable about your disease
  • Bring your medicine bottles or a list of your meds
  • Be sure your doctor has any needed outside records
  • Find a doctor you feel comfortable with
  • Find a doctor who welcomes a second opinion

Thank you, Dr. Rosenbaum. Your presentation was informative and enjoyable and I appreciated the speed that you talked at. It’s very clear and concise. As another guest mentioned, your presentation felt like a warm hug and that also describes my own feelings about your presentation.


SAA Global Spondyloarthritis Summit – Aging with Spondyloarthritis (AxSpA over Age 50) – Muhammad Asim Khan, MD, FRCP, MACP

axSpA over 50: What are the complications and risks to those of us with long-standing disease? Dr. Khan breaks his presentation into ‘good news’ and ‘not so good news’.

  • There are enough clinical features that lets rheumatologists know that they do not need to rely on imaging results on x-rays to offer a diagnosis
  • AxSpa has many manifestations outside of the skeletal system including: enthesitis, peripheral arthritis, dactylitis, aberrant ossification, acute anterior uveitis, psoriasis and nail changes, gut disease such as ulcerative colitis or Crohn’s; it can also affect lungs, heart, kidneys, etc.
  • The biggest thing to know is that if your disease is left untreated, it might possibly lead to ‘bamboo spine’ which means vertebrae have fused together and the patient develops a forward-stopping posture
  • Decreased survival with AxSpA is delayed diagnosis, lower level of education and socioeconomic status, smoking, hypertension and heart/lung issues, diabetes and obesity, spinal fracture, disability, infections, malignancy, hip arthroplasty
  • Many healthcare providers are still not aware of this disease and they often thing axSpA is a rare disease
  • We know it affects 1% of the population. It is not a rare disease.
  • Approximately 40% of patients don’t have elevated CRP and ESR and many patients are NOT HLA-B27+
  • NOTE FROM CARRIE: Taiwan’s diagnostic criteria don’t make any sense since doctors must go by elevated CRP, ESR, and HLA-B27+. No wonder so many patients here are suffering! See this link and overarching principle for diagnosis and treatment in Taiwan.
  • Classification criteria ARE NOT MEANT to be used to diagnose axSpA!

BAD NEWS: The average symptom duration before diagnosis is still as long as 14 years!

  • Patients wait a long time before seeking medical help and when they do, they see GPs, orthopedists, chiropractors, pain clinics and others
  • There is then a further delay of 10 months before they are referred to rheumatology
  • Poorer quality of life, increased depression and anxiety, impaired sleep
  • Patients are twice as likely to be too disabled to work
  • There is a high burden on society due to cost of care and functional disability
  • Spinal fractures happen and are four times more likely to happen compared to general population
  • Spinal fractures can also happen and be severe even if a patient falls from standing height
  • Spinal fractures often happen in the cervical spine (neck)

The GOOD NEWS: Human perseverance

  • Recent studies show improving survival, especially patients with minor disease
  • There is better recognition of Ankylosing Spondytlitis in women, especially with nr-axSpA because of better definition and increasing availability and use of MRI
  • More effective management moving from NSAIDS to b-DMARDs (target TNF and IL-17) and more recently ts-DMARD which are targeted synthetic disease modifying drugs
  • We must focus on early disease detection, which is becoming more common
  • We are creating better social support, better healthcare, and better prevention techniques every day

SAA Global Spondyloarthritis Summit – Psoriatic Arthritis: Fundamentals – Philip Mease, MD, MACR

I fully admit that Dr. Mease and Dr. Judith Smith were at the top of my list and I was greatly looking forward to their presentations. I also wish Dr. Mease was on my team. He had so much info to offer that I can take to my rheumatoligist for my own PsA diagnosis, and he seems like a warm-hearted and caring person. A+ to his presentation. It’s impossible to cover everything, so I’ve narrowed it down to the most helpful facts for me and my readers. Dr. Mease also had mini presentations within presentations, so I’ve organized it by list for you.

Psoriatic Prevalence in USA

  • Psoriasis occurs in 3.2% of pop
  • Prevalence of PsA in NA & Europe is 10-30%
  • US – Expected prevalence of PsA is 0.32 – 1.0%
  • The higher figure is similar to what we see in Spondyloarthritis & RA
  • PsA is a complex, polygenic autoimmune disease with diverse clinical features
  • Factors contributing to Psoriasis and PsA Genetics: HLA-C, IL128, TRAF3/IP2, FBXL10, IL23R Immunologic: T-cells, cytokines Environment: infections and trauma Vascular: tissue pathology
  • PsA is a unique inflammatory arthritis that occurs in ~30% of patients w. psoriasis & remains under-diagnosed.
  • Clinical features are diverse
  • Early diagnosis and effective treatment are critical

PsA Clinical Features

  • Peripheral joint inflammation
  • skin, joints, & destructive changes in finger joints
  • spine can be involved and arthritis in SI joints
  • Dactylitis
  • Enthesitis
  • Uveitis, IBD, nail changes
  • Arthritis mutilans affects <5% of PsA patients, marked deformity & joint destruction, shortening of fingers, erosion of joints, assoc w. long disease duration & predominant in females
  • Dr Mease talks about dramatic loss of bone and cartilage in hands due to disease activity. True deformity. Several different pathologic processes happening at the same time which makes PSA a real conundrum to treat.
  • PsA patients have skin disease. In most patients, it comes on an average of 10 years before arthritis occurs. Some patients experience it simultaneously.”

PsA Radiographic Features

  • Juxta-articular periostitis & ankylosis
  • Joint osteolysis
  • MRI images ‘light up’ w inflammation changes in joint, adjacent bone & tendon
  • He also shows an image of what it looks like after TNFi treatment
  • It was encouraging to hear his patient had resolution of graphic inflammation after 12 weeks of TNFi treatment!
  • He talks about examiner putting pressure on joints to check swelling. It feels like tofu between bone and tissue.

Enthesitis in PsA

  • Dramatic inflammation at Achilles heel and legs.
  • This is a unique phenomenon in PsA and is more that what we see in axSpaA where we we see peripheral inflammation sites.
  • We don’t see this in RA
  • Enthesitis: The site of attachment of tendons, ligaments or joint capsule fibers to bone.
  • Enthesitis is inflammation of the enthesis. Ligaments and tendons become anchored.
  • Dr Mease shows a presentation of a skeleton and shows us areas that might be tender and enflamed. Shoulders, elbows, hips, knees, ankles, feet are all included
  • Dactylitis is a harbinger of worse progression of damage in that digit. It’s also associated with overall worse disease activity.

Prevalence of Axial Disease in PsA

  • PsA is different from AS
  • We see spine disease in AS from the beginning
  • In PsA, spine disease tends to occur in 40s and 50s
  • HLA-B27 is less frequent in axSpA but is a genetic risk factor for both diseases
  • 40% of patients have some evidence of spine disease
  • May lead to ossification in spine, but it tends to be less dramatic than what is seen in Ankylosing Spondylitis
  • Some people might have HLAB27+ : 85% in axSpA patients, but only in 30% of Psoriatic Arthritis

Asymmetric Sacroilitis in axSpA

  • The slide shows significant change in the pelvis of AxSpA patient. One side has a lot of change. The other doesn’t.
  • Difference from one side to the other more characteristic of PsA unlike AnkylosingSpondylitis
  • He shows slides that show radiographic presentations between PsA Axial Disease vs AS.
  • Axial PsA patient may not have significant inflammatory back pain symptoms.
  • In AS, 100% have inflammatory back pain.

How do patients with and without axial disease in PsA differ?

  • Significant differences: More disease severity present in AxSpA patients.
  • More depression, more enthesitis and skin severity
  • Less likely get into a state of minimal disease activity

PSA and axSpA comorbidities

  • Uveitis
  • Colitis
  • Cardio disease
  • Metabolic Syndrome
  • Fatty liver
  • Depression, suicidal ideation
  • Fatigue
  • Fibromyalgia
  • Osteoporosis

PsA Therapeutic Groups

  • DMARDS, methotrexate, sulfasalazine, leflunomide
  • TNF inhibitors
  • IL12/23i
  • IL17i
  • IL23i
  • T cell modulator
  • Targeted synthetic DMARDS include PDE4i and JAK inhibitors

Minimal Disease Activity Criteria – MDA

If you meet 5 of these items you are in a state of MDA. If you meet 7, you are in a state of VLDA (Very low disease activity) These are desirable goals for all patients!

Minimal Disease Activity Criteria – A patient is classified when they meet 5 of 7:

  • tender joint count <1
  • swollen joint count <1
  • PASI <1 or BSA <3
  • pain VAS <15
  • patient global activity VAS <20
  • HAQ <0.5
  • tender entheseal points <1

Conclusion and Takeaways:

  • Communication with med team is A MUST!
  • Electronic medical records in today’s age means it’s important your other docs can see these conditions
  • Mutual access to network of local dermatologists and rheumatologists
  • Use of screening questionnaires
  • PsA Biologic therapy, particularly TNFi & other biologics, can benefit all clinical domains and inhibit progressive structural damage
  • A ‘treat to target’ strategy has been shown to yield optimal outcomes
  • NEW THERAPIES ARE EMERGING!

“What is the BASDAI Index interpretation? A score of 4+ is a sign of suboptimal control of disease. Patients w 4+

  • Good candidates for change in treatment;
  • May benefit from biologic therapies;
  • May be candidates for enrollment in clinical trials

And that’s it and NOW you know why it took me all of May to watch these presentations, tweet about them (I lost count after 200 tweets), and compile that information for you! All while moving through my own massive flare-up and being able to benefit by taking this new information in to my own rheumatologist so I can push for better treatment! See you in June!

I'm a chronically ill Canadian who has been living in Taiwan since 2006. I'm a bit of a jack of all trades! I love art, gardening, flower arranging, reading (that's an understatement if you've seen my GoodReads profile), and snuggling with my cats. Animal videos make me cry. I hate cooking. Nothing makes me happier than seeing my garden bloom! Learning about new cultures and exploring the world has been my thing since I started traveling at age 19. A self-professed autodidact, I can speak comfortably on many different subjects and hold a special place in my heart for science, technology, law, health and medicine, and history. You can find me nerding out at home most of the time due to being chronically ill and housebound. If I'm not engaged in one of the activities listed above, I'm probably building websites. Check my About page under Carrie Kellenberger to learn why I'm taking you on this journey with me through My Several Worlds. I can't wait to get to know you better!

7 Comments

    • Carrie Kellenberger

      Hi Karen,

      Thanks for reaching out through our group and I’ll have a look and see if I can find some axSpA and AS specialists in South Africa. I’m so sorry. I know your daughter is suffering right now.

      • Judy Giannou

        Thanks for sharing! Have been on the AS journey for 15 years. Just off a 4 week flare, I enjoyed reading these summaries! Always lots to learn!
        Be well , stay well!

        • Carrie Kellenberger

          Hi Judy! Thank you so much for stopping by and for taking the time to read through it. It’s a massive event recap and I really wanted to publish it for May 31st, but I’m glad readers are being patient while I correct my typos. I’ll have more manageable chunks of information for you later this month. I hear you on your flare. My current flare started March 8 and hasn’t slowed yet. They’re so tough. Take care!

    • Carrie Kellenberger

      Hi Karen,

      As luck would have it, ASIF just hosted their annual meet-up in Copenhagen and they posted today about your South African representative. Her name is Maranda van Dam. Your South Africa organization is called Axial Spondyloarthritis Association of South Africa and you can visit their website here: https://axspasa.org.za/

      Click on this link to find a rheumatologist in your area: https://axspasa.org.za/find-a-rheumatologist/

      Like I mentioned in my AS support group, please also follow ASIF which is the Axial Spondyloarthris International Federation, as they are connected worldwide: https://asif.info/ and they are also on FB at https://www.facebook.com/asif.spondylitis. You can see your SA representative at the top of their FB page right now.

  • Richard A. Howard, MBA

    Hi Carrie, Thank you for this wonderful summary of the Global Spondyloarthritis Summit. I love your summary. Each one of the 20 minute presentations had a lot of information and it’s wonderful to read your take-a-ways. I feel you captured much of the information. My favorite thing about your summary are your personal comments. how you were looking forward to Dr. Smith and Dr. Mease’s presentations. Your notes regarding how things are different in Taiwan was fascinating. Love your shout-outs to the presenters like to Iris and Dr. Rosenbaum. Speaking of Dr. Rosenbaum agree completely about his style – it feels like a dose or hug of healing. My take-a-way from his was the ‘punishment must match the crime’ meaning take the medication (punishment) required to effective for SpA (the crime); no less & no more. Also reading how you were dealing with a flare during the Summit made the summary added to the urgency and importance of having educational events like this. Thank you again Carrie. Love, love, love your work.

    • Carrie Kellenberger

      Hi Richard! Thank you so much for stopping by to read my long-winded notes! I got a lot of feedback from sharing this post within Spondylitis groups that I’m in and I was happy to be able to provide that info thanks to the SAA! Ah, Taiwan. I love it, but it’s so frustrating and it seems to take so long! It’s better than it was 14 years ago though! I also felt the same way about his advice regarding punishment matching the crime.

      I’m also not going to lie. Hearing Dr. Judith Smith quote Douglas Adams really pulled my heartstrings. When we focus on making sure patients are seen as humans and not just ‘patients’ we also must remember that doctors are also humans and not just ‘doctors’. She really had me smiling and was so easy going in her presentation.

      Attending while flaring was actually quite helpful as I was able to speak to a few doctors after they finished their presentation. I spoke directly to Dr. Helena Marzo Ortega and she gave me some great tips to bring up during the height of my flare. Dr. Yu is also very helpful and I’m chatting with him on his IG right now. 🙂 MINUS THE DORITOS, of course.

      Thank you so much again for providing this opportunity for me to attend. I’ve wanted to make some posters for social media to help disperse information, but I’ve been too sick. I had my new rheumy appointment today and he says there is still a lot of inflammation, but it’s going down. Perhaps I’ll be on my feet by September. I hope to get those posters out for info for patients soon. All the best to you!

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