12/8/2024: Zoom meeting (not hybrid) Q&A with pain management specialist Robert Overbaugh MD. Dr. Overbaugh not only is an experienced expert with pain management, he publicly shared that he also lives with AS and can relate to questions on both levels. Questions included goals of pain management (such as return to function) and a wide breadth of topics such as medications (including new classes of medications in the pipeline that could revolutionize pain management), procedures (such as ablation), how pain medications work, addiction, behavior health support, pain reprocessing therapy, PTSD, pain psychologists role, chiropractic, medical massage, acupuncture (he will refer an acupuncturist with spondylitis experience will come to a future meeting), cryotherapy, salt water float tanks, muscle relaxers. Dr. Overbaugh discussed issues related to the balance of reward and risk to discuss with your health care provider with each of the topics. Access to specialists within the VA & private health care providers. n=19 (zoom only meeting).
11/17/2024: Zoom meeting (not hybrid). Q&A with nutritionist Michelle Schirra. Also brief updates from the American College of Rheumatology conference in Washington DC. n=17.
10/13/24: Online zoom (not hybrid) interactive discussion & mutually supportive meeting.
9/8/2024: Jin Lee Ph.D. (psychology) presented “Stress & Flares.” She also included basic disease information in her presentation and paused throughout to answer questions. N=24 (Zoom 20, 4 in-person).
8/11/2024: Very interesting discussion on a variety of topics. We kept with the tradition of allowing people attending for their first meeting to have time to share their experiences with symptoms, diagnosis , treatments, and other issues that they have faced without the benefit of a support group up until now. Fortunately some people attending for the first time were parents of people living with AS. They came to learn about the disease and their experiences added a ‘loved ones’ perspective that sometimes included helplessness and trying to find the balance of being supportive but not directive to their adult children. People shared adverse events and their experiences switching from medication to medication. The group was able to answer questions about the recommended treatment guidelines for specific comorbidities such as Crohn’s. Request for speakers on imaging and gut trafficking. Zoom required a new link and some people were not able to log in to the meeting. N=14 (10Zoom, 4 in-person).
7/14/24: A lively discussion on numerous topics. This was a Zoom meeting (not in-person) and thank you to Victoria for moderating the Zoom conversation. Suggestions for upcoming meeting includes a pain management doctor and also an advocacy speaker. People stayed on an hour past the usual end time of 4pm in order to get to know each other better. A quarter of the attendees were new to the group. n=15.
6/9/24: Physical Therapy for spondylitis. Angelo Papachristos, BSC, BSCPT, MBA, ACPAC presented on spondyloarthritis and physical therapy. Very thorough presentation and robust Q&A session. “great meeting; I really enjoyed it. I hope he returns” (I have more questions to ask him.) n=43 (35 Zoom + 8 in-person.)
5/3 & 4/2024: The virtual Global Spondyloarthritis Summit included 6 presentations with Q&A, 4 breakout interactive, moderated discussions, exhibit hall, activity lounge, social media wall, poster hall, swag bag, etc. The presentations and slide decks are available on this website. The Los Angles group encourages people to attend the Summit rather than hold a separate meeting in May.
4/14/2024: Terrific meeting and discussion about all types of spondylitis topics.
3/10/2024: Tai Chi for spondylitis with Dr. Soneka Lee DPT. Terrific presentation, demonstration that we all participated in, and Q&A. People new to the group were given priority to share what issues they are experiencing living with AS. Several people stayed long after 4pm to discuss some acutely difficult situations. Other topics included: lung issues; BackInAction Again exercise and yoga videos on spondylitis.org website; the great difficulty getting access to rheumatologists, biologics and other treatments in Central America; Feelings of not being able to do everything needed to improve, not looking forward to doctor appointments just to hear more bad news, feeling the cost of making mistakes in management of the disease. n=25 (20 zoom + 5 in-person)
2/11/2024: Interactive discussion on a variety of topics. We met earlier than usual to avoid conflict with the Super Bowl and our planned presentation had to reschedule due to an illness. That gave us an opportunity to open the discussion to whatever was on people’s minds. Very grateful how people in this group are so open to sharing their own challenges, experiences and to support others. A person happened to find our group that had chronic pain from a different condition (spondylosis) and that brought interesting dimension to the meeting. n=17 (14 zoom+3 in-person)
1/21/2024: Group discussion on variety of topics. Pain management, JAK inhibitor drugs, sleep. Issues such as medication, sports, long term outlook, for a parent of a 16 year old recently diagnosed with AS. Person asked for people’s experience, if any, with low dose naltrexone. As people living with AS, many of us know that stress impacts our disease activity, but how much do we know why that is? Discussion about fares intensity, frequency, and duration. Grateful people made this meeting on the 3rd Sunday. Steve & I want to thank Victoria again for facilitating the discussion for people on Zoom. n=16 (11 zoom+5 in-person)
12/10/2023: SpA Life Hacks. For our year-end, holiday season meeting, we had an fun and helpful sharing of our favorite tips, tricks, and gadgets for living our spondylitis. Including your life hacks for getting through the holidays. items shown included seat cushions, posture reminder (GO2), stand up desk, computer keyboard & mouse that is super sensitive and easy to use for people with peripheral issues.
11/19/2023: Presentation by John Frazier, personal trainer that lives with AS. Author of the book, Through The Pain. John shared his life experiences and strategies for managing his disease. After his presentation and Q&A, the group had time to discuss a wide number of topics that people had questions about. n=26 (18 zoom+8 in-person).
10/15/2023: Rheumatologist Pendleton Wickersham, MD (also lives with AS) held a Q&A for nearly 90 minutes. The feedback has been terrific both from people on Zoom and in-person. Wide range of disease experience attended, from people diagnosed on Wednesday through people diagnosed four decades ago. Lucky to have 3 other Support Group Leaders join us. Topics included studies that illustrate the advantages to aggressive treatment early in the disease. Setting medication expectations to 70-75% improvement. Options if no response from a biologic and options to try if have reduced efficacy over time. Combining treatments. Insurance role in medication options and the outrageous cost for some. Things that are shown not to be effective for most people. Things to try to add incremental improvement above the medication. Exercise/activity. Smoking. Pain/symptoms may not correlate with progression (fusion). Symptoms are individualized. Distinguishing and managing flares that are predictable and those that are not. Centralized pain. Diet including starch free, keystone, supplements. Brain fog. Sleep. Heart and aortic valve. Comorbidities that are related and some that have no evidence for being related. Potential causes of SpA. Genetics role. Tremendous relatively recent progress on understanding the disease and reason for tremendous hope. Risk of treatments Vs risk of untreated disease. And more! After the Q&A we held separate meetings, one for people on zoom and one for people in the conference room. N=40 (32 Zoom) + 8 in-person. Next month speaker: Personal trainer that lives with AS.
9/10/2023: Thank you Victoria for facilitating the informative and moving ‘Roundtable’ discussion. Several topics were addressed by the group, many as a result of a person that is struggling for years trying to get an accurate diagnosis. Not unlike other’s experience in the group, particularly women, physicians have been dismissive of her pain and struggles going from an athlete to inability to perform daily functions. People shared that they had all the classic signs, including fusing in the T & C spine and family history of AS. More than one person shared that attending their first meeting years ago improved the trajectory of their disease and life. hybrid n=18 zoom, 6 in-person.
8/13/2023: Clinical nutritionist Michelle Schirra had an extensive presentation on the latest information for diet and nutrition for spondylitis and immune mediated diseases. Michelle fielded questions in an extended Q&A.
- 7/9/2023: Dr. David Yu, renown rheumatologist/researcher specializing in spondyloarhritits (retired) presented on anxiety/depression with AS. Everything in life builds upon your world view and character. There are ways that people find helpful in breaking the cycle of anxiety. Case studies presented of being enriched by caring for others and self; of finding appreciation for life and relationships even with physical challenges that humans experience. Dr. Yu led a journaling exercise and answered questions about the disease. He invited the people that attended to contact him. n=30. 23 Zoom + 7 in person.
- 6/11/2023: Thanks in part to the helpful SAA’s hybrid conference equipment, the group wants to continue with hybrid meetings for the foreseeable future. Conversation led by a guest host. Discussion regarding comorbidity with hypermobility conditions that a couple people in the group were dealing with. Presentations from the recent Global SpA Summit were referenced. A person talked about stress and was kind enough to say Rich’s Spondylitis Plus article was helpful to him. A member of the group is also leading a cherry picking trip next weekend. N=12. 9 Zoom + 3 in person.
- 5/5-6/2023: Global Spondyloarthritis Summit event. All 12 presentations are archived on spondylitis.org
- 4/16/2023: Once again, we were able to first talk with a couple of people that were very recently diagnosed. This was their first meeting and chance to virtually meet with lots of others that live with AS. One male in his mid 50s that was diagnosed after years of pain, when recurring uveitis led his ophthalmologist to hasten the Dx. The second person, is female in her mid 20s finally diagnosed after 7-9 years of pain that was earlier diagnosed with Fibromyalgia. Other topics included dogs & SpA, the benefits, commitment, and risks of having a pet. Rheumatologist recommendations. How to lower your cost of medications. How people manage the various health care specialists that never seem to coordinate with each other. Recommendations for stand-up desks and other products. Also, topics relating to depression. Even after years of great management of SpA, the cumulative effect of difficulties such as injuries, loss of ability to do things one enjoys, plus illness & death of loved ones can create a downward spiral of spiritual wellness. I’m grateful that this group is here for everyone, wherever they are currently in their life’s journey. n=16
- 3/11/2023: We had a really interesting meeting. Once again we had several core members along with people attending for the first time. Some either just diagnosed and are still unclear about their diagnosis. We had a speaker, Tejpal Gill PhD, scheduled for half of the meeting time; giving us time to talk as a group before and after the speaker. Frankly just hearing from a person dedicated to basic science research in spondyloarthritis adds hope for the future. Feedback about the speaker has been wonderful. She has a gift of explaining complicated topics in a concise, clear, and relatable way. Wow, really terrific. Concepts such as why would things in the gut affect a disease. Why it may be that changing a diet may not always be enough for people to stop a disease process, but why it is promising research for spondylitis. What do terms that we often hear mean such as leaky gut, genomics, proteomics, metabolomics, and IgA. What scientists understand about specific bacteria in our gut, overall make up of microbiome that differs from people living with SpA from “healthy controls”, and metabolites. Why trying something new that is unproven for our disease may not be a good idea (ie someone asked about digestible hydrogen peroxide), and why exactly it is important to talk to your doc before trying something. Why there are so few drugs that get approved and why does it take years before a drug does get approved. TY to David for facilitating the Q&A. Click to view the slide deck. n=26
- 2/19/2023: Super interesting interactive discussion. n=16
- 1/8/2023: “Infections” presentation plus Q&A by Dr. Vyacheslav Alec Pekler, NMD. MS. CST. Naturopathic Medical Doctor, MS in Environmental Toxicology, Craniosacral Therapy. n=14 (Click here to view power point presentation.)
- 12/11/2022: The meeting was super interesting. Some people newly diagnosed and trying to figure all this out. One ‘youngish’ person recently survived stage cancer to then start getting SpA symptoms and Dx. The importance of sharing information and resources is so important. n=
- 11/13/2022: Lively discussion on number of topics including association with IBD and difficult to treat issues. Rich shared update from ACR in Philadelphia. n-11
- 10/2/2022: “How Do I Get Through the Day with Spondylitis” speaker Christine Stamatos, DNP, ANP-C experienced HCP with pharmacolgic and nonpharmacologic approaches to pain. Click here to view the slide deck. n=15.
- 9/11/2022: Interactive “roundtable” discussion on a variety of topics including sharing concern about adverse events that could happen with a biologic and people shared their expereinces and thought process for making the decision regarding biologic medications. Biosimilars were discussed. Problem getting medication approved and at the right dose was discussed with solutions to that problem that others have used. Discussion regarding what is exactly happening in the body with spondyloarthritis and are medications effective or are we just using drugs developed for other types of arthritis with some effectiveness for us. Discussed recent news items and the upcoming hike. n=14.
8/14/2022: Speaker Liz Maines, PhD, clinical psychologist answered all the questions posed by the group and provided some wonderful resources including an invitation to contact her and helpful resources. The issues our group raised are all covered in the new upcoming edition of Straight Talk by SAA, which she is one of the authors of. The 7 Psychological Stages of Chronic Illness by Dr. Jennifer Martin and also the Kickstart 30 for wellness are two non-spondylitis specific resources. n=20. - 7/16/2022: The group met to do the Baldwin Hills steps again.
- 7/10/2022: Recap from the Saturday morning outings of doing the steps at Baldwin Hills. Uveitis and eye strain issues. Memory issues since started with spondylitis. Lots of comorbidity and complication issues. How is bone density measured for SpA. Snacking with SpA. Favorite & helpful activity/exericise for people: pilates, foundation training, yoga, cycling, functional medicine, physical therapy, swimming, massage. Arranged for photography session for Spondy+. n=13.
- 6/12/2022: Fascinating interactive discussion on a number of issues including experiences with TNF, IL17, JAKs, and related meds including COVID-19 vaccines and evusheld. Also pregnancy and AS/meds. Photographer answered questions about the upcoming photo shoot. A member organized an outing to climb the steps at Baldwin Hills. n=14.
5/15/2022: People really valued the Global Spondylitis Summit last week on May 6&7, some people plan to continue watching presentations over the next few weeks. When does disease prevent people from working consistently? The advantages and disadvantages of filing for disability. Depression and AS. People are planning an 8am group walk on the Baldwin Hills steps. n=9. - 4/10/2022: Lively interactive discussion. How to navagate COVID & Spondylitis? How do I know that I actually have SpA when all the symptoms makes sense but medications are not working? How do I get the most out of my upcoming rheumatologist visit? Why does Medical Gas-Lighting seem so prevalent for people with spondyloarthritis and why does this keep happening to women in our group? Massage tips from going to hate them to love them. n=14.
- 3/13/2022: “What not to eat” Clinical Nutritionist, Michelle Schirra, discussed tests she does to evaluate gut health and provided general tips on foods to avoid. Zoom. n=12
2/6/2022: Flares! Have you had a flare? How would you describe it? How do you manage them?. Really interesting discussions. - 1/9/2022: What Causes AS? Presentation by rheumatologist/researcher Michael Weisman, MD. Included the role of physical (mechanical) stress in a genetically predisposed individual. TY David for facilitating the group’s Q&A with Dr. Weisman. Other topics rasied include cannabis & kratom, how to manage treatments when also have other medical issues such as aortic valve disease. Taking biologics when have an infection. Suggestion for the group to do the stairs at Baldwin park together. n=31.
- 12/12/2021: Exercise was the central topic discussed. Activity level ranged from difficulty to be active at this time to people that run, cycle, go up the Baldwin Hills steps, and use a rowing machine for cardio exercises. A couple of people have run the marathon and 1/2 marathons. Other activity include low weights, yoga, and Pilates. Several people find swimming and warm water aquatics beneficial. Local warm water therapy pools include: Santa Clarita Aquatic Center, LA Valley College heated therapy pool, and Two Trees PT in Camarillo. n=15.
- 11/14/2021: Rheumatologist Mohamed Bittar discussed complications and comorbidities with spondylitis. Back pain, chronic back pain, inflammatory backpain, morning body stiffness, peripheral inflammation 30%, enthesitis such as Achilles tendonitis 29%, uveitis 25-45%, psoriasis 5-16%, Crohn’s or ulcerative colitis 5-8%, subclinical gut inflammation 50-60%, cardiovascular, liver issues, osteopenia/osteoporosis, psychological issues such as depression, sleep disturbance, fatigue, fibromyalgia, qauda equina syndrome, neurologic issues. Dr. Bittar answered questions and also presented a case study illustrating the physical and social ramifications of delayed diagnosis, importance of activity/exercise, not smoking, and how completely fulfilling life is possible with AS. TY to Carolyn our guest host for leading the meeting. n=19
- 10/10/2021: After self introductions and a discussion on topics of interest to attendees, we had a watch party of the recorded presentation by Dan Clauw, MD. Dr. Clauw is a Professor of Anesthesiology, Professor of Medicine (Rheumatology) and Professor of Psychiatry at the University of Michigan. He serves as Director of the Chronic Pain and Fatigue Research Center. We watched a segment and then paused to talk before continuing on.
9/12/2021: The first hour was an interactive discussion with a variety of topics including sharing resources for physical therapy home routine, how to measure inflammation when blood markers are not useful, and peripheral issues/symptoms. Jenifer Liptawat, DACM, L.Ac. Doctor of Acupuncture and Chinese Medicine presented for the second hour of the meeting on the benefits of acupuncture for inflammatory arthritis. Dr. Liptawat answered questions including How do you know it’s working? Her practice is proactive on this and does a thorough assessment, trial treatment, and uses various tools to measure efficacy. n=15. - 8/8/2021:Michelle Schira, nutritionist, spoke about her approach to working with a functional medicine practitioner. She tries to help her patient clients find the right combination of foods that will work for their bodies to feel better, and their specific rheumatological condition. She tries to start with food and allergy sensitivity testing, she does various blood tests and gene testing to see if the body has a build up of other toxicities, how is the methylation process in the body working, etc. She said in many ways this is a long-term process to find and tweak those dietary changes that will work for someone that may have AS, fibromyalgia, crohn’s, etc. While doing this, she sometimes works with supplements, in addition to dietary food changes for those who work with her. There is a process of detoxing as well. Top allergens are often gluten, dairy, soy, corn, sometimes eggs, certain green vegetables are very harsh on the body. SIBO – small intestinal bacterial overgrowth diets and detoxing and other similar topics were brought up. Lastly, she spent a bit of time speaking about the MTHFR gene testing, SEID and other genes that (when turned on,) can wreak havoc on our immune systems. The meeting was an overview and everyone would have to do their own individual plan with a nutritionist to have it work for them to help reduce some of their painful or other disease symptoms. Post nutritionist discussion focused on medicine expectation and how to know if it’s working good enough. TY Amy for this meeting summary. n=10-14*
7/11/2021: Interactive discussion on Zoom. Several topics discussed including experiences related to biologics and side effects. n=7. - 6/13/2021: Speaker: Victoria Greenberg, from SAA’s Advocacy Committee, shared her experience and tips on ‘how to channel your inner bulldog on behalf of your and your loved ones’ medical needs. Victoria has been successful advocating for the right spondylitis medications for her brother and even successfuly through Medicare. The second half of the meeting addressed the various questions from a person that was newly diagnosed, regarding confirming the Dx, factors that go into medication decisions, exercise, and diet. n=10.
- 5/16/2021: Michelle Decker of Soothing Hands Mobile Massage answered all our questions about massage therapy and spondylitis. There was time available for other topcis and concerns. Super supportive and interesting conversation. We continue to have people recently diagnosed as well as people diagnosed many years ago attend each meeting. n=15.
- 4/11/2021: Discussed the Seminar that was held on Saturday, including continuing the conversation regarding the pro and con of letting employers know of your spondylitis diagnosis. Canes, wheelchairs, and handicap parking. Whole host of questions from the mother of an 18 year old daughter that was recently diagnosed. n=14.
- 3/14/2021: Great meeting for getting to know eachother. Discussed difficulty in finding a rheumatologist in some areas (such as SLO). Discussed the C19 vaccines and the most recent FaceBook Live video on the vaccines. The potential applicability of diagnosing with new artificial intellegence with body scans technology. n=7
- 2/14/2021: People shared their experience having COVID-19; taking the COVID-19 vaccine; Living safely in a COVID restricted world while living with spondylitis; Difficulty with health care providers coming up with an accurate diagnosis; How they made new medication decisions during the pandemic. Manny put a human face on the SAA staff and encouraged people to call (818) 892.1616, and email info@spondylitis.org to speak to a real person at the office. n=15
- 1/10/2021: Roundtable interactive discussion. Supportive group with people newly diagnosed as well as people diagnosed many years ago. Topics included diet, acupuncture, decision making process for medications including starting a biologic, advocacy, how to find a rheumatologist and other HCPs such as acupuncturist, etc. n=16.
12/13/2020: Disability attorneys with experience with clients living with AS presented information and answered questions. “Disability and Spondylitis,” Presentation with Q&A by Michael Liner, Esq. & Jennifer Morgan, Esq. of Elevate Disability. Zoom. n=13
11/8/2020: Personal trainer, Alex Levine, led a discussion on exercise and spondylitis. Alex then demonstrated his favorite exercises for spondylitis and answered questions. We then discussed other topics including what to do when a current biologic medication doesn’t seem to be working or is having some adverse effects and how to discuss options with the physician. - 10/3/2020: Patient Education Seminar with Rheumatologist, Dr. John Reveille on the medical managment of spondyloarthritis in a changing/COVID world. Dana Hall, MA LCPC presented on the emotional impact of spondylitis including topics such as Toxic Positivity. In addition, there was a national support group meeting with over 100 people on Zoom. Free exercise and meditation videos. Exhibit Hall with booths on advocacy, Walk Your AS Off, Blow Up Radio, UCB, AbbVie, and more. Presentations and Booths remain accessible for the month. https://spondylitisfallseminar.vfairs.com/en/
- 9/13/20: Interactive Discussion ‘Roundtable Meeting’, with several topics discussed including sharing experiences with the use of biologic medications, COVID19 & spondylitis issues, exercise, exercise equipment (water rower), FODMAP diet, personal story from someone that does not take medications, osteoporosis, studies currently recruiting including rna study and the SAA-COVID study. n=15.
- 8/9/2020: Q & A with long time SAA Board of Directors member and Beverly Hills Rheumatologist Dr. David Hallegua. Discussed medications (current and pipeline), types of spondyloarthritis, experience of long term patiens, importance of exercise and staying upright, COVID19 and vaccines & biologics, theories regarding the cause of spondylitis. Dr. Hallegua wove summaries of several studies and experiences with patients. n=17.
- 7/12/20: Presentation on chirpractic care and spondyloarthropathy by Carolyn Martin, DC. Dr. Martin is very experiece with patience that have spondylitis. She noted the type of care chiropractors can provide for us and answered all our questions. Candid discussion on the zoom call regarding good and not so good experiences and how to find a chiropractor that will add value to your health. Topics included a team approach to health care with a life long disease, changes in individual care and treatment over time, the importance of diet and lifestyle in spondylitis, why diet, stress, activity affect inflammation. n=17.
6/14/20: Really good discussion regarding ‘how do people know for themselves that they have spondylitis if it doesn’t show up on xray or a lab test?’ 20% have been told “it’s all in your head” by a doc at some point. Each person shared what type of spondylitis they have, how long they have had it, and what issue they have on their mind. Polling the room, we found: 50% saw 2-3 Rheums and one person saw >6 Rheums before getting an accurate diagnosis. 71% were on a biologic. 35% opt to not go a non biologic route. 18% can’t find a medication that meets their needs. Dsicussion about how to know if it is time to switch meds because there seems to be too much pain even while on meds. Also discussion regarding side effects people have had to meds. No one thought exercise made spondylitis worse. 43% said sometimes exercise is not possible because of a flare. 57% would prefer to be more active. 79% felt activity makes their SpA better. regarding pain levels at this time, 59% rated their pain fairly mild today 0-3 out of 10 (0=no pain, 10=bedridden), 34% at a 6+. A couple of people have spines that are nearly fully fused, but no longer feel pain. One in a very forward bent position. No one thought that they have had COVID-19. Zoom. n=19. - 5/17/20: Zoom meeting with Nutritionist Michelle Schirra, CN, MS presenting and answering questions about diet, inflammation as it relates to spondyloarthritis. Discussion regarding newly diagnosed, what people consider prior to starting biologics. The meeting officially ended at 4pm, however, several people stayed on to talk for an extra hour. n=26.
- 4/19/20: Our first Zoom meeting. Discussed large number of issues including the impact of ‘stay at home’ policies on spondylitis. Reasons why flares may be worse or better at this time. Information on a few studies including the SpA-COVID regestry and the nr-axSpA study. n=25
- 3/8/20: Presentation by Sandy Logan on Feldenkrais ‘Awareness Through Movement’. At SAA office.
- 2/9/20: Lively interactive discussion at SAA office over a whole host of issues raised by individuals of the group.
- 1/5/20: We met at the Tamkin Auditorium in UCLA’s Ronald Reagan Medical Center to hear presentations on cannabis (medical marijuana). Dr. Ziva Cooper, PhD of the UCLA Cannabis Research Initiative presented on the history and current state of cannabis research and access for medical or recreational purposes. Rheumatologist Dr. Veena Ranganath MD then presented rheumatology specific studies on cannabis. They are running a pacebo controlled study on CBD and RA. UCLA. n=33.
- 11/9/19: Speaker: Reflexology, Rhonda Funes. Applied reflexology principles for spondyloarthritis. SAA office location. n=5.
- 10/12/19 (Saturday): Roundtable discussion in West LA, TY Greg for hosting the meeting. Discussion topics included: How does knowing you carry the HLA-B27 gene affect your deicison to have children? Enthesitis – What do people do for pain, especially when prescribed treatment isn’t working? Service dog to help with AS mobility. Watsu: water massage to help with pain. Biologics: pros and cons for a new patient being advised to go on a biologic for AS. Abridge – smartphone app to record conversations with doctors (in California, you apparently don’t need to get permission from your doctor to record), and it creates a summary of each conversation for you. n=9
- 9/8/19: Super interesting Interactive “roundtable” discussion on several topics. We were able to get to know each other at this meeting. As usual, a variety of people in the room which made it easy to support and relate to others on every subject. Some had long standing disease and some diagnosed last year (from Dx in 1988 to 2018). Some had uveitis, some IBD, some with skin issues, some with peripheral disease. Some not taking medications, some taking several (including biologic/MTX/steroid injections). Many have tried several biologics. Of the 6 people satisfied with the results of their current biologics, they were taking one of five different medications (either Cimzia, Remicade, Enbrel, Cosentyx, or Humira). Two people with long standing AS were very satisfied with the results using nonmedicinal holistic approaches. One person ran a half marathon yesterday, one person lives with a chronic ‘8’ pain level and is challenged enough to make it through the day, one feels no pain. SAA office location. n=9
- 8/11/19: Speaker: Naturopathic Medicine Physician, Dr. Vyacheslav Alec pekler, NMD, MS, CST, presented on naturpathy medicine and how it relates to spondyloarthritis disease. Dr. Pekler discussed naturpathy medicine, reviewed general approach to medical care, specific approach to AS. click here for his presentation pdf. There was also a discussion regarding women with AS and hormones, there was a related study done on this. SAA office location. n=10
- 7/14/19: Speaker: Physical Therapist, Stacy Barrows, PT, DPT, GCFP, PMA-CPT. presented on self-care. ‘Selfcare is a key to living a balanced life. Using the biosocial model, there are options during pain, including persistent pain, and with limitations. These are tools physical therapists use all the time.’ Stacy provided an overview as well as several specific approaches. West Los Angeles location. n=15
- 6/9/19: Interactive discussion. Several topics discussed including: our family members with related conditions; uveitis and other eye issues; One person discussed their diagnosis that came after years of digestive issues and then an acute digestive issue during their trip to Mexico which let him to look into antibiotics. Another person had a severe back injury as a child and for years all back issues were attributed to that. Some people shared what things they ‘track’ such as sleep/deep-sleep, steps, temperature, blood pressure, food intake, etc. We discussed whether we should host a meeting just for spouses, significant others, family and friends. SAA office location. n=7
- 4/14/19: The first half of the meeting was an interactive discussion on topics people had on their mind including questions regarding any consequences for long time use of TNF inhibitors and parenting while living with AS. Rheumatologist, David Yu, MD then facilitated a discussion on stress and spondylitis. Exploring people’s perception between stress and disease activity. Times in our lives when life’s stress coincided with extreme flares. Dr. Yu discussed different type of stress, how various personality traits -such as introvert/extrovert- have different inclination towards stress. In addition, we discussed methods for reducing stress. West LA location. n=26
- 3/10/19: Clinical Nutritionist, Michelle Schirra presented on diet, supplements, and nutrition. She explained what a clinical nutritionist does and how important it is for her to develop an individual plan after an assessment with a new patient. The meeting was held in Van Nuys. n=25.
- 2/10/19: Informative, interesting and supportive meeting at this West LA meeting (San Vicente & Wilshire). Each person shared their experiences over a variety of topics including decision making regarding diet, biologics, and supplements. Expectations for the future. Parenting teens with AS. Experiences regarding what Uveitis feels like and treatments. Colds and infections with and without biologics. Where else can you share to a room full of people that have the disease what it feels like to actually see your spine ankylosing on lab imaging, or share the apprehension to seeing old classmates at a reunion after becoming kyphotic & fused. Some people are completely fused from si to head, others have some fusing, some not fused at all, some are relatives of people that have SpA. n=14
- 1/13/19: 2019 is off to a wonderful start! Lively & supportive interactive discussion on a whole host of topics including chances of parents with AS having children get AS, recommendations of local rheumatologists, water exercises and other activities, experiences with medications and diet. Diverse group in terms of age, length of disease, severity of disease, gender, ancestry, and current pain levels. In addition to people that have spondylitis, we had a parent, spouse, significant other and a health care provider (nutritionist). n=14
- 12/9/18: Our first meeting in West Los Angeles – an Interactive Discussion “Roundtable meeting” held in a residential community meeting room in Playa Vista. Topics covered included Movement and Exercise – particularly Water Therapy and Pilates; the importance of correct posture to help relieve stress on the body; alternative pain management techniques, including Transcutaneous Electrical Nerve Stimulation (TENS) and Capsaicin Topical Creams (prescription compounded strength); the role of diet in disease management, and different diets that are popular with AS patients including Low Starch, Gluten Free, Dairy Free and Ayurvedic; and prescription meds (particularly biologics) vs. non-medical disease management. Thank you Kate for hosting the meeting. n=12
- 10/14/18: Allan I. Frankel, MD (GreenBridge Medical) presented (slide deck) and answered questions on cannabis as a treatment for axial spondyloarthritis. (medical marijuana). Meeting held at a local restaurant, Lulu’s. Refreshments sponsored. n=26
- 8/12/18: Rheumatologist, Glenn Ehresmann, MD Keck School of Medicine University of Southern California (USC) presenting on AS signs, symptoms and what can be done about it. Dr. Ehresmann answered all questions throughout the presentation. Meeting was held at a the Marriott and sponsored by AbbVie. n=18
- 7/8/18: Amy Muscoplat presented the topic of the ‘Power of Positivity While Living with Spondylitis’. This isn’t Pollyanna approach, but it is choosing to consciously make the decision to ‘hit the breaker switch’ to not go to a negative spiral. We don’t have the luxury of negative thoughts that create additional stress that then exacerbates the disease. Several tips were shared including ways to take your mind off of pain for a little while. positive statements, talking with positive people, practicing gratitude, etc. Resources on the topic: happiness lecturer, flow, mindfulness, YouTube videos & more.
- 6/10/18: Interactive Discussion “Roundtable meeting”. Held at the Courtyard Marriott Hotel. Discussion included how to find research studies; What physical therapy exercises would be appropriate for AS?; Dx’d at 20 & having trouble finding work; Diet; Medical cannabis; Body ph balance: Essential oils, Capsaicin compound; Yoga, Tai Chi and Qigong. SWIFT website (teens). Dr. Yu is looking for people living with AS that he can interview regarding how the process of diagnosis, or how the diagnosis itself has changed their lives. Please contact him at davidyu413@yahoo.com if this is of interest to you and to make arrangement to meet with him at your convenience. n=14.
- 4/8/18: Spondylitis Posture. Speaker: David Yu, MD Rheumatology UCLA. Poor posture is the cause of most chronic back & neck pain. Dr. Yu presented and discussed posture specifically for people living with spondylitis. With the assistance of volunteers, he showed how to evaluate our own posture and balance. Dr. Yu took questions and went over exercises to improve posture and balance. n=13
- 2/11/18: Spondylitis Relationships. Speaker: Cheryl Grenville, LMFT presentation of relationship issues discussed in literature pertaining for people living with a chronic painful diseases. Interactive group discussion on how spondylitis impacts the relationships that matter the most to us and methods of strengthening relationships including active listening. research update: NSAID use, AS and cardio issues. After refreshment break, people discussed with the group a variety of experiences and requests for living tips. medications, opioids, cannabis, reactions, types of exercise (strength, balance, cardio, range of motion), upcoming meetings and topics, etc. n=18
- 12/10/17: Financial Advisor, Adam Inlander, presented on decision making processes regarding family, home, health, leisure goals and then offered financial strategies for those goals. Living with a chronic and lifelong disease can affect all areas of our lives including, of course, financial.
- 11/4/17: San Diego patient education seminar with an international leader of spondylitis research & clinician John D. Reveille. World premeir of the latest This AS Life Live episode with guest star, Angel, sharing his experience working with Dan Reynolds and answering questions. Also physical therapist that has extensive experience working with spondylitis patients, Angelo Papachristos. The recorded seminar will be loaded to this page: http://www.spondylitis.org/Seminars-and-Webinars
- 10/8/17: Rheumatologist Robin Dore, MD presentation on ankylosing spondylitis including information on the IL-17 inhibitor, Cosentyx. A person living with AS shared her story as part of the [harma sponsored, Make My Move, program. After the program the group had a robust interactive discussion ’roundtable’ including description of the type of pain people experience at various times, such as ‘acute’ versus ‘chronic’, ‘burning’ versus ‘beat-up’, ‘location specific’ versus ‘general’ and ‘radiating’.
- 8/13/17: Dawn Hassmann, certified hypnotherapist discussed hypnotherapy and tapping, its application to central pain and answer questions. Dawn lead an extensive demonstration of tapping to enable people to practice at home. Afterward a refreshment/stretch break, the group discussed a variety of issues including a candid conversation regarding the decision making process to have children and parenting issues.
- 6/11/17: Discussion on fatigue (causes and management tips), medical marijuana, diet and AS, opioids, physical therapy and other activities (including yoga), what to do if extended family members don’t seem to understand limitations due to AS.
- 5/13/17: Patient Education Seminar in San Francisco. Three experts in spondyloarthritis presenting and fielding questions in this in-person seminar. Rheumatologist, Physical Therapist and Integrative Medicine physicians.
- 4/23/17: roundtable discussions on massage (deep tissue), tens unit, steroid shots, eye inflammation. Discussed sources to prepare for discussions with physician such as the SAA & NIAMs website; texts such as Axial Spondyloarthritis edited by Rober D. Inman and Joachim Sieper and also Ankylosing Spondylitis by Muhammad Asim Khan.
- 2/12/17: roundtable discussions that included learning more about the experiences with symptoms, diagnosis, treatment and life impact from the dozen people in the room. Once again, we were fortunate to have people with a wide variety of experiences from just diagnosed to diagnosed decades ago. Also, a wide variety of treatment approach experiences. Common experiences with symptoms were shared. Discussion regarding newly diagnosed reaction and expectations regarding career, family and quality of life going forward. Discussion regarding the decision making process for a person considering the medication options presented by their rheumatologist. Discussion regarding experiences with healthcare plans and medical professionals in the area.
- 12/11/16: The Feldenkrais Method presented by Dr. Stacy Barrows, PT, DPT, GCFP, PMA-CPT. “The Feldenkrais Method® is a form of somatic education that uses gentle movement and directed attention to improve movement and enhance human functioning. Through this Method, you can increase your ease and range of motion, improve your flexibility and coordination, and rediscover your innate capacity for graceful, efficient movement. Feldenkrais ® is taught with two modalities: verbally-coached Awareness Through Movement ® group classes or an individual “hands-on” session with a certified practitioner.”
- 10/9/16: roundtable discussions regarding: Local ankylosing spondylitis study (at Cedars); HLA-B27 (the good and bad); Inflammation blood tests (ESR & CRP); Micorbiome; Diets, tumeric and other antiflammatory supplements; NSAIDS & biologics; biomechanical and other stress affects on spondylitis; Feldenkais method of physical therapy; airplane travel with spondylitis.
- 9/11/16: Treatment for central pain for the AS patient. Researchers propose that 20% of people with AS have pain contributed by fibromyalgia. Rheumatologist David Yu, MD presented how this pain differs and treatments most effective for that type of pain, including cognitive behavior therapy, meditation and yoga.
- 7/10/16: Medical Cannabis & Spondylitis presentation by Allen I. Frankel MD “one of the world’s leading authorities on dosed cannabis medicine”. Presentation on medical marijuana followed by extended Q&A. 1/3rd of the meeting set aside for informal conversations between attendees and also some spondylitis issues addressed to the entire group. For example, one person asked if who could recommend a physician in her medical plan. Another person was recently Dx with AS and wanted to hear from others with experience taking a biologic medication and also others experience with diet and complementary treatments. Click for Dr. Frankel’s handout.
- 5/21/16: Join the Live Stream Spondylitis Education Seminar held in Dallas, TX. 10:45am Rheumatologist, John J. Cush, MD presentation followed by Question & Answer period on Medical Management of Spondylarthritis. 1:00pm Anesthesiology and Pain Medicine Specialist, Robert Overbaugh, MD presentation followed by Question & Answer period on Comprehensive Approach to Pain Management.
- 4/10/16: Discussions on triggers, medications (including the new IL-17 and biosimilar), best time to exercise, eye surgery, watching archived SAA webinars on YouTube, the new spondylitis awareness campaign using white board animation. Click here to see the awareness video.
- 3/12/16: “Ask the Spondylitis Researcher” webinar with Dr. John D. Reveille. Webinar held the same weekend as our regular meeting weekend.
- 2/ 13/16: Robust discussion regarding how to generally manage and monitor the disease.
- 1/10/16: Wide range of topics including factors that went into the decision making process for taking medications. Shared experiences with Humira. Looking back at what our first symptoms of SpA were (ie low back, not sleeping through the night, heel/foot pain). Welcomed attendee from Mexico City and discussed how Dx & treatment experiences are similar and different in Mexico. Shared resources available on SAA YouTube channel ‘SpondylitisDotOrg’ including the Los Angeles stars on the Pt Seminar video from Altadena and the MRI webinar. Developed speaker list. TY to everyone that brought refreshments!
- 12/13/15: Ben Klinger presented issues & resources related to disability insurance and long-term care. A wide variety of spondylitis issues were discussed in the second half of the meeting including career modifications, relationships, medication and disease complication experiences.
- 10/11/15: Rheumatologist, Dr. Adam Kreitenberg provided a ‘tour of spondylitis/spondyloarthropothies through pictures’ including how spondylitis is diagnosed, treated and the associated complications. All questions from the group were answered. After the presentation, we discussed various living with spondylitis topics including how to find a new rheumatologist with spondylitis experience.
- 9/13/15: Discussed all topics raised by attendees including: how to find a local doc without insurance, prolo tx, iritis, muscular tightness, marijuana, Disney 1/2 marathon fundraiser, depression, insurance, naturapath, diet, acupuncturist, spine disc surgery & infection.
- 8/9/15: Licensed acupuncturist, Cindy Antoun, L.Ac. presented ‘acupuncture and spondyloarthritis’ including the risk, benefits, science and art of practicing acupuncture. Ms. Antoun holds a Master’s Degree in Acupuncture and Oriental Medicine and owns a local private practice.
- 6/14/15: Dr. David Yu provided an information packed and thought provoking presentation on Central Pain, Fibromyalgia and Spondyloarthritis.
- 5/10/15: Dr. Boris Ratiner presented Psoriatic Arthritis and Spondyloarthritis. Dr. Ratiner also provided insight into his decision to enter the specialty of rheumatology and running a private rheumatology practice.
- 4/12/15: Wide variety of topics including: nerve pain in the legs; whether having more than one generation of family with AS increased the odds for the next generation, and whether it makes sense to have them tested for the HLAB27 gene; diets; uses for Voltaren gel; the importance of awareness activities; and imaging in early diagnosis.
- 3/21/15: Spondylitis Educational Seminar in Altadena with 3 speakers: Rheumatologist David Hallegua, Physical Therapist Sturdy McKee and Ophthalmologist Olivia Lee. Recap, and video archive of this seminar are available on SAA’s homepage & YouTube channel. click here for quick link to Dr. Hallegua’s presentation and Q&A.
- 2/8/15: Speaker Robert Overbaugh M.D. presented new therapies and multidisciplinary approach in pain management followed by an extensive question and answer session. Doctor Overbaugh is a pain physician and fellow spondylitis patient.
- 1/11/15: Speaker, Rhoyge Traylor discussed how insurance companies, pharmacies & government policies affect spondylitis. The critical role of the patient advocate in shaping policy. How to get involved including SAA’s alerts.
- 12/14/14: Pre-meeting, small group “Chat with an Expert” with Dr. David Yu. Also pre-meeting, private and semi private yoga practice with Richard Howard. Meeting discussions included endometriosis, benign tumors, pregnancy/new borns and AS. Much of the meeting compared experiences and ages from early symptoms in childhood, through first major flare, to diagnosis. We also looked at family members with related issues, HLA-B27, length of time without symptoms.
- 11/9/14: Speaker on Long Term Care Health Insurance & Spondyloarthritis followed by group discussion on various spondylitis topics. Pre meeting private yoga lesson.
- 10/12/14: Round Table Discussions included: Building healthy habits including exercise and diet. Sharing wins in improvement and progress. What causes flare-ups? What supplements are people taking
- 9/14/14: Alternatives to TNFi’s & NSAIDS, Group Exercise, diet, psychological approaches. Pre-meeting ‘Chat with an Expert’ by Dr. Yu. Pre meeting private yoga lesson.
- 8/14/14: Pre-meeting yoga practice. Invited Speaker, renowned Rheumatologist Dr. David Yu: “Chat with an Expert”, small groups (2-3 people) had a chance to discuss their spondylitis related issues with an expert. Round table discussion: What can you do when biologics and NSAIDS are not enough?
- 7/13/14: Round Table Discussion included tips when switching from one TNFi to another. The toll Spondylitis plays takes on relationships. Finding the will and ability to exercising when in pain.
- 6/8/14: Invited Speaker: Tai Venuti, MPH. Tai presented on SSDI, SSI and Spondyloarthritis. (See ‘Notes from Past Meetings’ below for the power point presentation). Also round table discussion included: experiences with Simponi & Humira, Fundraisers such as Walk-A-Thons & Comedy Night, the ‘Catch 22’ of not feeling well enough to exercise, experiences with spouses expectations and support.
- 5/4/14: Chronic pain & fatigue effects on maintaining friends and social networks and avoiding isolation; herbs; sympathetic nervous system, vitamins; medical marijuana; TNFi injection devices; weight lifting; restorative (yin) yoga.
- 4/13/14: Invited Speaker: Howard Wax MA, MED, LMFT. Howard presented on the Psychological Immune System. Video of work done at UCLA on brain imaging activity, pain levels, and visualization techniques. Discussed ways to change the dialogue surrounding goals and pain.
- 3/9/14: Round Table Discussion included ‘Tips for the newly diagnosed’, ‘911: Emergency First Responders & Ankylosing Spondylitis (AS)”, diet, exercise, medications, hip surgery, hand pain.
- 2/9/14: Invited Speaker: Eleni Tsikrikas, Clinical Ayurvedic Specialist and PanchaKarma Specialist. Topic: The Ayurvedic Medicine Approach to Spondylitis. (Ayurvedic Medicine is a system of traditional medicine native to the Indian subcontinent.)
- 1/12/14: Invited Guest: A.S. Clinical Research Coordinator, Kristina. Kristina presented on tools used to measure range of motion. The group discussed tips to reduce injection site reactions, and shared personal journeys from symptoms to diagnosis, to treatments, to today.
- 12/8/13: The new TNFi, local rheumatologist recommendations, isolation, diet, inversion tables, exercise and alternative care.
- 11/10/13: ‘Round Table Discussion’ the group fielded all the issues brought up by attendees.
- 10/13/13: Dr. Yu’s presentation: ‘How To Assess & Control Cardiovascular Risks’. Jessica Wang’s Interactive presentation: ‘Exercises for stability and core strength’.
- 9/8/2013: ‘Round Table Discussion’ the group fielded all the issues brought up by attendees.
- 8/14/13: Discussions included: Medications overview, tips for switching TNFi, diet theories, traveling with AS, impressions and recollections from the SPARTAN Annual Conference (Spondylitis Research And Treatment Network), personal stories & experiences, etc
- 7/14/13: ‘Round Table Discussion’ including diet, microbiome, exercise, supplements, fatigue, TNFs, personal stories, etc.
- 6/9/13: Speaker: Anthony Elliot, Insurance Issues including Affordable Health Care & the California Exchange System.
- 5/19/13: Speaker: Tiffany Fraser certified Anusara Yoga Instructor. (this meeting is the 3rd Sunday of the month, so our meeting would not conflict with Mother’s Day).
- 4/14/13: Round Table Discussion including planning a life around AS. Balancing relationships, school, work even trips without knowing when a flare will hit. Spoon theory. Personal AS stories.
- 3/10/13: Speaker: Tiffany Westrich (IAAM), autoimmune diseases.
- 2/10/13: Basic SpA Management
- 1/13/13: Speaker: Dr. Weisman, AS clinical Dx, Treatments.
- 12/2012: Video: Dr. Weisman part 1 overview of SpA
- 11/2012: First Meeting – Q&A, setup admin
Videos of Jan 2020 Dr. Cooper from the UCLA Cannabis Research Initiative:
6645 – LA Support Group Presentation – Cannabis: Why do research regulations exist? – https://youtu.be/sILaUHCsEJo
6650 – LA Support Group Presentation – Cannabis: Annual Cannabis Research Symposium – https://youtu.be/QCjxiq1ZelsHal11
