Ankylosing Spondylitis
200 Members
This online group serves the members of our arthritis community who are living with Ankylosing Spondylitis and related conditions from across the country. We invite those who are looking for support, education, robust programming, expert speakers, and connection to join us and meet others who understand.
Live Yes! Connect Groups offer connections, education, and empowerment. Adults living with arthritis from across the country come together online for professional- and volunteer-led sessions on topics, as well as fun group activities.
We offer a place of understanding and encouragement for both people living with arthritis and their loved ones. Group participants become self-advocates, develop self-management skills, and learn how to not just survive life with arthritis but to thrive.
Upcoming Events
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Wednesday, July 23rd, 20257:00 PM EDT1h 30m
-
Virtual Event
- 15 people attending
Join us for an engaging conversation discussing the AS journey as a patient. We welcome all to share experiences, lessons, tips and resources.
-
Wednesday, July 23rd, 20257:00 PM ET1h 30m
-
Virtual Event
- 10 people attending
Please join the Ankylosing Spondylitis (AS) Live! Now Connect Group on Wednesday, 7/23/25 from 7:00-8:30 PM ET, 6:00-7:30 PM CT, 5:00-6:30 PM MT, 4:00–5:30 PM PT.
This session will include a presentation on the "Overview of AS." Participants will have the chance to be a part of an interactive discussion on the "Journey of a Patient".
After our presentation, there will be time to connect with others. Friends, family, and care partners are always welcome to join meetings.
We respect privacy and confidentiality and do not record our online meetings.
Registration is required to receive the Zoom link to participate via video or phone. Being on video is not required, nor is having a Zoom account. A confirmation email with the Zoom link will be sent upon registration. If you do not receive the registration confirmation, please check your spam folder. Please plan to log in a few minutes early.
The information presented is for informational and educational purposes only. This information should not be construed as personal medical advice. Because each person’s health needs are different, a physician should be consulted before acting on any information provided during this meeting.
We welcome all to share experiences, lessons, tips and resources and look forward to seeing you soon!
- Event List
-
Wednesday, July 23rd, 20257:00 PM EDT1h 30m
-
Virtual Event
- 15 people attending
Join us for an engaging conversation discussing the AS journey as a patient. We welcome all to share experiences, lessons, tips and resources.
-
Wednesday, July 23rd, 20257:00 PM ET1h 30m
-
Virtual Event
- 10 people attending
Please join the Ankylosing Spondylitis (AS) Live! Now Connect Group on Wednesday, 7/23/25 from 7:00-8:30 PM ET, 6:00-7:30 PM CT, 5:00-6:30 PM MT, 4:00–5:30 PM PT.
This session will include a presentation on the "Overview of AS." Participants will have the chance to be a part of an interactive discussion on the "Journey of a Patient".
After our presentation, there will be time to connect with others. Friends, family, and care partners are always welcome to join meetings.
We respect privacy and confidentiality and do not record our online meetings.
Registration is required to receive the Zoom link to participate via video or phone. Being on video is not required, nor is having a Zoom account. A confirmation email with the Zoom link will be sent upon registration. If you do not receive the registration confirmation, please check your spam folder. Please plan to log in a few minutes early.
The information presented is for informational and educational purposes only. This information should not be construed as personal medical advice. Because each person’s health needs are different, a physician should be consulted before acting on any information provided during this meeting.
We welcome all to share experiences, lessons, tips and resources and look forward to seeing you soon!
Facilitators [1]
Members [200]
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Osteoarthritis Connect Group: "Managing Osteoarthritis & Chronic Pain with Integrative and Lifestyle Medicine" with Zenobia Tayeb MD
Join us on July 18,2025 at 3pm ET - 12pm PT as we will have Zenobia Tayeb, MD, MPH, MEd, Dip ABLM- a Cleveland Clinic - Staff Physician with the Center for Integrative and Lifestyle Medicine in the Department of Wellness and Preventive Medicine discussing "Managing osteoarthritis and chronic pain with integrative and lifestyle medicine"
You DO NOT want to miss this presentation and there will be a Q & A after the presentation.
Register- Events
https://connectgroups.arthritis.org/groups/osteoarthritis
Views and opinions expressed by the sender are those of the sender and do not necessarily reflect the views of the Arthritis Foundation.
ANNOUNCEMENT!!!!
Ankylosing Spondylitis (AS) Virtual Connect Group
Overview of AS & the Patient Journey
Please join the Ankylosing Spondylitis (AS) Live! Now Connect Group on Wednesday, 7/23/25 from 7:00-8:30 PM ET, 6:00-7:30 PM CT, 5:00-6:30 PM MT, 4:00–5:30 PM PT.
This session will include a presentation on the "Overview of AS." Participants will have the chance to be a part of an interactive discussion on the "Journey of a Patient".
Learn more and sign up at:
https://connectgroups.arthritis.org/events/event-detail?eventid=235990
After our presentation, there will be time to connect with others. Friends, Family, and Care Partners are always welcome to join meetings.
We respect privacy and confidentiality and do not record our online meetings.
Registration is required to receive the Zoom link to participate via video or phone. Being on video is not required, nor is having a Zoom account. A confirmation email with the Zoom link will be sent upon registration. If you do not receive the registration confirmation, please check your spam folder. Please plan to log in a few minutes early.
The information presented is for informational and educational purposes only. This information should not be construed as personal medical advice. Because each person’s health needs are different, a physician should be consulted before acting on any information provided during this meeting.
We welcome all to share experiences, lessons, tips and resources and look forward to seeing you soon!
I joined this group a while ago but the interface is clunky and I keep forgetting to come in here! My mom and my poppop both had Ankylosing Spondylosis diagnoses, but I have nonradiographic seronegative spondylarthropathy. I have been symptomatic since may late teens but it took 6 rheumatologists and 15 years to get one who diagnosed me and put me on Humira, which basically saved my life (almost killed my mom, though, so your mileage may vary). I'm now 45 years old and still feeling better now than I did when I was 25, but am now developing more issues with low back, neck, and shoulder pain that I'm needing new tools to manage. Might just need to up the Celebrex for starters. But, I've been in the struggle for almost 30 years so happy to contribute what I can, and learn what I can. I'll be honest, I used to be a librarian and I'm very good at research, but I've never really researched my condition much so I can always learn more.
New to this group. I was diagnosed a few months ago with undifferentiated AS—family doesn't really seem to understand the struggles, just looking to make connections and support each other.
Hello,
I am just joining the group. I was recently diagnosted with Ankylosing Spondylitis by my GP after, xray, HLA testing and multiple round of failed PT to resolved back pain; I have yet to meet with a rheumatologist. I also have the distinct pleasure of recently discovering I also have scoliosis. I'll be joining the 6/12 Newly Diagnosed Connect Group: Medical Management of Arthritis session and hope to learn more information there.
Hi Sam, and welcome to the group! I'm a co-facilitator of the Newly Diagnosed Connect Group, and I am temporarily helping Carla get this group up and running after a long hiatus. I'm happy to hear that you'll be joining the Newly Diagnosed Connect Group meeting next week, and we hope to have an event planned for this group in July, so stay tuned!
I am looking to share experience with people with reactive arthritis. This came on for me in the last few months and I am taking oral methyllprednisollne after a previous steroid treatment. I would like to have perspective from anyone willing to give it.
Hi Sally,
Thank you for opening up this topic to our group. To learn more about reactive arthritis, you can click on this link Reactive Arthritis. Have the steroid treatments been effective for you, Sally? Is your rheumatologist or other specialist following you closely to determine treatment progress? It is important that there is a plan to transition off of the steroids as long-term use has been associated with a multitude of risks? See article: Corticosteroids
Has anyone else in our group experienced reactive arthritis? If so, feel free to provide any information you feel comfortable with!
Best,
Carla
Many years suffering and finally got the right diagnostic .
This group's posts timeline seems a bit confusing and many do not get replies.
Does anyone know if there is a modern group chat application with people with AS? (telegram, discord, whatsapp, etc )
Hello Joao and welcome to the group! I know how overwhelming it can be, and I am here to support you. This is a great place to share what you're experiencing with other people who are going through it too. You can also ask questions and I will do my best to answer.
Congrats on finally receiving the right diagnosis! I know the feeling all too well...it took me 5-6 years of suffering to get the correct diagnosis. The whole process of being "diagnosed" or given the correct label is so frustrating and often lonely. I don't know how others feel on the topic of diagnosis but I felt so relieved to finally have something to "call" this awful disease, although it didn't necessarily change the treatment course!!
As for the confusing timeline and lack of replies, you are correct...this was due to the fact that there was no facilitator for this specific Connect Group for almost 1 year. I just hopped on board this week so I am slowly but surely trying to catch up on the Discussion Board, as well as organizing our AS Live! Connect Group meeting!
Also, feel free to join the "Newly Diagnosed" Live!Yes Connect Group at https://connectgroups.arthritis.org/groups/national-newly-diagnosed. That group meets via Zoom on the second Thursday each month, and the next meeting is on 6/12/25, where they'll be discussing medical management of arthritis, including finding the right medication(s). If you need help before then, the Arthritis Foundation offers one-on-one support from trained staff through arthritis.org/helpline. If you need to leave a message, staff will usually respond within two business days. You can call toll-free at 800-283-7800.
Best,
Carla
Hi, I was recently diagnosed with AS. I've been managing fine but it recently has started effecting my hands which has put a strain both on my work and personal life. Does anyone have any suggestions for things that may help?
Hi. Is this an active group?
Thank you Yehudis! Hopefully you were able to get the support you needed when you reached out the 1st time...if you ever need personal assistance, the Arthritis Foundation offers one-on-one support from trained staff through arthritis.org/helpline. If you need to leave a message, staff will usually respond within two business days. Call toll-free at 800-283-7800.
I'm happy to hear you found the Spondylitis Association of America (SAA)...they are a fabulous resource that I often utilize! The Arthritis Foundation (AF) is part of the NIAMS Coalition (National Institute of Arthritis and Musculoskeletal and Skin Disease) (https://www.niams.nih.gov/about/niams-coalition). The AF joins/partners with other professional and voluntary organizations to raise awareness about NIAMS research into the basic understanding, causes, incidence, treatment, and prevention of diseases of the bones, joints, muscles, and skin...and SAA is one of the recognized partners with AF...so you are encouraged to any and all resources from this coalition!!
What support offered by the SAA have you found most useful/helpful?
Hi Carla. That's nice that you hopped on as the facilitator. At the time of messaging I was desperate for support. I have since joined the spondylitis association of America support groups and have made amazing connections. I don't know if I should be on 2 groups but I guess we can see how this plays out!
Hello Yehudis! Sincerest apologies for the delay in responding and lack of activity in this group...this specific group has been without a facilitator for almost 1 year. With that being said, my name is Carla and I am excited to introduce myself as the new facilitator for the LiveYes! Connect AS group!!! We will be planning upcoming events for this group and I would love any input you have regarding topics, ideas, etc. I just hopped on board this week so I am slowly but surely trying to catch up on the Discussion Board, as well as organizing our AS Live! Connect Group meeting!
Best,
Carla
Hi,
I was just diagnosed with Ankylosing Spondylitis in May 2024 although I suspect I have it for decades. Has anyone else had this kind of experience? It escalated when about when COVID hit. The doctor said I had to stop taking NSAIDS. Then my symptoms escalated dramatically.
Claire S
Why stop NSAIDS?
Hi all,
I'm new to this group and am hopeful for some support and knowledge from others with AS. I am currently going through several trials for treatment planning currently but nothing seems to be helping my pelvic and leg pain/weakness. I have tried RFA, several physical therapies (to include pelvic floor), and various medications (using only one medication for pain management currently). My hope is to not have to get on a new medication so early in my life (I'm mid-20s). Has anyone else had intense leg and pelvic pain and weakness? And what treatment options or testing did you do to try to find other treatment options rather than new medication? I appreciate all insight and support!
Christina
Yes, what actually helps met is icing my low back and mindful meditation techniques. It doesn't make sense but I think the pressure from the inflammation in my lower spinal nerves presses causing referred pain. So I think it reduces the swelling calming down the nerve. Good luck!
Hello! I was just diagnosed with a couple of weeks ago and don't know anyone that has it. What helped you accept your diagnosis?
My name is Andre, you love everyone in the group, I have ankylosing spondylitis - is there a cure with stem cells?
Good morning,
I am newly diagnosed with AS after a year of testing and progression of the disease. If anyone has any words of wisdom to share please do. I am still working on accepting and adjusting.
Hi Andre,
Great question! While promising, stem cell therapy for AS is not yet an approved treatment. You can read more from the Arthritis Foundation in this article: Considerations for Stem Cell Interventions
For more info on the latest scientific information on arthritis, you can click on this link: Science and Arthritis
Carla
Can we communicate thru text or calls
Me too! It's hard. How do we do it?
I too have AS. Diagnosed March 2024. Taking hydroxychloroquine and methotrexate. Not helping a lot yet. I keep hoping eventually for the right meds. I flare 5 out of 7 days lately with pain different places and horrible flu like symptoms. I hope to share with others that understand and would like to know if remission is likely.
Actually for me I am just happy to have an explanation. I had to stop taking NSAIDS about 4 years ago so I ended up having to take opiates without knowing what was wrong. I slept a lot and it messed up my thinking. It was awful. Now I finally have a Rheumatologist because my pain doctor and I finally figured out it had to be more than structural problems in my spine. Now I have another type of meds specifically for A.S. I am much improved.
Thank you Jed. Next step we are changing my medication this month and I'm trying to motivate myself to get active!
My name is Andre, you love everyone in the group, I have ankylosing spondylitis - is there a cure with stem cells?
Lauren,
Welcome to the family! We deal with a lot, but our community is amazing!
Don't let the diagnosis get you down. You got diagnosed at a great time with all the possible treatment options we have to help us stay mobile and slow disease progression.
There are so many people with AS who live very active lives. It affects everyone differently, so trust me, AS is not the end lof the road.
Feel free to reach out any time you have a question or need someone to talk to.
We are here to help!
Welcome to the family!
Jed (Group Facilitator)