Ankylosing Spondylitis

My Ankylosing Spondylitis Story

My Axial Spondyloarthritis / Ankylosing Spondylitis and Psoriatic Arthritis story begins in 2009 but the background leading up to my first diagnosis started long before that. It’s my 16 year AxSpA anniversary! I’ve lived with this terrible disease for 16 years. I update this page every February.

Often I still can’t believe this has happened to me. More often than not, I need my wheelchair to do basic day to day things like collecting my mail and getting groceries. AxSpA has stolen my ability to stand tall, or stand without discomfort. It also impacts how I sit. Chairs are a nightmare for me without pillows and cushioning.

Before I dive into my story, I want to show you this description of a young person with axSpA from The Rheumatologist. The description is what a rheumatologist saw when he met this patient for the first time.

A Stiff Man: A Case Study in Ankylosing Spondylitis

First Appearances

I watched the old man, his back painfully bent, shuffle toward the scale. A blocky rigidity draped over him. His feet seemed stuck to the floor. His head hung heavily over his chest. Observing him from the end of the hallway, instead of a face, I saw only a mound of shaggy, matted hair.

Pausing in front of the scale, he leaned his walking stick against an adjacent chair. The stick was more or less straight, the bark stripped, the underlying wood sanded to a marbled brown. As he lifted a foot to step onto the scale, the medical assistant gently held the crook of an elbow. His loose jeans drooped over a pair of bony hips. Beneath a gory Zombie T-shirt (Zombies Are People Too!!) his bony shoulder blades and muscle-wasted arms suggested, what? Cancer? Malnutrition?

“A pillow?” he asked. He shifted slightly and grimaced. “Do you have a pillow you can put under my butt? Maybe another for my back? Chairs and I don’t get along so well.”

I reached into a lower cabinet and grabbed two pillows. Joshua N. half-stood, and I slid one pillow beneath him and placed the other low against the back rest. With half-closed eyes, he exhaled slowly and settled into the chair.

He’s 18 years old and he has AS.

My health journey in Taiwan began in 2007.

It’s obvious to me now that I had arthritis symptoms in Canada at age 24. These symptoms were routinely dismissed by doctors who thought young people don’t get arthritis. I’m 50 now, which means I’ve been living with axSpA for half my adult life. Sometimes I look back at my journals and what has happened and I still feel disbelief over what has happened.

Back in 2001, I was working at a jewelry store in Ottawa, Canada. I was on my feet all day, and I suffered low back pain, problems with my shoulders, mysterious joint swelling, constant infections, and general malaise. Like every young person that age, I led an active social life. But I always felt that there was something wrong.

After all, I didn’t look sick. I just felt awful all the time.

What is Axial Spondyloarthritis AKA Ankylosing Spondylitis?

Ankylosing spondylitis is a form of chronic inflammation of the spine and the sacroiliac joints. Chronic inflammation in these areas causes pain and stiffness in and around the spine… AS is also a systemic disease. It can affect other tissues throughout the body. Ankylosing Spondylitis is from Medicine Net

Symptoms of axSpA vary greatly among patients, especially between men and women. Many patients go years without a diagnosis. The average amount of time for women to receive a diagnosis was more than 10 years when I started writing about it 16 years ago.

I had classic symptoms of axSpA for over a decade before I got my diagnosis. No one should ever have to wait that long.

The gap in the delay to diagnosis has shortened slightly in recent years.

For those of you who suspect something is wrong, and believe me, you will know something is wrong if you have axSpA, I recommend visiting the Spondylitis Association of America. They offer a helpful assessment video on how to assess your chronic back pain.

The SAA is the reason why I was able to get help so quickly in Taiwan.

My Ankylosing Spondylitis Story 

We first realized that there was something really wrong in 2008. All year, I had been experiencing stabbing pain in my calves and legs. I attributed it to working out and wearing heels, but was shocked at how bad the pain was. My knees swelled up to the size of softballs regularly. My back was always on fire. I was waking up in tremendous pain. The pain is non stop.

It didn’t matter whether I was sitting, lying down or standing, the pain was intolerable. I cried every night going to bed. Then I’d cry again when I woke up.

It’s 2025. I’m still crying when I wake up in the morning. The pain is unreal. It takes hours to get moving in the mornings.

We got married in December 2008. I got my inflammatory arthritis diagnosis two months later on February 12 2009.

I woke up one dreary morning in early February with swollen knees and matchstick legs. My legs felt like they were going to snap in half. I couldn’t hold my own body weight and my back felt like a corkscrew. I literally could not hold myself up.

Every athlete knows RICE protocol, so that is what I did because I thought I had, once again, hurt myself at the gym.

Rest, Ice, Compression, Elevate.

I spent two days doing that and my knees kept swelling. 

Two days later I developed a fever. By Monday, it was so high, my husband decided we were heading to ER. We went to Taiwan Adventist Hospital. I remember sitting in a wheelchair in the ER and every position was excruciating. It felt like if I didn’t move, I was going to die. I’ve never felt pain that bad before.

I’ve had rheumatic fever too many times to count now.

They aspirated my knees and then we waited. I could not stand for a week after that. Little did I know that I had many more months and years of the same thing heading for me. Each time I’ve come out of remission, I’ve been bed bound and unable to stand or walk until I get the inflammation under control.

Adventist Hospital suspected I had something called Ankylosing Spondylitis, but they didn’t have anyone there who could help me. They referred me to a rheumatologist at National Taiwan University Hospital (NTUH).

That night I called my mom and she said, “Thank god it’s not Rheumatoid Arthritis!“

Little did we know what was coming for me.

Inflammation takes over my body when my autoimmune disease is active.

AxSpA doesn’t just show up in my joints. It hits my eyes, ears, throat, skin, and organs. There is nothing that this disease leaves untouched when it’s active, which is why it is so important that we work quickly to find a medication that will slow it down for a while.

The most time I’ve ever gotten from a biologic is just under four years. I’ve had biologics stop working within a matter of months. I’ve also had biologics that didn’t work at all.

AS Treatments in 2009 in Taiwan

Can you imagine putting your feet on the floor after you wake up and feeling like you’re standing on glass? Can you imagine feeling like you’re walking on glass all day?

That’s what I was experiencing.

We moved to NTUH where I spent the next three years being treated. My first rheumatologist started me on Plaquenil first and I reacted to it.

We tried sulfasalazine for inflammation, but my rheumatologist warned me it might be weeks or months before it started working. I spent the rest of 2009 hobbling around on a cane and keeping my knees wrapped. The inflammation never went away completely until I started biologics in 2018.

As it turns out, I’m allergic to a lot of arthritis medications.

We spent our honeymoon in Singapore four months after my diagnosis. I used my cane and a wheelchair for most of that trip. The pressure on my lower back was horrible. At times, I’d wake up and couldn’t lift my arm or turn my neck. I still have days like that!

My legs often feel like someone is stabbing them with a knife. Then they go numb. Then my feet go numb. It felt like I was being slowly crushed. Now I’ve learned that this is what AS does. It’s insidious and never-ending!

Writing this does not do it justice. It felt like I had a heavy weight pulling me down and inward from my chest. If you can imagine a spine crumbling and being pulled forward, that’s me!

Years later when I saw news articles of AS patients in a stooped position, it made sense.

Since 2009, I’ve tried:

1. Plaquenil (allergic to it)
2. Methotrexate DMARD (allergic to it)
3. Corticosteroid injections in my joints
4. Celebrex (NSAID)
5. Paracetamol (NSAID)
6. Naproxen (NSAID)
7. Enbrel Biologic (severe allergies to anti-TNF meds)
8. Humira Biologic (severe allergies to anti-TNF meds)
9. Simponi Biologic (severe allergies to anti-TNF meds)
10. Taltz (IL17)
11. Cosentyx (IL17)
12. Olumiant (JAKi)
13. Sulfasalazine DMARD – primary med since 2009
14. Rinvoq (JAKi) – primary med since 2024
15. Tramadol – primary med since 2009

Biologics are life-changing when they work!

It took nine years to access biologics. I still can’t believe I had to wait that long to get access to biologics!

Enbrel changed my life, but when it stopped working, my disease sucker punched me once again and knocked me out.

My biologic stopped working in 2021 again. I’ve been through nine biologics since November 2021. Being on so many immunosuppressants changed my body. I look at photos of myself from 2022 to 2024 and barely recognize myself.

Thankfully, my rheumatologist seems to have found the right combination for me in 2025. Rinvoq has given me some of my life back. It is also working at reducing the body-wide swelling and edema that I have.

It amazes me to think of the excuses I was able to make for my illness. I felt like crap for so long and I allowed experts to convince me that the pain was normal! Now I know that most doctors aren’t educated on what I have.

In 2024, my rheumy encouraged me to keep writing and sharing. Hearing from him that he has learned from my story was also empowering as I know he’s in my corner.

Your doctor-patient relationship should be reciprocal. Your doctor is the expert in rheumatology. YOU are the expert at living in your body.

I’m a D2T patient.

Sadly, I am one of those arthritis patients that goes through medications fast. Thus my case is exceptionally complex. My arthritis was categorized as D2T in November 2024.

“Your arthritis is difficult to treat, Carrie. It also appears to be med resistant.”

How does someone long to hear those words? They’re terrible words. But to me, they were golden because it meant a medical professional finally understood how bad my arthritis is.

My labs were showing that I needed to be on anti-TNF blockers by 2015, but my health insurance in Taiwan didn’t cover it back then. It took another four years to find a doctor to prescribe this type of medication. I decided to pay for it out of pocket because I couldn’t move and knew I couldn’t keep living the way I was living.

I started Enbrel in November 2018 and spent over $1,200 a month for my medications.

Since 2022, I’ve blown through nine biologics/immunosuppressant medications to find something to slow inflammation. I also lost my mobility completely from having so much inflammation in my joints.

After My Ankylosing Spondylitis Diagnosis

Since receiving my AS diagnosis in 2009, I’ve slowly stopped doing everything I loved.

My career in music is gone. I stopped dancing, running, and working out. I was a regular at the gym and by 2014 I stopped going completely. We had to stop traveling and backpacking. Eventually I became too sick to hold down a full time job. Luckily, I work from home, otherwise I wouldn’t be working at all.

Today, I’m mostly housebound. While I was waiting for doctors to figure out which med was going to work best for me, I lost my life.

In April 2024, I decided to get a power wheelchair and it has been life-changing. I can now get my mail and packages. Zipping over to our local grocery store to get food and not having to carry it back or use my limited step count has been incredible. I’m so glad I made the decision to get a power wheelchair.

20 years untreated can do a lot of damage that is irreversible, which is why it’s so important we close the gap in the delay to diagnosis.

While the Taiwan government still doesn’t see me as disabled yet, my disability paperwork was filed on March 8, 2025.

Taiwan has strict criteria for qualifying for biologic coverage

That battle has continued to this day. Taiwan NIH does NOT recognize Axial Spondyloarthritis as a diagnosis. It only recognizes Ankylosing Spondylitis. This leaves thousands of patients out in the cold who need a diagnosis and access to medications that slows disease progression before they become disabled.

You can read more about Taiwan’s outdated criteria for Ankylosing Spondylitis and its non-recognition of AxSpA here. I’ve watched this page add slow updates since 2009. In short, Taiwan’s Rheumatology Association acknowledges the change, but they cannot influence our government healthcare system. Taiwan NIH does not acknowledge axSpA.

I finally qualified for health coverage on Dec 8, 2022 after spending 2022 in bed from another disabling flare.

Throughout all the waiting, no one ever told me that I should expect other autoimmune diagnoses. Year after year, new diagnoses have rolled in: Psoriatic arthritis, fibromyalgia, MECFS, APS, IBS, and chronic migraine, and more.

Today there is no part of my body that isn’t affected by severe health issues.

The Race To Access Biologics and Find One That Works

Enbrel changed my life when I started it in November 2018. I had close to four years with it. In retrospect, I had four really good years with it. When it stopped working, life stopped for me. I moved to my second biologic in November 2021 and had high hopes for Humira.

But nope. That didn’t work out for me. I learned five months after starting it (March 8, 2022) that my body developed antibodies to it quickly. I don’t understand why my doctor in Taipei put me on this med as my new rheumy said it’s too similar to Enbrel. All I know is I couldn’t walk or stand for most of 2022 and I couldn’t bend my arms or bend over. AxSpA hit every single major joint in 2022.

I started my third biologic, Cosentyx, on April 2, 2022. For a while it seemed to be working, but then I relapsed in October 2022.

2022 was the year of the Great Inflammatory Arthritis Flare

2023 ended up being The Aftermath Year. Taltz stopped working. The exquisite agony of life with inflammatory arthritis has come back with a vengeance, rendering me instantly disabled.

2024 was the Year of A Thousand Cuts. I learned that I was allergic to anti TNF medications and we had to stop the class of medications completely because of life-threatening allergies.

2024 brought five more biologics (Humira, Enbrel and Simponi) and two JAKi (Olumiant and Rinvoq.) Last year also results in many more months of being housebound while trying to get inflammation under control.

2025 at NTUH, which was the hospital I started at in 2009

My new rheumatologist has come through for me time and time again. I like him as much as my first rheumy in Taiwan and feel very lucky to be his patient. He is the only other doctor that has listened to me, explained things thoroughly and patiently, and above all – he believes me and understands how hard my life is.

You have no idea how important this is as a patient until you’ve been with a bunch of doctors who minimized your health traumas.

In December 2022, he won a landslide petition for medication coverage for me in Taiwan. It is unheard of for a patient like me in Taiwan, who does not have the genetic marker for AxSpA, to have this coverage.

I don’t know how he did given how strict NHI regulations are for patients like me, but he made a miracle happen. Hopefully my case paves the way for other patients in need.

My doctor wants to try biologic swapping / biologic switching

When Rinvoq stops working, and we know that it will at some point, my doctor will start his switching/swapping plan.

This type of treatment involves taking one type of immunosuppressants for six months and then switching to another one.

The idea of switching ensures that my body does not have time to make antibodies to the medications that target inflammation pathways.

If anyone ever doubts what life is like with arthritis and wonders if medications actually work, you only need to consider what your life is like WITHOUT these life-changing medications to realize that they make all the difference in the world in being able to get out of bed and do basic chores and not being able to do anything at all. (Yup, I made it into a t-shirt and I love wearing this shirt.)

Coming out of remission from axSpA creates a perfect storm for fibromyalgia and MECFS to start wreaking havoc.

I went to war last year and I’m still not sure who is winning.

Sometimes it’s clear arthritis is winning the battle. And sometimes it feels like I’m a few steps ahead with AS hot on my tail. What is certain is that AS always catches up with me and puts me through the ringer.

Living with axSpA is a marathon. I’m pacing myself and barely keep my edge on it, but I can’t take my foot off the gas. I must keep going.

I hope my story helps other patients here and that no one has to suffer the way I’ve suffered.

I’ve learned to pace for pain management. Pacing is key and it will never change. I’m trying so hard to maintain 30 minutes on my feet each day. I’ve never been able to get past this goal since 2018, but I haven’t lost it yet. I know I must keep moving. Keep on going. I will bend. I will not break!

My new rheumatologist keeps reminding me to hang on tight. There are always better medications on the horizon until we find a cure.

Why is Ankylosing Spondylitis now called Axial Spondyloarthritis? 

Axial Spondyloarthritis IS Ankylosing Spondylitis.

“In clinical medicine, use of the term axSpA should be preferred over AS because the word “ankylosing” has a negative prognostic connotation for patients as that degree of structural damage may take a long time to develop or may not occur at all.”

Source: National Library of Medicine, July 2019 Axial Spondyloarthritis: A Better Name for an Old Disease: A Step Towards Uniform Reporting, Muhammad A. Khan and Sjef van der Linden

Dr. Kahn’s work has been covered extensively across this site. You can find further info at the bottom of this page in the health summit articles and event recaps that I’ve written for the SAA and ACR.

Want to keep learning about AS and axSpA?

Spending years in bed has allowed me to produce a lot of content for my readers and there is more than enough listed below to write a book on it! I’ve organized it as best as I can and I hope you found my AS story interesting and helpful!

RESOURCE ARTICLES FOR FURTHER READING

Taiwan AS criteria – Taiwan Rheumatology Association consensus recommendations for the management of axial spondyloarthritis

My Articles About Ankylosing Spondylitis and AxSpA

1. Ankylosing Spondylitis Main Page – My Story – Diagnosis Feb 12 2009 – Feb 2024
2. Arthritis Leg Pain and Fibromyalgia Leg Pain: What’s The Difference? 2025
3. Visual Evidence of Inflammatory Arthritis: When The Invisible Becomes Visible (2024)
4. Why Is It So Hard for Patients to Change Meds? (2024)
5. Chronic Illness Realness VS Masking What’s Really Happening (2023)
6. World AS Day 2023: How Life Lessons Prepare Us For Life With Arthritis (2023)
7. The Great Inflammatory Arthritis Flare of 2022 (2023)
8. AxSpa and Ankylosing Spondylitis Flares – What To Know (2022)
9. Another Disabling Flare, Another Year in Bed (2022)
10. What It Feels Like To Win Health Coverage in Taiwan (2022)
11. 8 Ways Chronic Pain Changes You (2022)
12. 70 Facts About My Invisible Illness You Might Not Know
13. Your Biologic Stopped Working: Is It Time To Switch? (2021)
14. What Happened When I Stopped Taking My Arthritis Medications (2020 – UPDATED FEB 2023)
15. Costochondritis: Chest Wall Pain with Arthritis
16. Ankylosing Spondylitis – 10 Years After Diagnosis (2019)
17. Keeping It Real With Arthritis – Contributing Author (2022)
18. Living with Ankylosing Spondylitis and Why We Must Keep Moving (2015 – UPDATED FEB 2023)
19. World Arthritis Day (Oct 12) and Why It Matters To Me (October 12)
20. BOOK REVIEW: Straight Talk On Spondylitis 4th Edition (2024)

Tips From A Veteran Patient About Living Successfully With Arthritis

1. How Do I Describe Chronic Pain To My Doctor? (2021 – UPDATED FEB 2023)
2. Pacing for Pain Management 2015 – UPDATED FEB 2023
3. Tips For Finding A New Rheumatologist (2022)
4. Tips for Heat Sensitivity with Arthritis 2022
5. Tips for Living with Arthritis and Cold Weather 2023
6. Questions For Your First Rheumatology Appointment 2024

Arthritis Event Coverage – MEGA POSTS WITH axSpA EXPERTS

1. American College of Rheumatology Convergence Nov 2021 – 5 Things I Learned About Spondylitis (Nov 2021)
2. SAA Global Spondyloarthritis Summit 2022 – Event Recap (May 2022)
3. American College of Rheumatology Convergence Nov 2022 – Things I Learned About Spondyloarthritis (Nov 2022)
4. ACR23 SpA Research for the Spondyloarthritis Community at the American College of Rheumatology Convergence in San Diego (November 2023)
5. SAA 6th Annual Global SpA Spondy Summit 2024 – EVENT RECAP (May 2024)

Alternative Treatments for Ankylosing Spondylitis

1. Have You Tried This For A Cure? (2024)
2. Compression Socks and Chronic Pain: How Do They Work? (2023)
3. Foot Reflexology for Chronic Pain (2022)
4. Jin Shin Jyutsu: An Alternative Treatment (Acupressure) (2016)
5. Treating AS with Traditional Chinese Medicine and Acupuncture (2013)
6. Traditional Chinese Cupping: My Experience (2007)
7. Traditional Chinese Scraping: My Experience (2007)

Interviews with Arthritis Advocates

1. Interview with Jennifer Walker – Art Therapy for Arthritis
2. Interview with Karen Swank Fitch – Using Art To Cope with Arthritis
3. Art, Advocacy, and Adaptation: Carrie’s Journey with Difficult to Treat Axial Spondyloarthritis with Cheryl Crow Dec 19, 2024

Features

• SAA SpondyCast with Jill Miller: From World Traveler to Warrior Advocate (2024)
• AiArthritis – International Foundation of Autoimmune and Autoinflammatory Arthritis (2023) Host for World AiArthritis Day
• The Spondylitis Association of America – Carrie Kellenberger My AS Story
• ASIF – Axial Spondyloarthritis International Federation – May 2022 Newsletter for SAA Global Spondyloarthritis Event Recap
• National Taiwan Education Radio
• ICRT Radio
• Taiwan News
• VeryWellHealth – How To Find Support for Ankylosing Spondylitis
• Taipei Times – The Walking Spondies – A local team walking for ankylosing spondylitis, a form of progressive arthritis, is organizing a walk and picnic tomorrow in Taipei’s Da-an Park
• Keeping It Real With Arthritis: Stories from Around the World – Contributing Author
• AmCham Taiwan Business Topics: Accessibility for Taiwan’s Disabled: A Work in Progress
• Faces of Ankylosing Spondylitis – Carrie Kellenberger Face 1649
• Walk AS One – Founding Board Member, 501c3 Non-profit 2016
• Walk Your AS Off – Author, Team Captain, Site Manager, and Founding Board Member for Walk AS One (WYASO’s official parent site) https://walkyourasoff.com/author/globetrotteri/
• Creaky Joints: 3 Days… We Can Wish