Quick note: This guide is for education and appointment prepnot a substitute for medical advice. Ankylosing spondylitis (AS) is treatable, and the “best” plan is the one you and your rheumatologist can actually live with (and that your immune system agrees to sign off on).
Why a Doctor Discussion Guide Helps (Even If You’re “Fine-ish”)
AS is a chronic inflammatory arthritis that mainly targets the spine and sacroiliac (SI) joints, but it can also involve hips, shoulders, and the spots where tendons attach to bone (entheses). It can come with extra “bonus features” like eye inflammation (uveitis), psoriasis, or inflammatory bowel disease (IBD). Because symptoms can wax and wane, it’s easy to downplay them at appointmentsand then later wonder why your plan doesn’t match your real life.
A discussion guide keeps the visit focused on what matters: controlling inflammation, protecting mobility, preventing complications, and getting you back to regular human activitieslike sitting, sleeping, working, and existing without feeling like your back is auditioning for a horror movie.
Before Your Appointment: A 10-Minute Prep That Pays Off
1) Bring a “symptom snapshot” (the short version)
- Pain & stiffness timing: Is it worse in the morning? How long does morning stiffness last?
- Movement effect: Does activity help (common in inflammatory back pain) while rest makes it worse?
- Night symptoms: Do you wake up due to back/hip pain?
- Functional impact: What’s harder nowdriving, desk work, workouts, sleep, stairs?
- Flares: How often, how long, and what seems to trigger them?
2) List all medications and “almost-meds”
Include prescriptions, over-the-counter NSAIDs (like ibuprofen or naproxen), supplements, and anything you stopped because of side effects. Write down dose, frequency, and what actually happened when you took it (helped a little, helped a lot, upset stomach, did nothing, etc.). This is gold for your doctor.
3) Bring your “body-wide” checklist
AS isn’t always polite enough to stay in one area. Tell your doctor if you’ve had:
- Eye symptoms: sudden painful red eye, light sensitivity, blurry vision
- Gut symptoms: chronic diarrhea, blood in stool, unexplained abdominal pain
- Skin/nails: scaly patches, new psoriasis
- Chest/rib tightness: trouble taking a deep breath
- Heel pain: especially at tendon attachment points (enthesitis)
Start the Visit With Shared Treatment Goals
A good AS plan isn’t just “reduce pain.” It’s usually a package deal:
- Lower inflammation (not only symptoms)
- Maintain posture, flexibility, and function
- Prevent or slow structural damage (like progression in the spine)
- Protect quality of lifesleep, work, exercise, mood
- Reduce flares and complications (eyes, gut, hips)
Ask your clinician what success looks like for you: fewer flares, improved mobility, lower disease activity scores, better sleep, or fewer missed workdays.
Key Questions to Ask Your Doctor (Copy/Paste Friendly)
Diagnosis & disease activity
- Do my symptoms fit ankylosing spondylitis (radiographic axial spondyloarthritis) or non-radiographic axial spondyloarthritis?
- What do my imaging results show (X-ray vs. MRI)? Are my SI joints inflamed?
- Which labs matter for me (CRP/ESR)? Are they elevated?
- How will we measure disease activityBASDAI, ASDAS, function tests, or symptom tracking?
Treatment plan
- What’s our step-by-step plan if the first treatment doesn’t work?
- How long should I try a medication before we decide it’s helping?
- Should I see physical therapy? What type of exercises are best for my pattern of symptoms?
- What should I do during a flareadjust meds, change activity, or contact your office?
Medication safety & monitoring
- What side effects should I watch for, and what symptoms are “call today” problems?
- Do I need screening for TB or hepatitis before starting a biologic or JAK inhibitor?
- Which vaccines should I update before immunosuppressive therapy?
- How often will I need labs, and which ones?
Whole-body concerns
- Could my eye/gut/skin symptoms be related to AS?
- If I have IBD or uveitis risk, does that change which biologic is best?
- Do I need bone health screening (osteopenia/osteoporosis risk can happen in inflammatory disease)?
Understanding Your Treatment Options (So the Names Aren’t Just Alphabet Soup)
Foundation: Exercise and physical therapy (yes, really)
Exercise is not a “cute add-on” for ASit’s one of the core treatments. The goal is to preserve spinal mobility, posture, chest expansion, and function. Physical therapists can teach:
- Mobility and stretching for spine and hips
- Posture training (so your future photos don’t all look like you’re leaning into a dramatic monologue)
- Core and glute strengthening to support the spine
- Breathing/chest expansion exercises if rib involvement is an issue
Ask for a plan that fits your life: short daily routines often beat “one heroic workout” followed by three days of regret.
First-line medication: NSAIDs
Nonsteroidal anti-inflammatory drugs (NSAIDs) are commonly first-line because they can reduce pain and stiffness and help function. Your clinician may recommend taking them consistently for a period (not just “randomly on bad days”) to see if inflammation settles.
Important discussion points: stomach irritation/ulcer risk, kidney effects, blood pressure, and cardiovascular risksespecially if you need higher or frequent dosing. If you’ve tried one NSAID and it didn’t help, ask whether trying a different NSAID makes sense before moving on.
When NSAIDs aren’t enough: Biologics
Biologic medications (biologic DMARDs) are often used for active AS when NSAIDs don’t control symptoms or inflammation. The two major biologic families used in AS include:
TNF inhibitors (TNFi)
TNF inhibitors have a long track record in AS and are commonly used as the first biologic. Examples include adalimumab, etanercept, infliximab, certolizumab pegol, and golimumab. They can reduce inflammation, improve pain and function, and may help with certain extra-articular issues.
Conversation starters: injection vs. infusion, how quickly you might notice improvement, infection risk, and how your other health conditions (like recurring infections) change the risk-benefit picture.
IL-17 inhibitors
IL-17 inhibitors are another effective biologic option for AS. Examples include secukinumab and ixekizumab, and some resources also list bimekizumab as an option used for AS in certain settings. These may be considered if TNFi are not appropriate or didn’t work well.
Key nuance to discuss: If you have IBD symptoms or a history of Crohn’s/ulcerative colitis, your doctor may prefer certain TNFi options because IL-17 blockade can be problematic for some bowel disease patterns.
Targeted oral options: JAK inhibitors
JAK inhibitors are oral targeted immune therapies used in specific AS situations (often after inadequate response to other treatments). Examples sometimes discussed for AS include upadacitinib and tofacitinib. These require a careful safety conversation because they can increase infection risk and have important boxed warnings and monitoring requirements.
Ask: “What screenings do I need before starting?” and “What symptoms should make me stop and call you?”
Conventional DMARDs and steroids: where they fit (and where they don’t)
Traditional DMARDs like sulfasalazine may help peripheral arthritis (knees/ankles) but tend not to help the spine itself as much. Systemic steroids are generally not a long-term strategy for axial disease, but local steroid injections can sometimes be considered for specific problem joints or enthesitissomething to discuss case-by-case.
Surgery: uncommon, but sometimes life-changing
If AS severely damages the hip joint, hip replacement may improve pain and function. Spinal surgery is much less common and is typically reserved for specific complications. If your hip pain is a major driver of disability, bring it up directlyhips can be a big deal in AS.
How to Choose Between Treatments: The “Context” Questions That Matter
Two people can have the same diagnosis and need different plans. Your doctor may consider:
- How active the disease is (symptoms, function, CRP/ESR, MRI findings)
- Where inflammation shows up (spine only vs. hips vs. peripheral joints)
- Extra-articular features (uveitis, IBD, psoriasis)
- Infection history and vaccination status
- Other conditions (heart failure, demyelinating disease, liver issues)
- Life logistics (needle comfort, travel schedule, insurance coverage, ability to do labs)
You can help by being specific: “My main goal is sleeping through the night,” or “I want to keep running,” or “I can’t take meds that flare my gut.” These details guide smart choices.
Monitoring and Follow-Up: What You Should Expect (So You Don’t Feel Ghosted)
AS treatment is rarely “set it and forget it.” Monitoring commonly includes:
- Symptom tracking: pain, stiffness duration, fatigue, flares
- Function: walking distance, sitting tolerance, work capacity
- Lab tests: CRP/ESR and medication-specific safety labs
- Imaging: sometimes MRI for unclear disease activity or to assess inflammation
Ask your clinician: “How will we know this is working?” and “When will we reassess if it’s not?” Clarity prevents the frustrating cycle of suffering silently between appointments.
Vaccines, Infections, and Travel: Don’t Let This Be an Afterthought
If you’re starting (or already on) biologics or JAK inhibitors, infection prevention becomes part of your treatment plan. A practical approach is to review vaccines before you begin immunosuppressive therapy when possible. Live vaccines may not be recommended during certain immunosuppressive treatments, and timing can matterso bring this up early, especially if you travel frequently or have school/work requirements.
Appointment tip: Bring your vaccine history (or your patient portal record) and ask: “Which vaccines do you want me to update now?”
A Sample “Script” for Your Appointment (Steal This)
You: “My morning stiffness lasts about 90 minutes, and I wake up at night from hip pain twice a week. Exercise helps, but sitting at work makes it worse.”
Doctor: “That sounds inflammatory. Let’s review imaging and labs.”
You: “My main goals are sleeping through the night and being able to work a full day without needing a heat pad glued to my back. What’s our plan if NSAIDs aren’t enough?”
You: “Alsomy right eye was painful and red last month. Could that be uveitis? Does that affect which medication is best?”
Clear, specific, and focusedwithout needing a medical degree or a dramatic PowerPoint presentation.
Conclusion: You’re Not “Complaining”You’re Collaborating
AS care works best when you and your clinician act like a team: you bring the lived experience, and they bring the medical strategy. A strong plan usually combines movement/physical therapy, smart medication choices (NSAIDs, biologics, or targeted oral therapies when needed), and regular monitoring for both disease activity and side effects. If something feels offflares, eye symptoms, gut issues, or medication concernssay it out loud. The goal isn’t to “tough it out.” The goal is to protect your spine, your function, and your life.
Real-World Experiences and Tips (Common Patterns Patients Talk About)
People living with ankylosing spondylitis often describe a weird emotional whiplash: on a “good” day, it’s tempting to believe the problem was exaggerated; on a “bad” day, it’s tempting to believe the problem is unstoppable. Many patients say the turning point wasn’t a single medicationit was learning how to describe symptoms clearly and consistently, so the care plan matched reality.
Experience #1: “I didn’t realize my back pain was ‘inflammatory.’” A lot of patients report they spent months (or years) treating AS like mechanical back painresting more, moving less, and feeling worse. Once they noticed the pattern (morning stiffness, pain improving with movement, night pain), the doctor conversation changed. Patients often say: “When I walked in with specificshow long stiffness lasted, what activity did, how often I woke upmy doctor could act faster.”
Experience #2: NSAIDs helped… until they didn’t (or the stomach revolted). Some people do well on NSAIDs and a consistent exercise routine. Others hit limits: incomplete relief, flare cycles, or side effects like heartburn or blood pressure changes. A frequent lesson is that “I took ibuprofen sometimes” isn’t the same as a real anti-inflammatory trial. Patients who got clearer guidancedose, schedule, and how long to tryfelt more confident about whether it truly worked.
Experience #3: Physical therapy felt too simple… and then became essential. Many patients admit they rolled their eyes at posture work and gentle mobility drillsuntil they realized small daily habits had big payoff. People often report that short routines (10–15 minutes) were more sustainable than intense workouts. Swimming, walking, and strength training are commonly mentioned favorites because they support the spine without pounding it. Patients also talk about “micro-breaks” at work: standing up every 30–60 minutes, doing a quick stretch, or using a lumbar support. Not glamorous, but effective.
Experience #4: Starting a biologic can be emotionally complicated. Some patients feel relieffinally, a therapy designed for immune-driven inflammation. Others feel nervous about injections, infection risk, or the idea of “strong meds.” What helps, people say, is a practical safety plan: screening tests, vaccine review, a clear list of warning signs (fever, persistent cough, unusual infections), and a plan for what to do if they get sick. Patients often appreciate when their doctor explains what “response” means and when to reassess, so they don’t wait endlessly hoping for magic.
Experience #5: The “extras” mattereyes, gut, skin, fatigue, mood. Many patients describe feeling dismissed when they brought up fatigue, brain fog, or mood changes. But chronic pain and inflammation are exhausting, and sleep disruption is a real villain. Patients who did better long-term often mention they finally told their doctor: “Sleep is my biggest issue,” or “My gut symptoms flare with my back pain,” or “My red eye episode scared me.” Those details can influence medication choice and referrals (ophthalmology, gastroenterology, dermatology), which can prevent bigger problems later.
Big takeaway: The most useful “experience” advice isn’t a secret supplement or a perfect mattress. It’s learning to communicate patterns, prioritize goals, and build a plan you can repeat on normal daysnot just when motivation is superhero-level.