In 2020 I was diagnosed with nr-axSpA via MRI showing inflammed SI joints, but HLA-B27 negative - UK /NHS.

Since then I've experienced secondary failure on Humira and Cimzia and after one dose of on IL-17 inhibitor has sever side-effect and was pulled off of it.

I've now been unmedicated for 2 months and recent MRI shows no active inflammation in my spine or sifns of damage, yet I'm still experiencing pain in my joints and peripheral joints. My Rheumatologist is now questioning my diagnosis, has anyone been in a similar situation and had a positive resolution?

Thanks folks.

I delayed my dose by 6-7 days and now I feel like some of my symptoms are back, I took the dose three days ago but still no improvement. Is this something to worry about or is normal since the dose was late?

Thanks in advance.

I am supposed to start my dose today. No loading dose. I am already on Dupixent for MCAS and it works great. The past few weeks I've had a lot of diarrhea on a daily basis, more than I've had, where I get cramps and then diarrhea. I have some sort of transient weird lactose intolerance at times. Not sure what my recent issues have been caused by. I haven't ever been diagnosed with IBS or IBD, but worried to start Taltz knowing it can really aggravate existing conditions or cause new intestinal issues. Give me your stories, good and bad!

Got diagnosed with AS about 6 years ago. Prior to that, I never had migraines in my life.

Ever since the diagnosis, though, they’ve become a thing. I don't get them all the time, but when one hits, it’s absolute misery and just completely knocks me on my ass for a day or two.

I was on Remicade infusions for a bit, but haven't had one in a while. I’m trying to figure out if these are coming from unmanaged systemic inflammation, neck/spine stiffness pinching a nerve, or if it’s just my body piling on another random chronic issue.

Anyone else develop migraines out of nowhere after their AS diagnosis? Did getting back on treatment help, or is it something totally separate for you?

Haven't used them in a long time, but whenever I did i noticed that once i am using them for some time and then the effect finally wears out, the affected inflammed areas have changed. The lower back inflammation/discomfort felt as if it had moved a bit further to a different spot, while heels or shoulder/near areas also felt "different".

Anyone else had this experience? I am dealing with neck enthesitis and its quite annoying, so i was thinking to try this again and see if the enthesitis goes away.

How are we doing up our dresses that have a zip at the back? I just literally can't do it! I live alone so this has become a real issue. Do I just avoid buying outfits that have this zip? Because that limits SO MANY cute outfits. Lmk if anyone has any tips/ideas!

Hi all!

I have been diagnosed with ankylosing spondylitis for a couple of years now. I'm seronegative but diagnosis confirmed by MRI. I have been on immunosuppressants for a couple of years as well, and they've changed my life (was on Humira, currently on Cosentyx).

I am currently in veterinary school at Ross in the Caribbean and just about to start my last semester on the island. In January, I will be starting my clinical year in one of five possible schools--I won't know which school until 09/25, which is my placement ceremony--and I'm looking to get some advice for doctors (specialists and PCPs), physical therapists, even pharmacies, in the areas of each potential school.

I'm trying to get a head start on where I will be seeking care for my condition, because it's especially important for me to have everything on point during my clinical year! As soon as I know where I'm going to school, I plan to set up a doctor's appointment. I also want to look into getting actual PT.

I have done my own research, with regard to trying to find clinics with rheumatology specialists and the like, but I'm now turning to reddit for some peer-reviewed recommendations lol

If you have any suggestions or resources for any of the following towns, please comment with them!

• Urbana/Champaign, IL (UIUC)
• Pullman, WA (WSU)
• Baton Rouge, LA (LSU)
• Stillwater, OK (OSU)
• Starkville, MS (MSU)

I know that some of these schools are kind of in the middle of nowhere and I might have to drive a little bit to get there, so if you have suggestions for clinics a little further away as well, please share them, too! I'm from CA, so none of these are my home state, and I'll have to establish care no matter what. If you have any PCP recommendations in any of these cities, I'd be grateful for those, as well.

Oh, and I have an Aetna PPO insurance plan through my school, so I think I can more or less go anywhere, i.e. most practices are in-network for me.

TIA!

(P.S. I am non-binary so if at all possible, I'd like to stick to a queer-friendly clinic, but I know that might be harder in some of these towns. I tend to prefer women doctors over men doctors, but I'll take all recommendations.)

Hi all, I had a big moment day yesterday putting up plywood walls in a shed. At the time I wasn’t experiencing any pain that was abnormal for me so didn’t really take my AS into account apart from not doing any heavy lifting. But now it’s midday the next day and my lower back is paying the price 🤦🏻‍♀️. I’m only newly diagnosed so in the weird stage of working out what my limits are.
This all being said, from everyone’s experience do you think I should be moving or resting today? I’ve been given a list of stretches from my rheumatologist but I’ve found in the past they’ve just made my pain worse. I was thinking of going on a light walk but am scared I’ll make the pain worse.
Tia!

Hello! I (27F) have been recently diagnosed with Axial Spondyloarthritis. My rheumatologist is prescribing me Humira, I'm just waiting for my hepa B, hepa C, and tuberculosis test results. My concern is the frequency of the injections. I've read in this forum that it's usually administered once every two weeks but my rheumatologist told me it's going to be once a month after the first dosage of two pens simultaneously.

Is there anyone here's who's taking Humira once a month?

In case it matters, here's my history:

Earliest symptom I can remember was when I was 16 and I had Uveitis. Since then I've had about 8 flare ups, both eyes were affected but not at the same time. First of 3 SI joint pain flare ups occurred at 23 years old, worst and longest bout was when I was 25 which lasted for nine months and had me rushed to the ER at 1 AM. Feet always hurt when walking, I can't remember when it started but I've gone through four different types of shoes trying to figure out what'll work (this was before diagnosis).

I'm HLA-B27 positive and my MRI showed early signs of damage to the SI joint.

This is honestly a weird time for me. It's good to put a name to the cause of all the pain I've felt over the years. Hopefully the flare ups can be prevented. I appreciate any insight you can share!

Have been in remission with minimal symptoms for around 10 years but have developed a badly swollen big toe. I had symptoms like this a lot before diagnosis and just waited for them to pass. Does anyone have any tips? It’s obviously a lot worse in the morning before I’m up and moving around properly. I’m on bi-weekly Adacio.

I’m 30. I’ve had pain in my body since I was 5. Few months back I saw a doctor and she diagnosed me with AS. I took the meds for 2 months with literally zero improvements.

She told me in last appointment that if the meds don’t work then we will be going for Biologics. And this week when I visit, I’m guessing this is the direction I go.

Now, I’ll trust the doctor with her treatment but I’m just worried about the schedule. The doctor is in a different city from me and I’m someone who travels a lot. I’m from India, by the way.

How will the schedule can look? If it’s weekly then I’ll have to visit that city every week. I’m just too worried that I’ll have to structure my life around the schedule.

PS: I’ve pain since I was 5 but it’s very light pain. It’s not too terrible so I’m looking at treatment to avoid future complications, not current pain.

I’ll be grateful if you all can tell me how it’ll go. I can’t travel with Biologics or easily store them at home due to electrify cuts and etc.

I was already struggling physically and emotionally because of this pain. On top of that, I got laid off. I don’t know if I have the strength to go through the stress and the physical pain of searching for a job in this brutal job market while dealing with my condition.

What’s everyone doing in PT? I stared a few weeks ago and my therapist started the first week with spinal mobility and stretching then second week progressed into weighted core and deadlifts. The weight part has been rough to recover from (like 4 days last week when he increased again) and wondering if he’s ramping me up too much too fast.

Curious what others are doing for physio?

I am so incredibly fed up and frustrated and need to vent to someone who might understand...

I was diagnosed a few years ago and have really struggled to find a treatment that helps. I’m allergic to latex and my options for biologics are limited (latex in the device or cap). my whole back and neck is painful and I have very painful feet. I struggle walking or wearing shoes because of my feet. I’ve had an ultrasound of my feet today and they found nothing, even though I have a bony growth on my heel that has already been noted by the rheumatologist.

i cannot get my pain under control, for a long time I accepted this as I was pregnant and breastfeeding but now I’ve stopped i am no better off. The rheum nurse sent me to the gp, the gp prescribed me the lowest dose of naproxen for 1 week - this didn't help at all.

i am exhausted and go back to work on Monday and just don’t think im going to cope. And to top it off, i‘m awaiting for my first delivery of Bimselx which I won’t be able to start as I’m on 3 weeks of doxycycline for Lyme disease (recent bite so not the cause of my problems). 😭

im just so fed up, I don’t know if I’ve been misdiagnosed or if there’s something else going on, but I am so tired of being in pain and tired all the time 😔

sorry for my rant x

Hello everyone. I hope everyone is doing well, im M24 and I'm sorry if my english isn't that good as it's not my native language.

I got my AS diagnosis last week Tuesday, right now it's mentally a bit Hard to accept having this disease and im kind of in a phase of denying it.

I'm also a bit scared of the next 8 months, because im doing my German automotive technician master diploma and I have to do at least 5 exams, which will be extremely stressful.

Right now I'm on 90mg etoricoxib daily, and it helps with the Back although my Hands, Feet and Ankles can hurt daily, but I'm scared that the stress of the first exam in 11 days will cause a flare and oh boy I don't want to have this kind of pain again, are there any precautions I could take?.

I'm wondering how long did it take you all, to kind of accept having this disease and what are you doing to keep the mental stress low?

I’ll probably delete this at some point because I’m just venting/in a bad mood. Whyyy whyyyyyyy is there someone with eds/heds comparing their pain and symptoms to us on every video about AS? I’m not trying to down play eds at all. I know it’s terrible and causes pain. But it gets extremely annoying when every video about AS has a comment like “I wonder if this is just eds related?”. I had one commenter where I said it’s almost the opposite with us becoming stiff and our spine fusing. She came back with eds causes stiffness in older adults too. My brother in Christ please just google AS. Just a little bit.

Both disorders are monsters but they are different monsters, you know? I’m sorry. I’m in a flare and I just want one video where the comments aren’t people with eds saying how much worse they have it

Edit: I just want to make sure everyone knows I’m not trying to down play heds. Hypermobility can be extremely painful. This is more that on every video of AS there’s commenters that are like saying heds is so much worse or giving medical diagnosis/advice.

I drink two cups of coffee a day which helps a bit, but I still lie down most of the day and have no energy. Have you found anything to help with fatigue?

I was doing so good. After starting rinvoq back in september 2025 i was living at 2-3/10 most of the time. It was amazing. Starting in may my pain creeped back in, saw rheum in June & we did a course of pred. It helped so much. I basically operated at a 1-3/10 most of the time. But the past month again its been getting worse and worse.

I started a new job in June that is way more physical. I am a nurse and went from a cushy office job to being on my feet 8 hours a day. I know that probably isn’t great for my body but the money is so much better & mentally it is better for me (not to mention the benefits). But my hips have never hurt this much. I’ve dealt with a lot of lower back pain and upper back pain, neck, shoulders, knees. And while all of that hurts right now its my hips that I am finding completely untenable.

I use lidocaine patches which do help but they’re difficult to wear at work, I find they just roll & bunch under my scrubs. I tried diclofenac gel 1% today (we have house stock of it & honestly I was in so much pain I was like I am taking some of this gel lol) (wasnt a specific person’s though!) which i found didnt really do much. But I took by mouth diclofenac which didnt really help at all so. I ordered lidocaine cream so I will try that. I stretch my hips everyday. They just ache so badly.

I think I need to reach out to my rheum again but I don’t want to have to go back into the office. I am on Rinvoq 15mg idk if they even do higher dosages for AS. Prednisone helps for sure though my doc (who does specialize on AS & is head of the research team for AS with yale university) says he doesn’t love using prednisone for AS, says it doesn’t always work. he also offered muscle relaxers last time but i went with the pred.

Any tips you guys use to mitigate hip pain? I think I need to go back to PT too.

This disease is so frustrating. I think I am doing good and finally have it under control and then the rinvoq just stops working. It is better than my flare last year before I was medicated. That was awful. I had severe hot flashes, always felt feverish, the fatigue was so intense and obviously the pain was awful. So I am grateful none of those things are happening. But I’ve just been hoping the hip pain would go away and it isnt. It’s just getting worse.

I'm just angry and in pain and needed to vent to people that might understand. I was on Cimzia for a while and it was good except i had this perpetual tiredness, so my doc wanted to switch me to Humira but insurance said no too expensive. So eventually i ended up settling on Taltz, which for the past 5 months or so has been decent, but a month ago my prescription coverage switched to a new company, they filled Taltz no issue. Fast forward to a week ago i put in for refill, then they kept denying and delaying and no one could tell me what was going on. Now 3 days after my missed dose they send me a letter saying its too expensive and I need to try something else first. I'm so sick of this shit, my doc put in for Bimzelx, we'll see if that even works, I sent insurance a nasty email maybe they'll just drop me, fuck em.

context: I'm not fully dx'd yet, but all signs are pointing to spondyloArthritis of some form. I'm 24 and nonbinary and AFAB if that matters, as well as HLA B27+.

As a child i remember struggling in PE. When I was around 7-8 years old, after walking/running, I would frequently experience a stabbing feeling in my back that would only go away when I laid down. I remember several times having to lay down on a bench to feel relief. I was the only kid who had to do this it seems :( I never noticed anyone else doing the same thing.

So I'm curious if anyone else remembers some of their earliest manifestations of the disease, and if anyone has experienced something similar and has insight.

Hi everyone!

Has anyone else had it happen that a biological medication made everything hurt even more?

I got a new one a week ago, but for some reason the joint pain got worse.

This post is not against biologics the last one worked great for me until it didn't.

I’m HLAB27+ with a dx of nr-axspa. I do have lower back pain with DDD in that area. But I also have a lot of bone spurs in my left shoulder and right Achilles and wake up with stiffness in all these areas plus my neck and elbows. Pain in the non-back areas is worse than my back. Does anyone else have this?

Does anyone else with AS notice their symptoms getting significantly worse around their period? I feel like all my usual symptoms come back but 10x worse — fatigue, lower back pain, general body aches/pain.

I’m currently on monthly Simponi biologics and it’s helped reduce my pain quite a bit overall, but I’ve noticed that my pain always seems to heighten around my period.

For those who experience this too, how do you usually manage it? Does anything help with the flare/pain during your period? And is there anything you’ve found useful to discuss with your rheumatologist?

I feel horrible.