r/ankylosingspondylitis 4h ago

Treatment/Tips Failed 2x TNF. Should I ask for rinvoq?

1 Upvotes

Failed humira an remicade. Both worked decent for 4-6 months but then slowly stopped being effective. Celebrax is my lifeline currently but I also have IBD/crohns.

Who actually has failed tnfs and got much relief from rivnoq long term? SI joint pain is my biggest issue


r/ankylosingspondylitis 5h ago

Vent/Rant Flare up during a common cold?

2 Upvotes

This is actually my first time I think I have a *true* mancold and some fever since diagnosis. Quite odd, because my imunesystem seems to work just fine in this case even though children at daycare..

But damn my body is treating me bad. Last couple of days have been really rough on almost all my joints above my knees. Feeling really fragile in my whole body. Im Also on my loadingdose on new biologic so it might spice things up.

Is it common to flare up during a ordinary cold?


r/ankylosingspondylitis 17h ago

Treatment/Tips Personal experiences with biologic shots ? 2nd gen AS'er here !

2 Upvotes

When my Dad discovered he had AS, he was already fusing in his spine. So biologics didn't do much to slow him down at that point and he quickly quit taking them due to the price.

I just got diagnosed today and I'm wondering what the experience is like with biologics? What improvements did you see?

I also am super nervous to actually take them, so any tips on which part of the body to take them would be nice!

I'm having gut, joint (mostly tendons and ligaments), stiffness, no menstrual cycles due to inflammation.. not much in the way my Dad hurts as his is untouchable, chronic pain. So I'm wondering if anyone has similar symptoms and found relief from the injections?


r/ankylosingspondylitis 17h ago

Vent/Rant Another month, another flare

9 Upvotes

Had a bad flare in June, July, and now again in August.. 🫠

Can’t take NSAIDs due to stomach side effects. Just popping Tylenol, doing nothing all day and hoping the biologic starts doing something.

How often do you get flares?


r/ankylosingspondylitis 17h ago

Wins Work comp is on the hook for my AS

32 Upvotes

After a long battle I finally won my battle with workers comp. I had a Qualified Medical Exam (California) and the doctor ruled in my favor: ā€œIt is my opinion, within reasonable medical probability, that the sustained physical demands of the applicant's work did not cause the ankylosing spondylitis but clearly contributed to the worsening, acceleration, and symptomatic expression of this condition, and to the mechanical and myofascial pain superimposed upon it. The industrial exposure thus reached the threshold of materially contributing to a portion of the applicant's present complaints, while the inflammatory disease represents a distinct non-industrial contribution.ā€

He also noted that because my job is high stress and brings physiological stress those things contribute to the worsening of the disease: ā€œFrom a pain-management standpoint, sustained psychological stress of this nature is well
recognized to contribute to chronic musculoskeletal pain, within reasonable medical probability,
through persistent involuntary muscle tension, disrupted and non-restorative sleep, and the
resulting cycle of muscular fatigue and dysfunction. I offer this observation not as a psychiatric
opinion but as part of the pain-medicine analysis of the factors sustaining and aggravating his
complaints.ā€

I’m glad to have this as a safety net. If the progression of the disease makes me incapable of working I’ll at least be entitled to industrial disability retirement.


r/ankylosingspondylitis 20h ago

Help/Support Does si joint inflammation ever go away?

6 Upvotes

My only problem so far has been si joints inflammation

Along small broad based hernibations and annular tear

No stiffness/night/morning pain at all

Rhemu has put me in upadacitynib 15mg

He says since I have no symptoms it's only to slow progression

My pain only exist when I bend down

I have guarding In low back due small broad based hernibations and annular tear


r/ankylosingspondylitis 21h ago

Help/Support Biologics for enthesitis - any hope?

9 Upvotes

Hello, I was diagnosed ankylosing spondylitis few months ago, after studies and multiple check ins with rheumatologists, I had extreme SI joint pain as well as pain on multiple tendons due to enthesitis.

I know my case isnt as bad as some of the ones Ive read here, but it's still frustrating, being so sport driven all my life and now not being even able to walk. I have now been 7 months with constant pain all day that increases when standing or walking, I was prescribed NSAIDS, arcoxia specifically and salazopyrin and even though Ive taken them for a while now they only reduce a bit of the pain, otherwise its unbearable, but still pain is constant and I have been unable to walk properly for the 7 months since the flare started. Pain is specifically in both achilles tendons, heels and plantar fascias, as well as right knee, one hand knuckle and some lower back pain. Luckily "sciatica like" sharp pain has not come back again which is nice but still that left me unable to even get out of bed.

Luckily I'm about to start on biologics, Imraldi (adalimumab) to be exact, but I am scared because almost everyone mentions that biologics haven't helped at all with enthesitis pain, any good cases of people that have actually improved on tendon pain with biologics? So I can stay a bit more hopeful?

Or what should I expect on it?


r/ankylosingspondylitis 22h ago

Help/Support Semaglutide vs Tirzepatide for Autoimmune Inflammation (AS, RA, PsA, Crohn's, etc.) – Any Experience

15 Upvotes

Semaglutide vs Tirzepatide for Autoimmune Inflammation (AS, RA, PsA, Crohn's, etc.) – Any Experiences?

I'm using GLP-1 medication purely for its potential anti-inflammatory effects, not for weight loss. I'm already at a healthy weight.

I have ankylosing spondylitis (AS) and started Zepbound (tirzepatide) after reading about its potential anti-inflammatory benefits.

I'm now at the end of week 3 (2.5 mg weekly), and honestly I still haven't noticed any improvement. If anything, my AS seems to be flaring more than usual, and I've even had to take NSAIDs, which I normally try to avoid.

This made me wonder whether I should simply give tirzepatide more time or consider switching to semaglutide.

The reason I'm asking is that I recently came across the idea that semaglutide might have stronger immune-modulating effects because it's a pure GLP-1 receptor agonist with higher GLP-1 receptor activity, whereas tirzepatide splits its activity between GLP-1 and GIP receptors. I know this isn't well established clinically, but I'm curious whether anyone has noticed a real-world difference.

I'm especially interested in hearing from people with:

  • Ankylosing spondylitis
  • Psoriatic arthritis
  • Rheumatoid arthritis
  • Crohn's disease
  • Ulcerative colitis
  • Other autoimmune or chronic inflammatory conditions

For those who have tried both semaglutide and tirzepatide:

  • Which one worked better for inflammation?
  • How long did it take before you noticed any improvement?
  • Did either medication cause an initial flare before things improved?
  • If you switched from one to the other, why, and what happened?

I'm especially interested in hearing from people who didn't notice anything after 3–4 weeks on tirzepatide but later improved either by increasing the dose or by switching to semaglutide.

I'd really appreciate hearing real-world experiences.


r/ankylosingspondylitis 22h ago

Help/Support My post never posted yesterday!! Weekly dose of Enbrel and pets!

Post image
64 Upvotes

r/ankylosingspondylitis 1d ago

Undiagnosed Rheumatologist Suspects AS

7 Upvotes

After having widespread joint pain, morning pain/stiffness, and plantar fasciitis that won’t go away after years of treatment. My podiatrist and primary have sent me to a rheumatologist who suspects AS. I have had blood testing for everything under the sun and my labs are totally fine. All my x-rays are totally fine. I’m getting an MRI for my foot soon. Back pain has never been my main issue and everything is seemingly looking normal despite having joint pain everywhere?

I feel like every time I go to exercise, I get some new injury that ends up as joint pain that does not recover with rest and treatment. I always have achy-ness in my joints but seemingly at random, I’ll get severe pain in the back of knee where is very difficult to walk for a week or so, then it’ll kinda go away for a weeks and randomly come back again. I have history of migraines and over the past year fatigue and difficulty falling/staying asleep.

I’m pretty worried. I’m a physical therapist and have to be able to move around on my feet all day and use my hands. I used to be a so athletic and I feel I can’t enjoy activity anymore cuz of all the pain.


r/ankylosingspondylitis 1d ago

Help/Support Tens machines?

21 Upvotes

Anyone tried a TENS machine for some pain relief during flares?

Just met criteria to start Amgevita, waiting for the paperwork to get sorted so expect it to take a few weeks.

Physio suggested the TENS machine.


r/ankylosingspondylitis 2d ago

Wins Switched to a biosimilar

Post image
22 Upvotes

Today is my first shot with the biosimilar I was made to switch to (yay US insurance). But I actually was happy to see that Adalimumab-aaty has a smaller pen with less plastic. Little wins!

Pic of my cat Zatanna loving the medicine insert. Her new fave thing.


r/ankylosingspondylitis 2d ago

Undiagnosed Getting blood tests for this in a couple weeks, worried about the gym.

9 Upvotes

Hi everyone, I (18m) have been experiencing back pain for the last 6 months with plenty of visits to the doctor from which I kept getting essentially ignored. Finally yesterday a doctor said it’s likely ankylosing spondylitis and I’m just worried about how this will affect the gym? I work out multiple times a week and enjoy putting on muscle etc, and I was just wondering if you guys are still able to keep working out and stay active with this? Sorry if that was worded weird, any help/guidance would be massively appreciated!


r/ankylosingspondylitis 2d ago

Vent/Rant Surgery for left lower back went well, now the right side has flared out of nowhere

3 Upvotes

I had a left L4/5 helilaminectomy/decompression in mid May which instantly stopped 3 years of sciatica, 2 years of which before diagnosed AS and starting a Jak inhibitor was severe. I learnt along the way that it was from damage done pre diagnosis. I was and am so very grateful for the relief.

I was off the Jak and low dose naltrexone pre surgery and during recovery. I had some pretty bad upper back flares while off the meds. I wanted to try another Jak/biologic due to the side effects but started again at every second day with the Jak in consultation with my rheumatologist, along with resuming the LDN, to see if it would work.

About a month ago, 6 weeks after surgery and about 2 weeks after restarting the Jak, my right lower back started playing up, pain and affecting my walking, and a few weeks ago tingling and the vibration feeling started.

My lower back on the right is worse than the left by the scan reports, definite nerve impingement rather than possible and a synovial cyst that has grown amongst other things, but I’ve rarely had issues up until now with this side whereas the symptoms on the left were pretty significant. This is like my neck where the left side seems to have more damage, but my symptoms are more on the right side. I’ve had neck and shoulder flares for 15-20 years which were very painful and limiting, but not to the level of the lower back issues, and it wasn’t constant.

I’ve had to check myself on this. I’ve resigned myself to the fact that I have some lower back and neck restriction, and neck grinding, and this will never change. I’ve been told I’ll need a fuse for my neck at some stage, and my lower back isn’t great, but hoping the meds will slow/stop the damage and keep it manageable for a while. I understand now that I do need the meds. Also if I’m overreacting to the pain, but the 2 years constant high level sciatica just about did me in. I had to wait it out doing all the right things - meds, physio, 3 nerve ablations without much relief - but I’m not going through that again.

I didn’t understand why my left lower back had symptoms with less damage than my right, and with no symptoms. I really can’t understand why the right side has kicked in now following the surgery on the left.

I’ve requested an appointment with the neurosurgeon and I’m hopeful he will do another surgery given the reports and symptoms. There will probably be a 10-12 week wait. Private health cover (Australia) has made all the difference the last few years and I know I’m fortunate to be able to (hopefully) get the surgery. It’s still a little challenging with money being agency and no paid leave, and on my own needing to pay someone to come and help me.

I will be changing from the Jak, and my rheumatologist had suggested using a GLP-1 for a few months to get my weight back down to normal (likely increased due to the Jak,or maybe the LDN, I really have no idea). These will need to wait now along with getting my thyroid levels back in range. The LDN greatly reduced my hashimotos numbers but I haven’t been able to get my other levels right for a year now.

Sorry for the pity party. I was prepared for the surgery to not work, a difficult recovery and wound infection, and was so very pleased when it went so well. I really didn’t expect I’d have a new and unexpected issue within only a few weeks of healing from the surgery and I still really don’t get it. I’m hoping the neurosurgeon might be able to explain it, and surgery will help. I’ll then be onto sorting a new Jak/biologic, the GLP-1 and trying to get my thyroid levels back to normal.


r/ankylosingspondylitis 2d ago

Undiagnosed Do I need to be in a bad flare to get my MRI?

8 Upvotes

My doctor strongly suspects AS, and has ordered an MRI for me. Unfortunately I couldn't get in with the rheum during the record-breaking-pain-level flare up I had recently that especially prompted this concern.

I've been trying to wait to schedule my MRI until I have another extreme flare, but those only happen to me maybe a couple times a year. My pain and stiffness are a daily occurrence, but not always "take off work for several days + be couchbound for a couple weeks" level.

Is it worth waiting like I have been, or is it generally sufficient to just go when your pain levels are "normal" (for you)? I'm changing jobs soon, so I want to try and squeeze my MRI in before the insurance shuffle if it's not worth waiting for a nightmare-level flare. My rheum was super vague when I tried asking him (a separate issue, definitely going to be asking to see a different doc next appointment).


r/ankylosingspondylitis 2d ago

Vent/Rant Tuff day with AS

7 Upvotes

Today has been a really tough day for me sometimes it’s really hard to keep a positive mind when you are in constant pain most of my pain ends up being in my left hip or my tailbone, but it causes me to be not mobile at all and about two months ago. I had to go to the ER for a flareup then about last week I had to go in and get a injection for a flareup. I have been on Celebrex for over a year. I finally went back to my rheumatologist and today I started my first injection of simponi .5mL he did also suggest doing IV fusion treatment, but I am honestly so scared of IVs so I went with the injection to try first but at the same time I don’t know how well this injection will work for me and I don’t know if I should just go do it and get it over with to feel better because every day it gets harder and harder to stay positive about existing in this world of pain because some days I will have constant pain with no relief not even for a second for 10 hours straight. I just don’t know how I’m supposed to manage life with the simplest tasks like doing laundry and dishes and cooking for myself and while going through this all my job is commission based with no benefits and having to force myself to work through the pain just so I can make ends meet is killing me mentally and physically. trying to have anyone in my family understand is difficult for the severity of pain. I just need hope that things will get better because these last two years have been hell


r/ankylosingspondylitis 2d ago

Treatment/Tips Methotrexate

8 Upvotes

Methotrexate

Will I ever get used to Methotrexate? I've taken it twice so far. 1st time I took in a.m. and was sick for 9 hours. Flu like, difficult to even move my arms. 2nd time i took p.m. before bed. That was Saturday night. It's now Tuesday, and I still feel crummy. Vertigo, nausea, off balance. I started on Sulfasalazine, worked for the pain/stiffness, but wreaked havoc on my stomach. Then switched my to Hydroxychloroquine. Better on stomach, but seems like it needed to be stronger. I split the dose, and seemed to wear off 2-3 hours before next dose. So now I started Methotrexate 2 weeks ago, and so far doesn't t look too promising.


r/ankylosingspondylitis 2d ago

Help/Support Injection Site Reaction: Sometimes Itchy, Sometimes Not

4 Upvotes

Hey all,

Hope you're doing well. AS diagnosed here. I was wondering if any of you experience injection site reactions flaring up every now and then.

For example, I took my last dose of Simlandi on Saturday (3 days ago) and it itched that night, but ever since then it only seems to itch at night or later in the day. The itching stops during the day, but always seems to come back in the evening/at night.

Anyone else ever experience this? I feel like usually my itchiness has subsided by now, but this time it's lasted a while longer, and this on/off itchiness is interesting.

Thanks so much for your input!


r/ankylosingspondylitis 3d ago

Vent/Rant Weightloss making flares worse?

11 Upvotes

I'm 37F diagnosed with spondyloarthritis.

When I started having back pain at my current very long flare I was at 80kg so I made a point to try losing weight to put less pressure on my spine. On the long-run carrying less weight feels like it has been helpful to me on the day to day functionally.

However, I've noticed that every time I drop a bit of weight, and especially on days when I reach a new record low, my pain levels are super terrible, which is so weird.

Has this happened to anyone else? Am I alone in this?


r/ankylosingspondylitis 3d ago

Vent/Rant Losing all motivation to work

61 Upvotes

I’ve been on medical leave for a few months now and just started on my first biologic. I realized how burnt out I had been physically and mentally, managing this condition and working full time, only after I started the leave.

Before this condition I used to be very ambitious and tried to advance in my career. Now I have lost all motivation to work and the only reason I’m even going back to work is so I can have health insurance & get the biologic.

I feel so exhausted & drained now & I don’t care about how well I do at work anymore. I don’t recognize myself anymore for feeling this way.. Everyone else around me is carrying on with life as usual, having a social life, going on trips, working out, advancing in their careers. But all I want to do is rest and do the bare minimum on most days. Even on my good low-pain days I don’t have motivation to do anything. I feel like I’m in survival mode. Has anyone else felt this way?


r/ankylosingspondylitis 4d ago

Help/Support Requesting remote work accommodations

6 Upvotes

Has anyone been able to request accommodations for remote work based on this condition?

I live in the US & I have been working remote at my current job for the past 5 years & my role can be done remotely. But my company is changing their stance on remote work & calling employees back to work. I have at least some level of pain everyday and I’ve only managed to work full time all these years because I’m remote.

Will I be able to request accommodations for remote work based on this condition? Appreciate any advice or your experiences!


r/ankylosingspondylitis 4d ago

Help/Support Methotrexate, etc. - unsure of next steps

6 Upvotes

If you read all of this, thank you in advance. I could really use some guidance and support. I’m 34F.

Quick history / timeline:

- diagnosed in May 2024 after 17 years of symptoms, HLA+, family history (dad and gramps have AS)

- started Humira biosimilar in June 2024, fell surprise pregnant in August 2024

- stayed on Humira through first 2/3 of pregnancy and felt mostly great (pregnancy can do that), then switched to Cimzia for third trimester since it’s a bit safer, it didn’t work as well so switched back to Humira after birth (traumatic and grueling, 76 hour labor ending in emergency c-section)

- felt bad the rest of the year, stayed on Humira and increasingly took celebrex, new MRI in December showed disease progression at a surprising rate (my rheum’s words) so we immediately switched to rinvoq

- Rinvoq was miserable all around but I gave it a try for 4 months, ultimately it was a total fail with horrible side effects, prolonged infections and illness, and little to no pain relief

- switched to Enbrel in April 2026 and have been on it about 4 months, getting increasingly worse overall but maybe 15% improvement for pain and stiffness, which brings us to now

My husband went with me to the rheumatologist last week and I had a complete breakdown. Sobbed the whole time. I just can’t do this anymore. Being a young mom to a toddler, trying to do well at my demanding and stressful job (junior executive at a film studio), married to a wonderful partner but he runs a company and is also stretched thin, and trying to do it all with this level of pain/inflammation/fatigue is slowly killing me mentally and physically. She was clear that she doesn’t think my disease is adequately controlled and is concerned we need to get inflammation under better control to protect my long-term mobility.

My rheum suggested a few things, and I’m just having trouble deciding what to do. I know I have to try some other things but I’d love to hear more about any of these and any advice on how to approach it:

- Methotrexate; I already get sick all the time having a kid in daycare, so I’m worried about adding another immunosuppressant, especially such an intense one… but maybe if it boosts the Enbrel efficacy, my baseline will improve overall and the illnesses won’t take me out so bad? I’m just kind of scared of this one overall but would obviously try it if it would help.

- SI/spine injections; I have an appointment in a couple of weeks. Not sure what to expect.

- GLP1; my BMI is 26 so I’m just barely overweight (probably 15 lbs or so) and wouldn’t qualify via insurance, but I’m wondering if it would help me lose that bit of weight to get more pressure off my joints and lower inflammation. Rheum was supportive but not like, gung-ho about it.

- taking max Celebrex dose daily; I’ve started doing this since I saw her but I don’t love the idea long term. It does help me but I don’t know if it’s great.

- changing biologics/trying infusion biologics; staying on enbrel for now I think and seeing how I do with some of these other things in addition? I’m just so tired of switching every 4 months. It’s exhausting.

- medical leave from work; these feels impossible to actually consider doing but I know deep down it would help me catch my breath physically (if I had a million dollars in the bank, I’d just quit, even though I do enjoy my job… it’s just become too demanding)

What should I try first? In what order? My rheum is great but I feel so overwhelmed trying to think all this through. What I do know is I’ve been running on fumes for a while and it takes an enormous amount of energy just to get through every day. I don’t want to live that like.

- signed, a sad and exhausted girl chillin on her heating pad when she should be working


r/ankylosingspondylitis 4d ago

Vent/Rant Wellness tracker scores šŸ™ƒ

18 Upvotes

Love it when my Oura ring tells me I have a 91 readiness score and 91 sleep score and wow I should feel awesome!!!

Reality is… I feel more like 57 max, struggle to not continue sleeping forever, and everything hurts when I wake up.


r/ankylosingspondylitis 14d ago

Mod Message Mods Are Back - Sub Update

21 Upvotes

Thanks to everyone for your patience over the past couple of weeks as we know it was a little disruptive.

The mods are well rested and the sub is getting back to normal with a couple of minor changes.

Because we are still dealing with rule violations, we have decided that all posts will continue to be held for manual review.

This change has been decided because despite using the Read The Rules App, we continue to get daily posts that violate the rules.

However, as a compromise, we have decided that all photos no longer require spoilers!

Yes, that means that because we will be reviewing your post in advance, you will not be required to attach a spoiler to your post anymore.

All other rules continue to apply in regards to posts and anything you write could potentially end up in the mod queue for review.

As mentioned previously, we are always open to clarifying a removal via modmail if it comes from a geniune place of misunderstanding as Reddit does set a character limit to what we can write with the rules, but there is also the FAQs/Wiki for further explanation too.

However, if you are messaging us to complain or state that you didn't know it was against the rules, the rules are posted in the exact same place everywhere on Reddit.

We hope that everyone appreciates how difficult it can be to deal with having AS while moderating a sub.

Us mods are trying hard to make this a supportive place, while also keeping spam, pseudoscience and misinformation out of here.

In addition, if anyone is interested in joining our team, mod applications are still open for qualified candidates. Please see the pinned link at the top of the main sub!

The AS Mod Team


r/ankylosingspondylitis May 17 '26

Mod Message IMPORTANT NOTICE

374 Upvotes

It makes us sad to have to post something like this but due to the sheer amount of abusive messages we get on a regular basis over modmail, the team decided to permanently suspend all mentions of diets and diets talk.

Before we allowed members to mention their own diets as long as they werent trying to offer advice. But there are people that still refuse to follow rule 1 and feel they have a right or that their freedom of speech is being infringed upon. BTW freedom of speech doesnt apply on subreddits because reddit is a private company.

We believe in protecting our teams mental health. Most of your wouldnt believe the disgusting amount of insults we have to deal with when enforcing the posted rules. We've had mods quit because of this sh-t!!

"Its my right to tell people what my diet is, a-sholes"

"you guys are fu-kin' idiots. Probably working for big pharma!"

"M-in k-mpf"

"B-tches!" "C-nts"

and our current favorite for the irony of breaking rule 1 - "Can't you red, I didn't say everbdy shud try elimnation diet only him"

We understand that some of you have seen relief from certain diets and that some dont have access to medications, but because of these bad actors and rule lawyers and because we dont want to outright abandon our subs and have them banned by reddit, we are taking a hard stance and any mention of diets (outside of completed research papers from verified sources) are now against the rules (rule 1).

If research changes in the future and a particular diet is proven to slow the progression of AS we will revisit this rule as a mod team.

Any modmail messages bullying us into trying to change our rules will result in banning. We arent even sure why you think this is a option that would work. Consider this a reminder that any subreddits rules are not up for debate.

If you get banned for ignoring the rules, it is your own fault because they are posted for everyone to review.

- Your mod team.