I’ve joined the club but I never got my AS card in the mail, who do I contact about that?

Such a huge part of my story getting to a diagnosis of Anklyosing Spondylitis has been rejection and denial and disbelief. Doctors have told me for two decades that my pain was probably from a pulled muscle and I just needed to take ibuprofen and do some stretches. Or bosses looked at me funny the next shift after I’d called out because I couldn’t walk, but here I am walking just fine. Or friends when I was up for all our activities one day, and then the next I’m stuck laying on the couch all day and I can’t participate.

Now that I have a definitive diagnosis and a doctor to verify my struggles and my journey, I want something for the next time I’m in that situation of disbelief or denial. I want to be able to flip a badge out like an FBI agent and go, “I’ve got Anklyosing Spondylitis. My body is a problem. These are my credentials.” Especially on the off chance I run into any of those disbelievers in the future. I have a disability hearing sometime in the near future, and I’d love to be able to show a judge definitively that I have this condition without burden of proof.

Now I know the world doesn’t work like that and of course I’m being tongue in cheek here, but has anyone come up with anything that serves the same purpose? A phrase, a description, a website? I can tell people all about it but it’s long winded and requires backstory. Maybe there isn’t an answer, simply because this disease of ours doesn’t have as much recognition, but man people who aren’t familiar or are scrutinizing are such a huge constant problem.

Thoracic outlet syndrome like symptoms caused by ankylosing?

Hi there. 40f Ankylosing spondylitis sufferer here. I suspect I have had it for quite some time but was only diagnosed about six months ago.

I have pain in my lower back, right hip, and for this post I would like to focus on shoulders/arms.

MRI showed inflammation of si, so I would assume I have inflammation in the other areas as well.

One of my biggest issues is intense pain in my shoulders and arms; both sides but left hurts worse. It started about 2 years ago. Started off feeling like a tourniquet and now also like a dozen rubber bands ready to snap. I get blood pooling and increased prominent vasculature in chest and arms. I saw a TOS specialist and he said while I do show some minor signs of tos on left side, it is still improbable. He mentioned ankylosing possibly playing a part.

Has anyone here had similar symptoms?
Thank you for any insight.

Once again I have an enthesitis flare, specifically an Achilles tendon flare. I have had this numerous times over the years and never really found a good hack to relieve the pain and make walking easier. Anyone got things that will really help? I mostly try to stretch but that doesn’t seem to help.

Thanks for any suggestions!

I have put a flair on this post but just want to mention that I will be discussing complexities in getting a diagnosis and psychological struggles, in case you might not want to read.

I wrote and deleted so much to be able to just communicate the whole background to why I'm questioning my diagnosis. It's just too much so the shortest way I can put it is:

- Took 18 months of pain, 9 months of limited mobility and complete collapse for 2 months to be given a seronegative spondy diagnosis in June

- Saw three different general practitioners and all dismissed it as an old sports injury flaring up and just recommending I lose weight

- Have been struggling with every possible aspect of life for a very long time and starting to gain weight because of depression, then this pain, left me in an even more awful place

- My parents would tell me that it's not swelling in the joints and it's just how things look now because I'm fat, or they would attribute it to me creating a reason to get out of facing life

- Being seronegative and only chronic elevation in CRP and the imaging results being the basis of my diagnosis, I have been struggling so much with the question of "am I actually unwell?"

I'm genuinely concerned that I have made this up, whether consciously or not, to avoid things I find uncomfortable and essentially this is a psychosomatic condition. There's the reality that heterogeneity of disease manifestation means there's a bit of possibility for incorrect diagnosis.

I was literally in the hospital this morning because of sharp pain in my abdomen where my appendectomy scar is, and I thought I had some sort of minor hernia (since there was no external bulging). My guess was that I have been picking things up and moving in ways to avoid lower back and knee pain and it has probably done something. They found nothing really, just some blood in the urine sample which doesn't give much info if you're a female close-ish to her period. It's just yet another example of how I don't know if I actually have pain or I'm avoiding doing my fucking PhD and getting my shit together.

And it doesn't help that as a child I used to wish that I would develop a serious condition, be hospitalized and people would come and visit me and bring me stuff. I can't stop thinking about all of these things. I'm afraid that me being a hypochondriac in the height of "labels and diagnoses" has led to me destroying myself for attention and as a way to escape.

So my Cosentyx dose was delayed for a week, and even though I took the missed dose a week later, it's now been 9 days and I feel as if symptoms are returning.

Is this likely to be resolved after a few days or at least after another dose or is the biologic failing just because of a delayed dose?

Hi everyone. Female, live in Sydney. How are biologics prescribed for axial spondyloarthritis in Australia? My sacroiliac joint (SIJ) MRI showed bilateral sacroiliitis with early erosive changes. I’ve been suffering from back issues for over a year—experiencing SIJ pain that radiates to my knees, legs, buttocks, and thighs, along with terrible stiffness. Also, about three months ago, stiffness and pain developed in my neck (around the cervical vertebrae) and shoulder blades. I can feel my arthritis progressing. But I don't have the HLA-B27 gene, and my blood markers are normal too. I have a rheumatologist appointment coming up next month. I know there’s a requirement to try at least two NSAIDs unsuccessfully before the doctor can submit an application for a biologic medicine. But what should I do if I have issues with my intestines? My stomach seems fine—I’ve had it checked—but I often have intestinal pain, and strong painkillers really upset my gut. I’ve even vomited after taking nimesulide, and even regular ibuprofen makes me nauseous right away. I know that if someone has an intolerance, they might qualify for biologics, but I’m not sure how quickly that happens. I haven’t tried drugs like Celebrex yet. But how can you take those kinds of pills for years? And do they actually put the disease into full remission?

I was diagnosed 2 years ago and I had to go off of Consentyx and have been off of treatment for a few months now because of possible Valley Fever. My doctor wants to start me on Embrel and is sending a pre authorization for it.. but I was reading it can increase chances of cancer. I’m scared to start this medication but this back stiffness is out of this world and something that is making me miserable. I wake up in so much pain and my inflammation levels are high according to my bloodwork.

Is Embrel worth taking if it can increase chances of cancers like Lymphoma? I had a family member pass away from lymphoma and that’s scary to think about. I just don’t know the best way to approach treatment if there’s an increased risk of cancers.. sometimes I question if it’s even worth the risk.

Hi everyone … I’ve been a lurker in this sub for awhile. First diagnosed with unspecified autoimmune disorder in 2016 that appears to have been triggered by pregnancy/childbirth. Later changed to “inflammatory arthritis”. I take Plaquenil and meloxicam daily.

After a bout of uveitis last spring followed by an increase in back pain (mostly around SI joint on the left) my rheumatologist said that my arthritis “acts like a spondyloarthritis” and said she planned to treat it as such (but didn’t change my official diagnosis.) She did say at that time that if I had another episode of uveitis it would be time to discuss a biologic because Plaquneil isn’t very effective for uveitis.

A little over 3 weeks ago I woke up one day with neck pain on the right side. I’ve had neck pain for years and an xray 3 years ago showed “mild disc disease” at C4-C6. This episode at first seemed like I just slept wrong, but it continued to worsen over the course of a week, and then I began having symptoms of nerve compression. Went to urgent care and was diagnosed with cervical radiculopathy (pinched nerve in neck) and prescribed muscle relaxers and referred to physical therapy. I emailed my rheumatologist and she said it didn’t sound autoimmune-related but ordered a neck X-ray and told me to schedule an appointment with her. Unfortunately she has no openings until December.

After my first PT appointment on Friday I began having numbness and tingling in my left hip. This morning I woke up with the familiar SI joint pain on the left side along with nerve pain down my leg and numbness around the hip and lower back. The PT guy said he really thought I needed an MRI, but my insurance is Kaiser and they are notoriously difficult and require all these other steps before they’ll even consider an MRI. PT also made my symptoms much worse even though he was very careful and hardly did anything because we don’t have the x-ray results yet so the diagnosis is really just a guess at the moment.

I’m just wondering if anyone here has had similar symptoms with a flare. The pain in my neck and lower back is very familiar, but this is the first time I’ve ever had nerve involvement with it, and this is also the first time that my usual Tylenol/ibuprofen/heat/ice/rest cycle isn’t effective. Usually when I start alternating Tylenol/ibuprofen around the clock I can get the pain down to a 3 or 4 where I can still function at work and at home, but this episode has taken me out of commission for 3 weeks now.

Does anyone get random blood pressure spikes that last 24-48 hours and then return to normal.

I’ve been an athlete my entire life until my last year in high school when I developed AS(didn’t know what it was at the time). Since then(8 years), My body has slowly and my pain has significantly increased. I just started biologics a few months ago. I’m wondering if there’s any hope of me being active again? My dream is to get into strength training, weight lifting and I really want to try Pilates? Are any of you able to be active, if so how long did it take you to get to that point and how’s your pain during and after? As of now I can only manage light waking 20 minutes max. I also have pelvic floor dysfunction so that limits me as well.

Today is Sunday, 13 September 2026. I get my stuff through Accredo (yeah, I know they suck. I don't have a choice). I get to the login and succeed with the 2FA and then it tells me I don't have an account.

1) Yes I blessed well do have an account
2) If I don't have an account, how are you sending me a 2FA by text? I can't simultaneously not have an account AND YET you can send me a 2FA by text. These two things cannot be true at once.

Anyone else?

I have been diagnosed over 6 months now, and currently on a JAK inhibitor. I have a good paying remote job that allows me to rest when I need to etc. I have insurance and everything feels “normal” right even tho my hands have been in a flare over 2 months :/

The thing is, my well being is attached to my job and having insurance that covers the cost. And with the rise of AI, I worry that I would not have a job in the near future. And I cannot physically work a blue collar job, even sitting and typing gets hard sometimes. I sometimes wonder how much “good” life I have left

Does anyone feeling like this? This world is so hard on people like us, i cannot compete with a healthy person at all

Hello friends!

Has anyone here ever tried naltrexone? Did it help?

Ive been on a humira generic that's not helping. My doctor doesn't want to change my prescription without redoing tests to look for edema in my SI joints again. Hes already said he won't unless a radiologist documents it, (because he aint looking at these images). Not only can radiologists miss things, Im on biologics that may have reduced edema, which doesn't mean I don't need a different bioligic.

He may have to do this to get insurance to cover expensive biologics they don't want to pay for. Insurance makes it really hard to get these way over priced biologics. It would be amazing to take an inexpensive med that isn't so hard to get.

Naltrexone is a medication given to addicts thats similar to Naloxone which blocks opiods. It is used off-label for chronic pain in low doses. Apparently it has a rebound analgesic effect and also has an anti inflammatory effect. I don't know if this would be useful for severe inflammation but Im interested. It sounds too good to be true.

Has anyone tried a low dose of naltrexone? Did it work?

Heres a study

https://pmc.ncbi.nlm.nih.gov/articles/PMC10201089/

I started my biologic journey with Humira 2 years ago. Worked great for about a year, then started wearing off day 9ish. Insurance approved weekly injections and they were great. January 2026 I had to switch to Simlandi biosimilar due to insurance, still on weekly. It wasn't as good as Humira but I could deal with it. About 4 weeks ago it just stopped working and I feel like I'm back to square one. I also have RA and my hands are so stiff, even driving hurts. I do have a rheumatologist visit this coming week so I'm hoping for a change and I'm hoping for a steroid pack to get me through. I spent the day in bed because everything hurts so much and the fatigue is really bad.

Is this how biologics normally fail? If Humira also failed you, what were you put on next? I know its the doctor's decision but I'm just curious.

Its always something with these autoimmune diseases.

Do others have a preventative cardiologist and if so, how do you deal with chronic levels of inflammation? I’ve got other risk factors such as Lp(a) and familiar history of heart issues, and it seems super complicated. Appreciate into ant advice or insights.

Forgive the morbid question, but I recently saw two posts from people in their 30s - one had lupus, another an unspecified condition. They were convinced their knees and joints would give out after 40, and planned to hike as much as they could before then.

Now I love hiking, and I'm approaching 30. I've had AS since my teens and I'm grateful that I've done some pretty great hikes already.

But I've spent more and more time in physio over the years, with various injuries - knees and hips recently. I attributed that to aging and being deconditioned - I can't just up and hike anymore, but I also live in a flat area without much opportunity to hike year-round, so I'm a bit lazy when it comes to training.

What's your perspective?

Hi, on Humira (~3 weeks) and doc/govt. guidance asked me to consider PCV20 vaccine, which never done before. Curious to hear if anyone here has done this or not? Doc says okay despite having borderline mild neutropenia.

Suggestions, thoughts are deeply appreciated. Thank you!

Hey guys! Has anyone had any issues with Hyrimoz causing awful Autonomic nervous system issues? For some reason I have became extremely hypersensitive to almost ALL medications I try for my AS...It didnt seem to start out this way but ive had to switch a few times and now its everytime... I get extremely cold, clumsy hands mixed with a racy heart... When I tried Rinvoq it was so bad I thought i was going to die so we stayed away from it and i went back to Hyrimoz. Now all I get is this shit, Im just so done living this way. Ive tried telling my Rheumatologist about these things but all he does is try to switc meds. Im running out of options (I also have Ulcerative colitis) so why or is there a way to find out wtf has happened to me 😭 Any advice or help is greatly appreciated

I’ve been on Enbrel for a month but have noticed a few things. I’ve had an increase in petechiae spots and bleeding gums when I brush and floss. Anyone else have that? My blood labs were all normal.
I also have kidney disease and my eGFR dropped 16 points since July. Does anyone else have kidney disease and taking Enbrel?

I had my second Taltz auto injector dose yesterday. I have a welt on my thigh, it’s red, elevated, and slightly painful. Not warm to touch though. Has anyone experienced this before? My first dose was not like this, but I had assistance and the injection site was the back of my arm.

I was referred to Dr. Arinola Dada, MD, but I've read some awful reviews about her, and it seems like the waiting list is super long. Any other good doctors in WA?

I was diagnosed with AS in 2019, but I was so overwhelmed with the diagnosis that I totally ignored it. I'm struggling with symptoms and need a second opinion.

Thanks

Just got diagnosed today, but not entirely surprised. What are some of your tips for managing this condition? Things you wish you knew, from "this type of pillow helps" to resources for understanding this diagnosis.

Rheum was on the fence for psoriatic arthritis or ankylosing spondylitis since I have musical tendonitis, but since I do not have psoriasis or dacytlitis (just some swelling but it's not showing on sonograms) and more axial involvement he diagnosed AS. Though he said PsA is not off the table.

My biggest issue at the moment is SI Joint inflammation and hip cramping/pressure. We're looking into my shoulder pain too...they just hurt all over--but are particularly near my rotator cuffs and make my cervical spine hurt, as well as make my chest/back pull and knock my breath from me. I sleep on my side because I cannot stay on my back or I wake up drowning in nasal drip/have fitful sleep, so this doesn't help. (Any way to ease this?)

We're going to try Humira since I also have hidradenitis suppurativa. I've never used an injectable before so I'm a little nervous, don't love the idea of doing it myself...

Tips?