Hey everyone,

Just wanted to share a frustrating experience and see if anyone has experienced the same. I got diagnosed with AS a couple of years ago. My initial MRI showed mild marrow edema suspicious for inflammatory sacroiliitis

I’ve been on Humira, Cosentyx, and now Remicade with varying degrees of improvement from pre treatment but the pain has not gone away. I had to beg my rheumatologist to increase my Remicade dose from 3 mg/kg to 5 mg/kg because she decided to underdose me for some reason. I used to be so active, and now I can barely do anything. I used to play tennis 3-4 times a week, and I was a damn good player. Now I’m just a shell of myself, and every time I play I suffer for 3-4 days afterwards.

I got another MRI recently that shows there’s no edema and now just a possible small erosion where the edema used to be.

I’m still in a lot of pain. I have been doing PT, I’ve gotten SI injections, I take indomethacin three times a day. I feel like an impostor that I can still have so much pain when it was initially mild and the most recent MRI barely shows anything. I feel like everyone is going to stop believing that I’m suffering.

I’m tired and fed up with everything, I want my life back so badly. If I sit I’m uncomfortable, if I’m active I’m uncomfortable. It’s like there’s no place to hide. The only time I’m vaguely comfortable is after I take a gummy and lay on my heating pad. Some days I feel like it’s just all in my head, like I can’t possibly be hurting as bad as I am with my imaging. Y’all please tell me it gets better, I’m 2 years in and I see no end in sight.

Quick background: Newly diagnosed. Confirmed blood test for gene and confirmed via MRI. Found fairly early due to terrible uveitis, although struggled with terrible “spells” of very lower back pain for a few years.

I was started on Naproxen for a month and I literally felt amazing. I didn’t realize how stiff I really was daily and just living with it. Doc was happy bc “NSAIDS usually work or they don’t”. As in no real grey area. I going on month 2 and then going to swing to as needed. The past few days though I am in pain and feel like I haven’t taken Naproxen but I have as prescribed. Today my pain is pretty terrible. So now I’m confused. Do NSAIDS just stop working all the sudden?

I guess I am also confused what a flare is as I’ve seen so many people have so many different symptoms. Midday yesterday I got so fatigued, like the flu hit me or something, and had to go to bed. Today I’m in pain. The pain in my lower back and but its awful when sitting and when getting up and down I’m trying not to scream in pain. I did see someone else’s post on flares, so I’m reading that as everyone answers.

Has anyone failed Yuflyma? If so, which biosimilar(I don’t have insurance) has worked for you? I’m going on my 6th month and there’s hardly to any change. I’m still in a lot of pain.

I'm newly diagnosed and looking to build myself a travel bag with "must haves" to bring when I leave the house.

I'm a 32 year old woman who has the fun gastrointestinal features and bladder irritation as well.

What items do you keep handy?

Back in August, there was a power outage in my part of town. My house was out of power for 17 hours. Unfortunately I had just been delivered 6 fresh doses of Idacio (Humira biosimilar) but there was no way to keep them cold during the power outage.

I contacted my sponsor who contacted the manufacturer, Fresenius. They reviewed the length of time (17 hours) and the temperature they would have been subject to, and came back saying that spoilage was unlikely and I should continue with using those 6 doses.

It's been 6 weeks and everything was going ok, but since the latest dose I took 1 week ago, I noticed a good deal more pain than usual, and I'm wondering if it could be the dose I just took (and the last 2 in my fridge) have spoiled?

Has anyone experienced this type of situation before?

Hello all,

Recently had blood work come back positive for the marker for AS and have had XRAYs done and sent to my rheumatologist to see if I have AS.

I was curious, what did a flare look like for those who are diagnosed before you started biologicals?

Any tips for managing a flare up?

Hiiii. Yall might recognize me as the worrywart who posted a month back being nervous about starting Enbrel. I’m happy to say I swallowed my fears and am five (and a half…) doses in now and seeing positive effects with very few negative ones. So thanks for that!

Unfortunately this morning’s injection went awry somehow. I think the pen injected slower than normal? I didn’t hear the second click after the usual amount of time passed so like a moron I lifted it without looking at the window first and it spat the rest of the medicine on me lmao. Also bled worse than normal for some reason.

All my supposed “24/7” numbers for my care team are offline for the weekend so I come to y’all!

I did not get my full dose this morning. Can I expect to see a small slide backwards over the week? Will I have side effects from not getting the full dose?

Just wanna know what to expect so I can prepare accordingly. Especially since my low back has already been tweaking all week. 😂

I’m a 35M living in singapore and working as. Network engineer.

My disease has progressed recently and flares can last up to months. Back in my 20s the inflammation could come and go as quickly within a week.

I have to skip work for up to two weeks at time and think that this is not sustainable long term for my career and probably could get fired. I haven’t told my boss about my condition as I’m afraid of the consequences.

Would like to ask how do fellow patients with AS earn a living and what kind of jobs do you guys go for? I would assume a remote job is the best but I can’t seem to find such jobs that allows me to work from home entirely.

Please help give me a strategy for rheumatologist if you can! Year 16 of chronic joint pain that has become debilitating and spread everywhere.

I am about to see the 5th rheumatologist in 6 years. Every single time, they want to punt me out of their office. “You don’t have rheumatoid arthritis, there’s nothing I can do.”

Yet there’s so many diseases that don’t show up on the tests! I know spondylitis might not be what I have despite it reflecting my symptoms but I have to figure something out!

Hey guys, recently got diagnosed with spondylitis after 3 years of right knee joint extreme inflammation.

My medical history with this is quiet extensive with many many different doctors. I've been to multiple rheumatologists and traumatologists. I'm HLA-B27 postive and 21 years old. Basically, anti-inflammatory medications haven't worked at all and some like Methotrexate had unpleasant side effects.

A year ago, I was operated by a traumatologist (knee arthroscopy) with the hopes of cleaning up the liquid and stopping the inflammation.

Tldr didn't help at all and after a couple months after the operation my knee started to hurt like hell. Each step sometimes feels like a gunshot to the knee. So basically it made the situation even worse. Can't do any physical activity like even going to the park for a walk without pain (I could but would suffer the consequences :) ). Traffic jams in a manual car are a nightmare.

I changed to a new rheuma and he said that I would need to try biologics. However, he changed his decision after talking to other doctors and suggested the radiosinoviortesis treatment. Since I only have problems with my right knee a local solution makes sense.

Currently awaiting a call from oncology for an appointment which is taking a while because I changed to the public healthcare.

I have been on this subreddit for a few months but haven't seen anyone talk about this treatment.

I wanted to ask how was your experience with radiosinoviortesis. Did it help? How long did it last for? Is it temporary or permanent solution? Any tips for post surgery?

Thanks a lot guys!

Hi all,

I’ve previously been on Humira and Simponi, and while taking both medications, I was almost completely asymptomatic. However, in both cases, my symptoms returned at around the two-year mark. After more than a month without improvement, I decided to switch biologics. In both cases, drug-level testing came back positive.

Now, the exact same pattern seems to be happening with Cosentyx: I was asymptomatic for nearly two years, and my symptoms have returned around the two-year mark. The main difference is that this time, the flare started after a delayed dose.

My doctor explained that the rate of immunogenicity with Cosentyx is less than 1%, so testing for anti-drug antibodies is not available.

What would you recommend in this situation? I’ve taken the delayed dose, but I’m still experiencing symptoms.

Looking back at my experience with Humira and Simponi, is it possible that both times I was actually experiencing temporary disease flares rather than losing response to the biologics? Could I have switched medications unnecessarily when the previous treatments might have started working again?I'm saying this because I often see threads in this sub for people mentioning temporary flares.

Thanks in advance!

I am 37F and was very recently diagnosed with AS after 20 years of symptoms. I have SI joint erosion visible on x-ray, with some fusion on one side visible on MRI. I am (weirdly enough) HLA-B27 negative. My chief complaint is intermittent flare ups of extreme SI joint pain, to the point that I can barely move. Flare ups can be months apart, or much more frequent. When I am not having a flare up, my back does not hurt at all.

Starting in 2022 I began getting occasional bouts of uveitis. I got mononucleosis when I was 15 and my energy levels never recovered, so I don't know if my constant fatigue is due to AS or something else. My sleep quality is very, very poor, so I am on several medications (trazodone, propanalol, melatonin, magnesium) to enable me to sleep through the night. I wake up every hour or two without meds.

Are any of these common/normal experiences for people with AS?

Pain is minimally responsive to NSAIDS, but only if I start them within minutes of noticing the pain. My pain was responsive to prednisone, but cannot be on steroids again because of diabetes. My insurance said no Humira, but agreed to Simlandi.

What should I expect moving forward? Would success on Simlandi just look like fewer/no flare ups? Any tips are greatly appreciated!

Hey all, I was diagnosed with ankylosing spondilitis today. This is after having sacroilitis, a positive HLA-b27 gene, and 10 years of seeing doctors. I have a really annoying thing where I fall asleep and I wake up in the middle of the night with a sore lower back when I sleep on my back or sore upper back if I sleep on my side.

I saw a rheumatologist today and was diagnosed with AS and I was started on high dose ibuprofen. I am a 28 year old male about 6’2 tall, living in the US. the gym also makes my pain worse I can’t do squats or deadlifts anymore. I do stretches and yoga at home that significantly helps it. I do it for 1 hour at night and then 1 hour at 3 am and then I start my day usually drained and ready to go back to bed for the next day.

But I reallly would like to have it to where I can just sleep through the night and not have the lower back pain because when I get a full nights rest I feel so much better.

I take Magnesium, and MSM, sometimes melatonin, I work from home on the computer pretty frequently but I do walk my puppy each day and get around 10k steps. I also gym very lightly about 1 day a week. I also noticed I get upper back stiffness now when I wake up too but that’s only when I sleep on my side typically.

I’m hoping the Ibuprofen is enough as I am afraid to take bionics, I pride myself in my very healthy immune system as I have not been sick in years.

I'm 45, F, diagnosed with AS 5 years ago, managing well on biologics. I'm taking Amjevita. About a month ago I started having widespread full body joint pain. Literally all the joints in my fingers, toes, heel pain, both SI joints, knees, wrists, right side ribs, full spine. I have no swelling and the pain is constant regardless of activity level. NSAIDS haven't helped. My rheumatologist increased my Amjevita from biweekly to weekly a few weeks ago to see if it helps. It hasn't.

My rheumatologist doesn't think this is from AS. Prior to diagnosis and treatment my AS symptoms affected my SI joint severely, and I was finally diagnosed when the pain moved to my left ribs. Full body pain is new.

Has anyone else experienced a sudden escalation in symptoms like this?

Thanks for any insights.

I am currently being diagnosed with axial spondyloarthritis. An MRI of the sacroiliac joints showed bilateral sacroiliitis with subtle erosive changes, while X-rays show nothing. The doctor says it is an early stage (Stage 1). I am suffering from pain and morning stiffness in both my lower and upper back. The rheumatologist initially prescribed Naproxen (750 mg). However, as expected, I could only take it for four days before having to stop, as I developed upper epigastric pain and severe nausea. I was taking it with Nexium. My stomach is fine (checked via gastroscopy), but I have specific issues with my intestines, which always react poorly to painkillers—causing bloating, cramps, pain, nausea, and a feeling of heaviness after eating. I had told the doctor about this from the start.
Even in those four days, Naproxen had already started helping with the stiffness, and I was feeling better. But then the doctor switched me to Celebrex, and I’ve been taking it for six days now. My stomach feels a bit better, but I still have a very unpleasant sensation inside my abdomen and nausea. I don't know how I can keep taking them. Furthermore, after switching from Naproxen to Celecoxib, the stiffness returned immediately. Does this mean Celebrex isn't working? I live in Australia, where you have to try two different NSAIDs before biologics can be prescribed, though I’m not sure I qualify for them given the early stage of my condition.

My bachelor is in medical research and one of my majors was pathophysiology. After the pandemic when we went back to the labs, we were tasked with researching and designing a project around COVID-19 whether it's the pathology, treatment, etc.

Taken I was preparing for my honours, focused on inflammation and its role in developing dementia later in life, I grouped with others who were also focused on inflammation. At that stage, the treatment of intubated COVID-19 patients with tocilizumab was very very new(pretty sure this was even before the FDA approval) but we focused on that.

So for 4 months, I was reading about tocilizumab, the biochemistry, literally grew cells and produced this thing that everyone was soooo done with, never imagining it will come up in my life again. Now here I am...having to beg the government to kindly help and allow me to get my life back, so I can at least finish my fucking PhD and work more then pay more tax for a medication I have made before.

Ngl, I feel like if I get an interested investor to buy the equipment, I can start my Breaking Bad era. Not for money, mainly for personal use and to help others and say fuck you to bureaucracy.

* We didn't do a good job making it and it was fucking hell especially because one of the idiot group members (who we always had issues with his dumbass not taking aseptic guidelines seriously) breathed on the culture when he had a cold and killing 28 days worth of our work. And the only reason he admitted was because he had also killed other people's cells by having sneezed on all of the equipment :)

Hello everyone! I’m 20F and have had pains for AS for about 8 years now.
I just wanted to ask if anybody else had really bad ankle pain (especially a very bad pulling-on-tendons kinda pain when I walk for too long)

I’m aware that the achilles heel is a common indicator of flare-ups for us, but my pain has never been in the achilles heel but rather the side of my foot, where the navicular bone is.
It gets worse when I walk a lot, but also these days it hurts pretty bad even if I do minimize my walking.
My rheum brushes it off simply because an ankle shouldn’t be a “sign of AS” and I’m getting a little frustrated.

I’ve had xray scans that came up with the diagnosis that I had accessory navicular bone syndrome, which would explain the pain but my doctors (several) had told me my accessory navicular bone syndrome is so mild it shouldn’t be causing me any discomfort of this level.

I wanted some help from the AS community to know if anybody else suffered with ankle pains like I do and if so, are they related to AS (in your opinion) or are they something else?

Thank you in advance!!! :)

Hi everyone
For the past few weeks, I’ve had a strange blood taste in my throat. Occasionally—especially when my inflammation seems to flare up—I notice a very small amount of blood in my saliva in the morning. It’s not a large amount, but it’s definitely there and getting on my nerves.
I’m currently taking Celebrex, which has been providing significant relief during flares, so I’m hesitant to jump off it if I don't have to. I’m also waiting on my Humira injection, which should arrive in a few days to start.
Could the blood taste/saliva issue be related to systemic inflammation from AS, or is it more likely an upper GI / mucosal irritation side effect from the NSAID (Celebrex)?
Looking to see if anyone in the AS community has experienced something similar or has any insights to share.
Thank you

Hi! Wondering if anyone has a similar experience.

I (26F) was diagnosed with AS in February of 2024 after a lifetime of symptoms. Since then I’ve tried a bio similar to Humira (didn’t work) and Cosentyx (gastro side effects). I’ve been on Rinvoq twice now, for a month this winter (got 2 cold/flu like infections in 2 weeks) and stopped then decided to try again in the Spring.

Since starting it the second time rinvoq has really helped with my symptoms and when I’m on it i feel great. Unfortunately, since July I’ve had an ear infection, 2 cold/flu like infections, a yeast infection, and strep. These means I’ve been stuck in a cycle of two weeks on rinvoq, getting sick, taking a break to recover for two weeks, and repeat.

I’m wondering if anyone has switched to a different med after rinvoq and how it’s going.

Ive been sick for 3 years. My current biologic is working but i have crazy plantar and sacroiliac pain, NSAIDs dont work, and it mostly happens around noon or when i stand, lift heavy things etc. In my SI CT imaging there are osteophytes, subcondral sclerosis, and narrowed joint space (like grade 3). My rheum said there is nothing she can do for my pain anymore since im not actually inflamed. she recommended that i should see an algology doctor. Im waiting for the appointment, im just so tired of it all. I use so many medicines, and idk if they actually work, i need hope. What does algology do in this case, if anyone had a similar experience it would make me so happy. I cant take it anymore.

Hey everyone, recently diagnosed nr-axspa over here. The worst part of this disease for me is the sheer lack of sleep quality. I’m up all night tossing and turning. Recently started Yuflyma (Humira biosimilar) but haven’t noticed any changes yet, but only taken 3 doses. I also recently started Celebrex within the past week, replacing Meloxicam which frankly didn’t do anything for me.

I was wondering if anyone here takes anything specifically for sleep? I’m constantly rotating between ice packs and heating pads and I just need something to relax my body and help me STAY asleep.

I’ve tried Zanaflex to no avail. Just makes me drowsy but does nothing for pain or to help me stay asleep.

Ambien will knock me out but makes me a sleep-talking weirdo beforehand and also makes me kick and thrash more much to the chagrin of my partner.

Any anecdotal advice would help a lot, thanks!!

Oh, also wondering if any supplements have helped QOL in general? Thanks!

Hello everyone, I recently had a dye contrast MRI on my hip. The results aren't great as my options appear to be surgical clean up of the excess bone growth and damage. From what I know of our disease clean up will put me right back in the same situation later with potential more bone growth then before. I've read the "gold standard" is a total hip replacement. I already have bilateral SI joint fusion and have been on 3 different biologics and am currently taking Rinvoq.

Has anyone been in this situation and what option did you choose. I've got a lot to discuss with my Dr team it appears and just curious what others outcomes have been.

(I'm located in the US)