Hi everybody. I'm doing some day hiking at Glacier National Park in two weeks and need suggestions on a bag or hydration pack. My current bag isn't doing it for me. After an hour or two my upper back starts to bother me. I end up needing to give the bag to my wife to take over. We just have a 16L Cotopaxi bag. Now that we may be doing some longer hikes (10-12 miles) we both need bags to bring enough water. I'm guessing I need more support and have straps at the waist too?

I'm wondering if anyone with AS has suggestions? Thank you.

I’m trying to get diagnosed and I had asked my family doctor to do the gen marker test but they refused to do it.

If you have, how have you dealt with it to get it done?

Hi everyone, need some guidance on how things work there and what should I be doing. I sm 24M in India, have been diagnosed 5 years ago and I have been taking Etanercept 25 mg every month. My company is transferring me to the US and I wanna know what should i do? Do i go there get an appointment with a rheumatologist and get him to prescribe me (with enbrel i guess?). Or do i keep seeing my doc in india, take year worth of injections with me? Whats the price there for the treatment and doc fees ? Here its 20$ for the doc fee and 20 more for one injection. What healthplan should i get there? Any help n advice is appreciated

(Reposting cause the bot slapped me. ._. )

Hey anky gang! (I only just noticed the ankylosaurus mascot/theming and am delighted as a dino nerd lol.)

My rheum and I have tried every biologic under the sun to try and get my immune system to calm tf down and get my inflammation down. Humira made my symptoms worse. Xeljanz did things to my GI tract I wouldn't wish on my worst enemy. On and on and on, one med after another, nothing worked right.

He's whipped out the big guns now and is having me give Enbrel a try and I'm going to be honest-- I am petrified. He says other patients with similar medication reactions and sensitivities to me have done great on it, I believe him. But the black box warning has me very, very spooked. I'm sure a lot of it is just new med nervousness and general paranoia but the upped infection risk has me a little out of my mind while I wait for it to ship.

So I come to y'all! Have you tried Enbrel? Are you currently on it? How did it/is it treating you? Have you had problems with recurrent or severe infections? Other side effects? I wanna hear from my fellow ankys so I have a, hopefully, less nervous outlook on beginning this stuff. I really want it to work, I want to finally claw my life back. But a little reassurance (or honest warning) would help a lot I think.

Thanks in advance. <3

Hey. Im reading here and trying to kind of understand what exactly *triggered* my AS.

Myself I have lived a very active life upon early 30s and "always" had some back pain but nothing too serious. Then after a period of influensa and antibiotics it all went haywire in only a couple of months. From workout 5 days a week to nonstop NSAID, MRI, chronic stiffness, fatiuge and eventually diagnosis.

Im kinda thinking I always had something. But that antibiotics or period of influensa really seems to kicked it off from 0-100.

How was it for you? Did it creep upon you or was it something that you think started it?

Hello everyone.
I was diagnosed with spondyloarthritis in April and started on adalimumab biweekly. My pain over lower back has tremendously decreased with adalimumab. Since I’ve peripheral joints involvement complaints, my rheumatologist suggested switching to tabs.

Does anyone have any experience with the tabs so that I know what I can expect? The side effects and how to go about it and such?
I had a hard time trying to adjust with the immunosuppressants initially and it took me 4 months to understand my body and how it’ll work and how the future is. So, any sort of advice or help will definitely be highly appreciated

Simponi worked very well for me for almost 2 years and then suddenly stopped providing me any benefit at all. I was off medication for almost 3 months and without effective treatment for almost 6 months this year. I started Cimzia end of last month, and just had my third and final loading dose on Friday.

I definitely feel a little better in general, like the pain is a little more relenting and doesn't just last all day and into the night. My costochondritis pain has not been nearly as bad as usual, but I'm having a little more pain in my wrists and knuckles. I'm getting some sleep- 7 or 8 hours as opposed to my 3-5 hours when I was taking nothing. But I'm still in considerable pain. My back and pelvis are so stiff every morning; if I wake up 5 am I sometimes feel stiff until 2 pm. When I wake up, it's almost always because the back and pelvic pain will not allow me to lie still for any longer.

After my second loading dose, I felt very tired and slept a lot. I felt much better for about 4 days after. Now I'm thinking that was just a coincidence, but I was really hoping it was a sign it might be working since Simponi also used to be make me really tired and I'd feel much better afterward.

Should I be feeling better than this by now? I wanted to get some perspective from other people who take Cimzia. My nurse seemed to be concerned I didn't feel much better yet and suggested I might need to switch again soon.

I was diagnosed with lupus for years and after not getting any better with treatment and new worsening back and hip pain.. and a new rheum, she said it doesn’t look like I ever had lupus and I actually have spondyloarthropathy. 33f if that helps.

So I feel like my whole world is changing. Ive been under the assumption that I need to avoid the sun this whole time lol I guess I don’t need to do that anymore?

What do I need to know about this disease? My dr just sent me a message in my chart after seeing my mri so I don’t know much yet.

From my understanding spondyloarthropathy is an umbrella and a more specific diagnosis might come later. My cousin has ankylosing spondylitis but we aren’t close so I don’t know much about it. My mom is hla-b27 positive but no diagnosis. We suspect my grandma had AS as well because as she got older her spine significantly curved forward and she lost several inches.

Sorry for all the questions I’m just still reeling and trying to grasp what I’m dealing with I guess

hi, i received my diagnosis last friday (over a phone call..) and will be receiving a referral to rheumatology at my upcoming follow up with an internal medicine doctor. hla b27+ and a buttload of symptoms (some that i’m unsure even fit the bill of ankylosing spondylitis). i’ve essentially been in a near-constant flare since april which is what really paved the way for this diagnosis i suppose. it’s gotten so bad that i have head tingling with occasional numbness that travels down onto my forehead, eye symptoms, in pain every day, and nerve issues/twitching in all limbs. that is all in tandem with joint, pelvic floor, and back issues. saw an ophthalmologist today; was put on steroid eyedrops to at least hold off my eye inflammation until i start real treatment and the doc is hoping it will help my vision changes. i also have a nerve conduction study/emg scheduled prior to seeing my internist due to nerve issues that have gotten really bad in the last two months. i guess i’m just wondering what i should expect now? i’m extremely anxious honestly. i’ve been fighting hard to get a diagnosis for over two years for whatever’s been going on with my health. it really sucks to hear it’s something chronic like this. a big part of me knew it would be chronic due to how long i’ve had symptoms going on, but despite that, hearing my diagnosis is/was hit me hard.

i don’t know, i feel like a downer. any support or tips on how to move forward would be much appreciated. stories on how treatment went for anyone would be helpful too. i’m 21 (about to be 22) and i just feel like my health is already impacting so much. i barely get out of the house other than doctors appointments and the two college classes i take. it’s hard to find friends when i can barely do the few things i have to as it is, and i don’t want to be a burden to anyone off the rip. i wake up in pain, and go to bed in pain. i just want to know there’s a good life waiting for me on the other side of this news, and how to get there.

(i will add that i’m already in therapy and on mental health meds, so it’s not a “dire” situation,,, just needing some genuine help/words of encouragement regarding this diagnosis. pls lmk if i should change the flair though!!!!)

It is hard to find the motivation to work when everything hurts.. The fatigue makes it even harder.

I’ve already exhausted PTO and FMLA for the year.

It makes me sad to even think about starting work every morning.

Is there anything that helps you get through the work day?

Does anyone else with AS experience frequent cramping in the legs? I can't grab my foot if I bend my lower leg up to stretch my leg out anymore, so I have to prop it up on a chair to stretch my thigh muscles. This tends to cause painful cramping on the back side of my thighs.

But by far the most painful cramps I get, are while I'm sleeping. My toes lock up, my feet extend, and my whole leg tightens up suddenly. There's nothing that I've been able to pin down as a cause, and it wakes me up, everytime, without fail.

Does anyone else experience this? I've only ever had these appear in the last few years. I've had my AS diagnosis for much longer. But I could really use some ideas or tips any of you have that have helped, if you're experiencing the same.

I switched from Hyrimoz to Simponi Aria back in January. Starting last month, after a good six months of, "Is this doing anything?", I started to feel improvements, particularly in morning stiffness and fatigue. Right around the start of week 6, though, those issues have started rebounding. Sleep has been more restless for the past week, and today especially, the same old wall of fatigue (probably inflammation triggered) is keeping me in bed.

I've seen other posts on here describing this same phenomenon with the Simponi, with people questioning whether 8 weeks is the right interval for this biologic. I'm curious to hear if anyone else on the Simponi infusion is having the same experience OR, conversely, has actually reached a point where the biologic is experiencing symptom relief for the full 8 weeks.

If your Simponi is lasting the entire interval until your next dose, how long were you on it before this happened for you?

I'm going on holiday and taking my adalimumab with me for the first time. I will be leaving my house at 8am and getting to my hotel around 18 hours later.

I know that my adalimumab (yuflyma) is okay at room temperature for 30 days however there is a possibility that my destination country and where I will stopover en route may be over 25°C so I would rather keep it cool.

Does anyone have any recommendations for light weight cool packs that would last for 18 hours? I am only taking one injection with me. I am UK based so something that is available on UK Amazon would be good.

Thank you!

Ranting and hoping to be understood

My whole life I spent arguing with doctors until finally one listened to me and all she did was order me a blood test and my inflammation markers were off the charts and I was diagnosed from there.

At age 20, after being unable to hold myself up anymore and need crutches or wheelchairs I was diagnosed with AS. I am now 23, and have been on a biologic for almost 3 years (Hadlima). I just got my bloodwork done and i’m seeing my rheumatologist in a couple days but recently I also have some sort of other sickness that doctors cannot figure out again. I’ve seen my bloodwork that was sent to my doctor that i just got a few days ago and my inflammation markers are up again and my legs are bothering me (I lost basically all the the cartilage around my hips and need to get two total hip replacements before i’m 30). They just said they wouldn’t do it at 20 because I was too young and they knew they’d have to replace my hips too many times… but i’m scared. i’m scared this indicates i’m going to have my surgery soon… i know doctors and surgeons know how to do it but i don’t know. sometimes i don’t feel like an adult still when it comes to this stuff, i apologize.

This other illness too is making it hard. Once again i’m a medical anomaly they cannot figure out. I’m due for an ultrasound next week and more tests coming back. Basically i’m frustrated at the world for giving me all these medical problems. I also have scoliosis and maybe something else once doctors figure out what’s wrong with me this time…. sorry for the rant everyone, i am a fighter i swear and ive actually had AS since i was 10 years old but it went undiagnosed that whole time because doctors wouldn’t believe me and thought i was lying about the pain…. im just scared again, frustrated and tired… which i know everyone here can relate to… hoping one of you has some words of wisdom or empathetic support that can be offered. thank you to anyone who actually read this entire monstrosity

I'm diagnosed and have been on treatment for a year. My SI joint pain and neck stiffness is largely controlled. I have pain in my middle back, at the bottom of my shoulder blades, which is made worse with activity. Basically standing or sitting upright without a backrest, and particularly working with my hands in front of me like doing yardwork or dishes causes increasingly bad pain, cramping, and spasm there. The frustrating part is that physical therapy isn't helping, and my Rheumatologist doesn't think it's related to AS because it doesn't fit the pattern (worse with inactivity) and the other symptoms are controlled. My strength is great, but the fatigue is coming on sooner and sooner. I also have long COVID affecting my nerves and autonomic system. Does anyone else have this type of middle back / thoracic spine fatigue?

Hi all,

I got diagnosed with AS when I was 18 years old (currently 24) due to HLA-B27 gene and so far, the pain has been somewhat manageable.

I experience a flare up every 2-3 months which usually lasts around 2.5 weeks and I only get pain in my hips. During that time, it’s not too bad and I’m still able to do day to day things but certain things like putting on my socks, walking for long periods of time or sleeping on my side can pretty difficult.

A couple of months ago, my NHS rheumatologist offered for me to go on biologics to which I declined as I was heavily against the whole idea and said that I will give it some thought.

Having done some research, I am debating about whether to go on biologics. Not because of the pain management but because I’m worried that my body internally could be getting worse and I’m afraid that the longer I don’t take biologics, the worse things will get later down the line.

Just looking to get opinions on whether I should go on biologics or not with my AS experience not being as extreme as others I’ve seen online.

So after 3 years of not only worsening symptoms but more frequently too I was finally diagnosed with AS a couple months ago so still fairly new and still learning about this not so wonderful disease.My question is can flares last weeks or months and what is the longest time everyone has experienced a flare? In the beginning I'd have a flare maybe once a month then it progressed to every couple of weeks.As time went on I now find myself feeling like I'm in a horrific flare daily.Ive been trying to tell myself through the tears it soon will pass but I'm struggling to believe that anymore.I have an app with my rheum on Tuesday to hopefully trial a new medication or biological.Just after some emotional support I guess as I have not had adequate sleep in months.Might be a silly question but does anyone else get liverdo reticularis or raynauds phenomenon too?😢

I think I’ve messed up my biologic shot. I injected, waited for the second click and it didn’t come. I waited a bit longer than usual and then heard it.

On pulling the needle out, it looked like the medication dispensed but just below the skin. I had a raised area - almost like an inflamed insect bite.

Anyway, since then it’s gone down but I have a slightly firm, wide, but flat-ish raised area where I injected.

I don’t care if I bruise - I would just like to know that the drug will work. The pen has locked and it does appear to have expensed the full dosage. I saw some medication leaking from the injection site but not much at all.

I assume I didn’t press down firmly enough.

Anyway, really frustrating. Just wanted to check if anyone else has done the same?

Ta!

Just a rant, I just needed to scream into the void. Here lately, my back pain has gotten a lot worse. I’m on biologicals, but it’s still been worse. Well today my spouse had to work on their car so I went to the grocery store by myself. By the time I got back to my car from the store, I was trying not to cry from pain. My spouse wasn’t home when I got home, so I had to unload too. Now I’m barely moving and now that they’re home they’re frustrated with me because I’ve hurt myself again. They wanted me to leave everything but the cold stuff in the car and they’d deal with it when they got home (which ended up being about 4 hours later). But 1) I didn’t get the message telling me that till I was almost done 2) a lot of it was stuff that could have gotten messed up sitting in over 100 degree weather for that long. My spouse said they try and make my life easier and I need to do the same, instead of doing things that I know will hurt me and there in making more work for them. And I totally get where they’re coming from, cause I’m pretty useless and kinda helpless when I get like this, but it still made me feel like crap. I wasn’t trying to make more work for them and I’m still massively hurting anyway. I already said (before I left the store) I probably shouldn’t make anymore grocery runs by myself. I’m just frustrated.

Hi everyone! 👋

I’m making this post because I’d really love to hear real-life experiences from people with axial spondyloarthritis (axSpA), especially those taking Cimzia (certolizumab pegol).

Travel: Does anyone take Cimzia and travel frequently, especially outside Europe (Asia, Africa, etc.)? Have you continued travelling normally since starting treatment? Do you feel there are additional risks because of the medication, especially if you already have other health issues? Any problems with vaccines required for certain countries?

Surgery: Has anyone had surgery while taking Cimzia, including cosmetic/aesthetic surgery? Did you have to stop the medication? Did you have any problems with infection or healing? Or did you decide to postpone/give up on having surgery because of Cimzia, or have the surgery before starting treatment?

Pregnancy: Has anyone taken Cimzia throughout their entire pregnancy? How was the pregnancy and the baby? Were there any restrictions or delays with the baby’s live vaccines?

Before starting Cimzia: What tests, screenings or vaccines did you have before starting? Is there anything you wish you had known beforehand?

Infections: Have you experienced more infections since starting Cimzia? Do you take any particular precautions, especially during winter?

Your experience: What medication were you taking before Cimzia? How long have you been on Cimzia, and how has it worked for you?

Family planning: Has anyone wanted children but decided not to because of axSpA, the treatment, or concerns about pregnancy? If you’re comfortable sharing, I’d really value hearing your experience.
You don’t need to answer everything — even one experience would be really helpful!

If you don’t mind, please also mention which country you’re from, as healthcare advice, vaccines and travel requirements can vary between countries.

Thank you so much for sharing your experiences! ❤️

For context: I was diagnosed with axSpA about 7 years ago. So far, I’ve only been treating it with anti-inflammatory medication, mainly Etoricoxib (Arcoxia), and it has been working reasonably well for me. In a recent conversation with my rheumatologist, we started considering switching to a biologic, mainly because I’m thinking about pregnancy in the future, rather than because my current treatment has stopped working.

Of course, I know that everyone’s experience is different and that nothing here replaces medical advice. My rheumatologist’s opinion and medical guidance will always come first. I’m simply looking for information and personal experiences — partly to help me make informed decisions, and honestly, to feel a little less alone in the process.

Thank you 🙏🏽

I just had a flare up with my back and finished a prednisone taper. Today my molar suddenly hurts like hell even though I’ve had a root canal. Wondering if an infection was caused from the combo of Simponi and prednisone?

Edit: got exams today, turns out it’s good old TMJ. Incredible how painful it is

Well....it seems the time has come for me to try out a cane. The flares in my hips started about two years ago, they've gotten worse. I've been living with the disease for thirteen years with juvenile onset, chronic remodeling in my si joints. I've got a trip to Japan coming up and as it is now, despite spending a couple months trying to condition myself, I'm topping out at two kilometers before the limp starts, only a click before the pain starts though.

I hate needing it. Does anyone else use a cane? How much did it help? And especially anyone else that is fat? Do you get bad looks? It honestly has me so anxious that people will see just a fat woman using a cane because she's out of shape or something. I know I'm maybe overthinking this but this is the first time I'm putting myself in a position where my disability is visible. And the first time I'm accepting that I really do have a disability and I'm kind of struggling with it.

Hi!

I’m interested in hearing from people who have both Crohn’s and nr-AxSpa, most specifically those who have been or are pregnant/breastfeeding.

I was diagnosed with Crohn’s in 2022 and nr-AxSpa in 2024. I was originally on Humira and switched to Cimzia once my nr-AxSpa symptoms presented and I was diagnosed. I was finally in remission for both in 2025 and got the green light to get pregnant. I had my baby in May and I’m breastfeeding. I was bracing for the inevitable postpartum flare which unfortunately began at 10 weeks pp and has only gotten worse. My baby just learned to roll over and tummy time is her favorite thing to do but getting on and off the floor is excruciating.

I love that Cimzia is the safest biologic for pregnancy and breastfeeding. And it’s the only approved TNF inhibitor for both Crohn’s and nr-AxSpa. The other FDA approved drugs for nr-AxSpa are either not approved for and can worsen Crohn’s (IL-17 inhibitors) or don’t have enough data to be deemed safe for pregnancy/breastfeeding (JAK inhibitors). The thing is, if my health permits and we’re able to, we would love to have another baby in a few years. But I’m worried that due to my limited medication options (unless something else is approved in the next few years), this won’t even be possible.

Please share how long your postpartum flare lasted, if you were able to stay on your biologic during/after your postpartum flare, and any anecdotal evidence related to medication options.

I’m on 5mg/day of prednisone and it’s barely doing anything. I have a rheumatology appointment in a week and would love to go in with an idea of what my options are if I have to switch from Cimzia.

Thank you so much in advance 💕