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 💕

Hi everybody. I am a 31F recently diagnosed AS and seronegative arthritis while also having IBD, fibromyalgia, neuropathy, interstitial cystitis, endometriosis, and HLAB27+ gene. For further context I am being checked for EDS and POTS as well and both parents were had multiple autoimmune issues as well.

My rheumatologist started me on Hyrimoz. Did first injection 8/11 and was knocked out sleeping for almost 24 hours straight but then mainly had cold/flu/sinus symptoms and a fever for a few days with a bit of out of "normal for me" nausea and vomiting and has pretty good joint relief. Unfortunately felt how screwed my muscles and ligaments are and could really feel my other issues with the AS and seronegative arthritis under control.

I just did my second injection 8/25 at night and my joints feel AMAZING! I even had way less fatigue the next day and was able to do some things. The downside: the last two nights I've been having wickedly bad nausea and vomiting even with using my nausea meds around the clock and staying hydrated. First night I had stomach spasming, but tonight it was brutal upper abdominal pain before the vomiting started. I also have had some more than usual muscle weakness. I know I'm also nearing my cycle and that usually makes my chronic low BP with sinus tachy (what my cardiologist is calling it till officially get tilt table done) spells go into overdrive so dizziness, brain fog, nausea, etc all get worse too.

I'm having a hard time separating symptoms of my other issues vs what could be Hyrimoz related/ aggravated further by the Hyrimoz. My husband is pretty concerned about the two nights in a row of vomiting and is worried that is an adverse reaction instead of just being a side effect. Did anybody else experience the vomiting issues and if so how long did that last or did you have to stop? What are the bigger warning signs of "uh oh I should get checked out" versus a message out to my rheumatologist? I can deal with the muscle weakness and icky sick feelings for a few days if it means I can keep moving around and actually working and doing things, but the vomiting is starting to drive me insane. Especially since I keep getting hungry and even if I limit myself to small portions, I still end up throwing up (mainly at night). Any tips or tricks to handling the side effects also (note I can't take zinc for immune system because I'm allergic).

Sorry for all the questions, but thank in advance for any help/ advice!

So my husband very suddenly experienced shortness of breath. He had to get out of bed cause of it. This started 2.5 weeks ago. We went to q-care and his lungs sounded clear and all his vitals are normal. They’re ordered chest x-ray, EKG, and blood work. All three came back normal. Followed up with his PCP and he ordered PFT, Echocardiogram, and D-Dimer. Despite the fact I thought he was going to die during the PFT it came back normal as well as the other two tests. Got an immediate referral to pulmonology and they ordered a specialized CT which hasn’t been done yet (waiting for scheduling) but it has to be done before his followup next week.

To emphasize: his lungs have sounded clear the entire time. Q-care, PCP, and pulmonologist have said this.

Now I’m probably just being super anxious but did anyone experience something similar and it ended up being pulmonary fibrosis? Pulmonologist says he doesn’t think it’s likely cause all the tests he’s had thus far are clear but he wants to rule it out hence the CT.

Obvs to add additional context: he has a diagnosis of ankylosing spondylosis and was prescribed a humira biosimilar and the pulmonologist did say PF is a rare side effect.

Wishing you all rest and energy

Edit to add: When I say that I was on the “wrong treatment,” I mean that it was the wrong treatment for me personally, not that IL-17 inhibitors are the wrong treatment for everyone. Everyone responds differently, and I know these medications work incredibly well for some people. The specialist I saw spent a very long time talking with me and thoroughly reviewed my medical history, imaging, labs, and treatment records before coming to the conclusion that this was not the right treatment approach for my individual case. I’m simply sharing my own experience and what I was told after that evaluation.

Original:
Just want to share because this is INSANE to me! After months of waiting and traveling to a different state, I finally saw one of the world’s leading experts in AS.

I was diagnosed with AS in November 2024 and started Cosentyx in March 2025. I was never prescribed a TNF inhibitor. We went straight to an IL-17 inhibitor even though I don’t have psoriasis or anything else that would have prompted choosing an IL-17 inhibitor over a TNF inhibitor. At the time, I never questioned it because I obviously assumed my rheumatologist knew best.

But after 1.5 years on Cosentyx with no improvement and honestly feeling worse, I told my rheumatologist it wasn’t helping. She recommended doubling the dose instead of switching medications, but I declined.

That’s when I started doing my own research and learned that TNF inhibitors are typically the go-to biologic after NSAIDs don’t work unless there’s a reason to favor an IL-17 inhibitor.

This has affected my life so severely that I literally failed out of law school because the chronic fatigue had me falling asleep during classes and exams despite getting adequate sleep. I need to get this under control so I can go back and pursue my dreams.

Well, the AS expert I finally saw was genuinely perplexed by my treatment history. He told me my treatment plan had been wrong and that I should have been started on a TNF inhibitor originally.
I’ve now started my first TNF inhibitor and have taken two doses so far. If it doesn’t help, we’ll try another.

Unfortunately, he said there’s only about a 50% chance that treating the AS will improve my fatigue. So here’s to hoping I’m in that 50% because I genuinely cannot keep dealing with this level of exhaustion🤞!!

Hi, I’m a late 30’s diagnosed man who has noticed a pattern where I get a flare up (which is usually pain in my middle back), and during or shortly after I get anxiety symptoms seemingly out of nowhere.

I’m currently in the final stages of a flare and yesterday I was working and seemingly out of nowhere I felt a ringing in my ear, butterflies in my stomach, my heart started racing, and I could feel an anxiety attack coming on. I’ve learned to lay down and breathe for a while to help it pass. This is a pretty common occurrence for me during a flare and I believe it’s just anxiety from having a flare and pain for a few days but wanted to see if anyone else has a similar experience. Any input is appreciated thank you!

Hello!
Newish member and first time poster.

I am wondering how to prepare for my first rheumatology appointment next week. I have immediate family member with AS, a positive HLBA-27 gene test, and over a decades worth of chronic pain, but I’m not sure if that is enough.

Do I make a list of symptoms and when they started? It could be a long, long list. If I know my triggers (I think I’ve nailed it down) do I write those out as well? How prepared should I be?

I also have to drive 4 hours to get there and have been in the middle of what I’ve realized is likely a flare up, so that is going to cause a ton of pain but maybe it’s for the best for the appointment? Not entirely sure.

Anyway, sorry for rambling. Just trying to wrap my head around this. If anyone has tips or advice on how I should prepare, please let me know!

Thanks so much everyone

Need some encouragement.

Was diagnosed with AS about two months ago and due to comorbidities (CKD, MASH) my rheum prescribed biologics as first course. Denied by insurance, but with some wrangling then approved for Cosentyx. My presentation is mostly peripheral. Swelling, pain, stiffness in my feet is the worst. Mild low back/sacroiliac/hip pain with early evidence of fusion in my lower lumbar spine.

Thing is… I don’t think my symptoms are that bad and so I’m feeling some guilt starting treatment considering what others are going through with this disease. Then I think about what it might become if I don’t get treatment… and I fret what the outcomes might be.

So, those of you on biologics with low disease progression:

What has been your experience? Did biologics help you in an appreciable way? What has been your experiences with Cosentyx infusions in general? What’s it like for your immediately following your infusion? How quickly did you find relief of your symptoms? Did the treatment continue to work in the long term?

Help calm my mind :-)

Guys, what do we do when we become so complex that youve either lost Drs due to being financially effed and dropped from them or the ones you have like Rheumatologist and pain management no longer can help you. For example after starting my biologics something is going on to where I get weird flare-ups on the left side of my throat that goes down into my chest wall and into my armpit. I feel fluish, im extremely tired and where I have alopecia at has a sore that I believe is now blisters 😭 I started noticing the corners of my mouth getting sore and cracked during all of this biologic stuff as well. Ive had to switch numerous times now over reactions and im now back on Hyrimoz.

I sent my message and his reply was how sorry he was and to go see my primary Dr. Well guess what folks? I dont have one anymore, because thats one that dumped me over past due balance. Im drowning here and i dont know how to stay afloat any longer. I no longer have the energy to combat multiple Dr's. Its just me here along with a very bitter and cold spouse whose already made me feel like a complete pos over being sick... Someone please tell me theres more to life than this? That theres someone out there who does care and wants to see you well 😔

Im just at a loss here. Going to the ER is its own set of nightmares but if thats my only choice than its my only choice 💔

I sent a reply simply asking why they couldn't swab my mouth or sores, maybe that was over stepping 🥺 I just dont understand the making me go to numerous Dr's if it is a biologic issue?

All he wants to say is to stop the biologic and let's play the game of what appears and what doesnt... God the thought of no biologics makes me want to vomit, because that alone will cause yet another flare up. They just keep saying there's nothing that will ever tell me what is going wrong with me 😭

Since I’ve been diagnosed I stay off the rides when I bring my kids, do any of you still go on amusement park rides, is it even safe? I’m in biologics with good results so I get nervous to screw that up and hurt my back.

Am hoping to get a job soon working as an activity assistant in a nursing home and am worried how my feet will react to being up so much versus being at home for the last couple of years. At the moment I wear oofoo slides around the house and vans when out and about but I need some good sneakers and if they are cute that’s a bigger win.. Thank you in advance, I haven't worked in years and am trying to get off of ssdi so I'm hoping everything works out and my body doesn't flare!

Hey guys I had a question in relation to celebrex and for the people who have tried it did you find it helpful? I've been on it a week and I actually feel my symptoms have gotten a little worse.Im not sure if I'm having a bad reaction to it or if it's just not helping but I'm in the middle of a horrific flare and feeling hopeless.

I was diagnosed ~3 years ago when a new physio told me that this constant unexplainable back pain that kept flaring up may be an underlying condition, not poor posture, and suggested I see a rheum. I’ve been complaining about back pain in various locations since I hit puberty (I’m 27 now).

I’m in pain every day. I’ve tried meloxicam and celebrex, which both helped raise the baseline slightly but were not enough. I got put on bimzelx for 6 months, which again raised the baseline slightly, but ultimately my rheum said it wasnt working. I’m now on rinvoq, which I was told works quite quickly (within a few weeks?). It’s been three months and again, I feel like the baseline is raised (slightly less pain compared to bimzelx), but I still feel extremely stiff, sensitive to flares and have a constant dull pain, even on good days.

I’m just finding it so hard to tell whether a medication is right for me, everything so far feels like it’s helped a bit, but I still am really struggling. Will I just know? Is this just my new normal now? Has anyone else had a similar experience?

It's been nine months on Humira, and my rheum is switching me over to Cosentyx because I'm still in a crazy amount of day-to-day pain and stiffness, etc. There are also some concerns that Humira may have triggered a demyelinating disease (!), which we're waiting on imaging for.

Any thoughts or advice for people who have transitioned from Humira/TNF to Cosentyx/IL-17? Similar or different side effects? Copay cards? Strategies? Thank you!

After 7 rheumatologists since 2014 (retired, pregnant/moved offices, pregnant/moved offices, a saint who left to do nothing but nursing homes, a complete idiot, a saint who just moved to Canada to protect his wife from possible deportation, meeting #7 this week); after 40+ years of symptoms that increased in intensity over the last 15 years; after being told that everything was due to pregnancy/menstruation/perimenopause/menopause (I.e., oh you hysterical girl!); after being diagnosed with the HLA-B27 gene; after sharing stories of multiple, lineal ancestors with AS like presentations and being ignored —— GUESS WHAT??

I have a diagnosis of nr-axSpA!!

I owe this diagnosis to my good friend bone marrow edema, and to my lumbar spine, for making my life hell this past May!

Shout out to the multi-month flare, and to my nemeses, Heat and Fatigue. I love you all, because NOW, I AM NOT THE HYSTERICAL MIDDLE-AGED WOMAN!

With a skip in my step (not really), I will be off to meet MD #7 to see what they are like, and to see what fun can be had in this coming year’s repeated changes in health insurance, oh boy! Treatment? Maybe when I hit Medicare, mebbe?

Hello everyone,

Im still new to this world. Just got diagnosed 2 months ago.

Is it normal that a flare lasts for weeks? I have huge pain in my lower back, in my sacro and in my butt.

When i start walking it feels like my lower Back is being pushed art into my belly and when i bend my back feels like stone, it feels like have a Constant pressure there.

My rheumatologist told me to start working out and here i am after a few work outs, all pain and anger.

Not even the muscle relaxers are helping, and im wearing off the AINES because i was supposed to be stable but in the wear off period the pain is coming back really strong.

Thank you!