People who had it back when or know people who did, what would you say. Has research and treatments advanced much since then? What are the biggest differences would you say?
Thank you to everyone who answered my last question about biolgics! I think I am ready to take the leap! But I have one more question. I am an elementary school substitute teacher and I was wondering how this school year is going to go if I am on an immuno-suppressant. Seems like I already catch everything and it takes me a full month, if not a bit longer, to recover if it was a respiratory illness. What has been your experience? Thanks!
I’m 2 months postpartum with my second baby. I have a 2.5 year old little girl along with my 2 month old. Safe to say life never slows down. My AS was in remission for most of my pregnancy and I had high hopes. I had gone outside with my toddler over the 4th of July weekend and we used sponges and soap to “clean” a bunch of stuff on the patio. I did a lot of bending and lifting that I probably shouldn’t have. Since then, I’m physically unable to get up and down the stairs in our house. I’m literally stuck on the second floor bc my SI joint is so painful I can barely walk. I’ve been glued to a recliner for 2 days straight and I’m going crazy. I cannot live like this. My husband is having to bring me bottles to feed the baby along with food to feed me… I’m on biologics. They don’t do a thing. NSAIDS aren’t working. I have a support band that doesn’t do much good either. I’ll take any unhinged tips to help this go away along with any support or advice.
My blood test for HLAB27 had the result as ‘indeterminate’ and I was initially told I don’t have the gene. Turns out that test was done using the Flow Cytometry method. My new rheumatologist asked me to repeat the test using PCR method, and that came out positive.
Yea guys I was diagnosed like a year ago. Idk it was eight after my 29th birthday and you know I kind of didn’t want to bring all the limping.. slurring.. pain.. etc with me into my 30’s. Add in I was also getting some gnarly lightheadedness I needed help.
Yep so went to see a rheum and as much as I want to say I was instantly better.. well no. I had medication but the shit started making me depressed. Add into that it wasn’t even helping my symptoms yet and I was to the point where I was like this is some bs I’m just going to give up..
Well I didn’t bro
And today is amazing. You know my meds take care of probably 60% of the stiffness. But as was clearly visible in the x ray and MRI I have a lot of mechanical changes… add to the fact over years I’ve been guarding and it’s like sometimes I feel I don’t know how to use my body.
Enter yoga.. it’s literally a godsend. But it’s not an overnight thing. This is over years and years. Like initially when I got symptoms it was my medicine (I was just wondering why I had to do hours of intense stretching every day to have slightly less limp).. so yea I need my actual meds.
But yo.. when my meds were starting to kick in and I was feeling better physically I was still depressed so I wasn’t even doing yoga. I felt ok and man I saw the potential but I wanted to feel good…
Enter yoga again. I finally started feeling a little better and got deep I mean deep into it and I feel like it’s the magic key that fully unlocks the potential of my meds.
Yea I still feel the pain.. the tightness.. whatever. But man do I feel SO MUCH better with it than without it.
Just had to say that to my fellow people that get it.
Hi there, my bf was diagnosed with Spondylitis a couple of years ago and has been on and off on Cosentyx therapy. The first time he tried it, he suffered from stomach issues and had to stop after 3rd dose. We are in europe, getting appointments takes time and by the time he got checked by a specialist, his symptoms were gone.
Last year he started Cosentyx again but had to stop after 5 doses, again because of stomach issues. His symptoms include stomach cramps, gas, bloatedness, pain, irregular bowel movement, thumping and cribbling sensations. This time he again got a specialist appointment 2 months after he had stopped the medication and his symptoms were gone by then. The endoscopy and colonoscopy indicated slightly inflammed stomach lining but pathology was clear and doctor did not give any diagnosis.
Has anyone experienced similar issues with Cosentyx? Rheuma hospital says that no one has ever mentioned stomach issues with Cosentyx to them 😐...help please!
I just found out my Cimzia copay assistance has been exhausted for the year. My insurance leaves me with about a $1,200 copay every month until I reach my $2,000 out-of-pocket max. My deductible has already been met.
The last two years, the copay card covered everything without any issues, so I was really surprised when they told me I had already hit the annual maximum after only 7 months.
I called the Cimzia copay program, and they said they can’t add any more funds until next year. I also called my insurance, and they weren’t able to help either.
I took my injection today, so I have about 4 weeks before my next dose is due. I’ve already sent a message to my rheumatologist and am waiting to hear back.
Has anyone else had this happen? What did you end up doing? Did your doctor have samples, was there another assistance program, or did you have to pay out of pocket until you hit your out-of-pocket max?
I’m just feeling really overwhelmed right now and would love to hear if anyone has been in a similar situation.
Or am I just going to bounce around trialing different meds forever feeling like shit full side effects?
2-Week Follow up
Post-Op History: 50M / \~37 years of AS / on biologic for the last 10 years
This is my 2-week update on the left hip resurfacing. Second side, three months after the right, same surgeon and same hardware. Earlier posts covered the prep and the first couple of days. I am focusing this one on recovery outlook, the issues that came up, and how I am managing pain, since those are the questions I usually get.
Recovery outlook
Had my 2-week check today. Both hips look good on X-ray, the incision is healing well, and I am cleared to drive when I feel up to it. The 90 degree flexion restriction comes off at 6 weeks.
The PA told me this was one of the most difficult resurfacings he has seen. Part of that is the anatomy, fused spine, deformed joint, large osteophytes. But the biggest factor was probably that my muscles did not fully relax during the surgery. General anesthesia on its own does not relax muscle, it needs a separate agent for that, and it sounds like that piece may not have been fully dialed in. On an already stiff AS body, muscles that will not let go make delivering and reducing the joint a lot harder, which is where the hard pulling came from. It was good to have that confirmed, because it explains a lot about how the recovery has felt, and it is one more reason to take anesthesia planning seriously if you have AS. It is not just getting the block in, it is making sure the muscle relaxation is enough for the surgeon to work. He also said my hip flexion contracture has no mechanical block. It is all soft tissue, maybe some spinal restriction. For me that is the best possible news, because soft tissue is trainable. There is real range to reclaim, not a wall.
Issues
The biggest one is soft tissue strain. To do the surgery they dislocate the joint, pull the femoral head out, do the work, then force it back into place. On a stiff AS body that means a lot of hard pulling, and the PA confirmed that is where my early pain came from. I have felt it as a deep strain around the hip that refers down toward the knee. It is tissue pain, not joint pain, and it is slowly settling.
On swelling: it is down from about twice normal at day 2 to maybe 15 percent over now, and that drop is exactly when walking finally started to feel normal.
Pain management
Still no narcotics, same as the right side. I did not need them. I ran combined Tylenol and ibuprofen for the first two weeks and I am now tapering. Dropped the Tylenol, down to ibuprofen only, stepping it down over the next couple of weeks. I am keeping the ibuprofen going a bit longer on purpose because it doubles as heterotopic ossification prophylaxis. With AS I am more prone to HO than most, so I do not want to drop the anti-inflammatory too fast.
Overall
Two weeks in, I feel good about where this is going. Same lesson as last time. The early wins are small and it is a long game, but the small differences stack into something real over months. A difficult surgery with a clean result. I will take it.
I will keep posting as I get further along. Hope this helps.
I just sent my letter of resignation and it sucks. I am a therapist and I just cant meet the physical demands of a full time job that requires back to back clients sitting all day. I hate it, and I hate knowing that if I was supported better in the workplace I could have actually stayed. I am uncertain that I will ever be able to do anything full-time and it's upsetting because I have always been extremely productive. Feeling like a failure right now (I know I'm not just having a pitty party), I feel like my workplace won the dont want to accommodate disability game, and I just cant wait to retrieve my shit from the office and hopefully avoid a flare from the stupid stress of it all (was shaking writing the damn email).
37yo female. diagnosed with nr-axSpA in 2024. Treating & managing with Cimzia and weight training.
Experiencing a minor flare currently that started the morning of the 4th. So any movement especially after any bout of rest is not great. While the pain is exponentially less than pre-diagnosed; after seeing where this disease lands on a pain chart I do whatever my body needs to push through, including sometimes standing up like a senior citizen.
Well yesterday was one of those days where I had an aunt give me the “yOur yOuNgEr tHaA mE yOu can’T HaVe BaCk pAin.” spiel. And even my Dad asking what was wrong.
Trying to articulate to friends and family the severity of this disease especially when it comes to pain is just frustrating and tiresome. This isn’t just arthritis. This isn’t a sore back from sleeping wrong.
I snapped at my Dad mostly because he has seen me pre-diagnosis and even asked me the question at one point of “what are you going to do when you’re 80”…so when I was finally able to share with him the diagnosis he would understand it’s not an injury or a fluke. And he’s been the type of Dad who researches and is always on the internet reading about anything & everything. So him not taking the time to understand this battle - and continue to ask pestering questions especially after the comment from my aunt has just got me more frustrated at this disease than ever.
Do I want to move like an elder? Fuck no. Do I want to live everyday day always in some slight fear of is today the day I get my next major flare? Absolutely not. But what do I want to absolutely not have to do anymore? Someone in my circle understand what this disease actually means & carries. Because apparently having to give myself injections twice a month means it can’t be that bad.
Rant over. Thanks for reading.
What led you to dignosis?
Hi,
I'm 32f, and i got diagnosed with AS about 3 weeks ago. I also have endometriosis.
I have had considerable pain in my lower back and SI joints for a while and got diagnosed based on MRI and inflamation. Usually i use heat pads to help with the pain, try to walk, work out regularly and avoid staying in one position for too long. I am waiting for biologicals to arrive at my local pharmacy so i can start these. I hope that will help too.
However the past few weeks, temperatures have been really hot (30-37° celcius). I had an awful week when it was this hot. I had a lot more pain, also couldn't sleep properly because the bedroom was too warm, so had to sleep in my living room on the couch, which probably made things worse for my pain.
Next week they predict again the same temperatures like that for over a week, and honestly i don't know how to do this a second time, especially while working full time. At home and my job, there's also no airconditioning available.
So if anyone has any tips on how to make it through these heatwaves, i would be so thankful!
I have been bench pressing for a long time - and have increased in strength - but I am a looking for more methods to prevent soreness especially in shoulders.
Any suggestions are appreciated!
I have severe HS (Hidradenitis suppurativa) and it most likely caused my AS (at least this is what my my derm specialist hypothesizes) Does anyone else have HS that could have led to the progression of AS? I am brand new here and have been diagnosed with HS for 8 years and AS for 5. My AS had progressed so far that they immediately caught it with an xray and told me I had bamboo spine. It was terrifying and it is still jarring to see doctors reactions when I tell them I have AS. I’ve felt like such an imposter with my pain since it has been diminished so much of my life and stigmatized. Especially with HS since it is so embarrassing, and has only recently been getting more awareness.
Sorry for the rant, I am just so happy to have found a community with people who understand!
I've been getting pain in the tendons (I think) on the outside of both ankles and running up the outside of the shin. Happens when I extend/point my toes. Is this common? I know most tendon pain in the foot is either the Achilles or plantar fasciitis. I haven't read anything about the outside of the ankle.
I get infusions every 6 weeks, and cant do it sooner, so my Rheumatologist put me on methotrexate, a shot, but I have not started it yet cause I waiting on some pills so I don't get mouth ulcers. Has anyone been on this drug, and how does it help?
Hi all,
Like many reading this subreddit, it took many years for me to be diagnosed with my specific flavor of SpA. I am 36 years old, male, and I grew up with a diagnosis of Crohn's disease. I was diagnosed with Crohn's when I was 12, and I was in and out of the hospital with flares until I was 17.
Flash forward to 2022. I had been off of any treatments for crohn's for 10 years, and I was living my life successfully. I was an ultra-distance trail runner, I had been a cyclist for a long time, and through all of this I didn't have any relapses of Crohn's at all. I legitimately thought it was gone.
I got Covid in June of 2022, and all of a sudden I was experiencing injuries and issues with my joints. First it was intermetatarsal bursitis in the left foot, then left ankle swelling for no reason, then knee pain and back pain.
From 2022-2025 I was a spectator of my own physical ability's disappearance. I started having bad TMJ issues, upper back (cervical) pain, hand swelling, bilateral foot swelling, and eye problems. It really felt like I was falling apart, at times, and I never once considered my Crohn's could be implicated.
It wasn't until the same bursitis I had gotten used to in my left foot showed up in my right foot that I started looking for a bigger solution that would explain more than just foot pain. I had a good talk with my orthopedic doctor, and she referred me to a Rheumatologist. I was lucky to get into the Rheumatologist within about 2 months, and she listened to my entire story and diagnosed me with Enteropathic Spondyloarthritis. I'm currently waiting on an MRI to find out if the back pain I've lived with for a few years represents Axial SpA, or whether my disease is primarily peripheral.
So here we are - I'm HLA-B27 negative, which I understand is actually the common presentation for IBD patients. My ESR and CRP have always been normal, even when I was a kid. None of my biomarkers are out of range, and yet I can't even do 10% of what I used to be able to do.
Some days I can hardly walk around the block with the dog, and other days I feel like riding my bike. Some days I have severe pain in my legs and feet when I get out of bed, and other days I feel somewhat normal.
My athletic background came with the lived experience of injuries that heal, fatigue that improves with rest, and musculoskeletal pain that can always be attributed to what I did yesterday. And for the last 4 years I've been operating under those assumptions. I didn't connect all of my symptoms until the right foot started to deteriorate.
Are there others like me out there? IBD-first, but in remission, and with predominantly peripheral symptoms, and HLA-negative? If you have any of my same experience, I'd love to connect. I still don't truly feel like I deserve biologic treatments, even though Remicade is what got me into remission with Crohn's. I am in this weird place of my diagnosis where I kind of want to have axial involvement visible on the MRI so I can connect more easily with some of the stories I've read here. My case doesn't feel as significant as many of yours, but I have to remind myself that I can't do what I used to be able to do, and that deserves treatment. I can easily gaslight myself like this into oblivion, so I'm reaching out to see if there are others like me. I'm sure there are, and I'd love to share stories and experiences!
I'll be starting biologics in a few weeks (not sure which one yet), and I am hoping to be able to come back to this thread with a big "edit: I'm better!" addition, but for now I'm in the waiting room.
Thanks to all who share - I do feel connected to this community just from reading stories, and that's one of those things about the internet that still gives me hope.
I just started cosentyx after using both Humira and simponi and the auto injector for this brand is PAINSTAKINGLY S L O W ˙◠˙
Posting this on the off chance that someone that works there trolls this group… FIX IT. PLEASE.
I've read about Car T Therapy, which is used to treat blood cancers.
Early clinical trials are exploring CAR T therapy to "reset" the immune system in autoimmune disorders. It sounds promising. Could it help AS-patients in the future? What do scientists say about that?
Is Car T Therapy someting that could become reality for people suffering from AS? Both who are HLA-B27 positive and HLA-B27 negative?
Is there hope for people with this condition that breakthroughs could lead to drastically improvements that could eliminate symptoms like pain and stiffness?