On my mom's side, almost every single person has it... When I was a kid around 9 or 10 my back already hurt, and my ankle was fusing together unknown to all of us... well my dad knew I was in pain, but didn't take me for an x-ray on it until I was 16, and only on the ankle. Fast forward to 29 and I have costochondritis often flaring up, spinal pain in lower back and where my ribs connect. My ankle is almost useless and hurts all the time, my knee hurts so easily and there is a constant creaking/grinding sensation so I'm worried my knee is fusing... I'm always ALWAYS tired. Standing still for a half hour will have me feeling like I need to stretch my spine but no matter how much I stretch it won't go away until I sit down or walk, but then brings the knee and ankle pain. My mom died when I was 8 and I only within the last couple months learned about my family history. Went to the doctor and explained my family history and symptoms and they won't do any testing. I'm going to try and get testing done soon. I just need answers I am always in pain and lately even laying down sucks. If I lay on my stomach my spine locks up. Often when I wake up it's hurting. I can only seem to work 5 hours a day before the pain is too much. Honesty it's too much after 2 but we need money and I can't afford doctors without working. I'm crying from pain, nausius, or shaking almost every day. My dad raised me to ignore the pain and I'm autistic so I foolishly stuck with that philosophy until recently. Sorry yall just needed to rant. I'm scared. I'm hurting. I just want answers.

Hi All,

I've recently been diagnosed with AS about 2 months ago, my first biologic injection has been booked on November 12. I will be heading to vietnam from November 23 - December 14. Since I have to take injections every 2 weeks, that would mean i would need to bring 2 extra doses with me during my trip.

Just wondering if i should wait instead until i return in december to start my first injection. I just want to avoid any health issues/reactions due to the new medication during my trip and also any issues that may come with bringing medication to another country. Any insight would be invaluable.

Hello everyone, new to this page I got recently diagnosed with AS. I’ve had Crohn’s and psoriasis for a number of years so I’m no stranger to autoimmune diseases. I’ve been on a biologic for nearly a decade, helps with the Crohns but not so much with the psoriasis or AS. I’ve been advised to avoid NSAIDs (cuz of the Crohn’s) and corticosteroids long term. Alot of it has pushed me into a dark place with depression and anxiety as well. Tbh idk what to expect from this maybe just hearing anyone’s experiences can be comforting. Appreciate you all.

Hey, just wondering if any of you has tips about the above, I caught a rhinopharyngitis 3 weeks ago, which evolved into an eye infection (almost healed now) but my sinuses are still blocked and my head and eyes so heavy I feel sleepy all the time.. Does it last a long time when you get sick as well? And what do you do to make it better besides rest and cope with how long convalescing can be?

Hi guys, I have been diagnosed with AS recently and I don’t know how to process it. I Already have diabetes and now another autoimmune disease which is way worse . I am back pain in my lower back for about a year and a half and this year the pain gradually increased from lower back to upper back and then middle . I thought that it will go over the time and it kinda did when I fully rested for 2 months and then again it came back. I thought the back pain must be because of the long hours I used to sit for my classes but it got worse these few months. The visit to the doctor said that it might be pinched nerve and even I too thought the same as I could feel something was pulling from sides in middle back and also started with tingling sensation in my feet for a month . After that I went to another doctor who gave me medicine for 1 month (still the same ) and asked for an xray if the back pain doesn’t go away. Did a xray and couldn’t find anything, then again he gave some medicine for 3 months. This time I was not waiting for 3 months to find the solution and the cause that what is wrong with my back . So I went to my diabetes doctor and he did some tests where there was inflammation. I did hla b27 test which was negative and then mri which showed bilateral sacroiliitis in SI joints . I am really scared that what my life has come to. Dealing with this pain for the rest of my life seems so unreal. I still am not able to digest this fact. My doctor has given me medicine for 1 month and I am pain free for the last 4 days and still in fear that when the pain will occur.

Hi there! I am 32 F and was just diagnosed with AS but am of course reluctant based on the way I got diagnosed. I've had the usual symptoms, sent to a rheumatologist. Got xrays and bloodwork. Elevated CRP positive ANA/speckled whatever positive HLA B27 but when I got my results I was like does this mean I have it? And I finally saw my rheum today after 8 weeks of waiting, and shes very quick, talks a lot about non medical things and doesn't really leave room for questions, but I tell myself this is her process. So she diagnosed me based on those things and the x rays showed mild bilateral sclerosing of SI joints. I did not get an MRI altho I had one years ago and it showed "Mild changes of chronic sacroiliac joint arthropathy." and xray in 2021 was "Mild subchondral sclerosis along bilateral sacroiliac joints". So this is enough right? I'm reluctant bc i'm like maybe this wasn't enough info but my symptoms really do fit. Weirdly, she barely explained AS but luckily I had looked it up when I got my results. She's def thorough on what she needs bc I got 5 tubes of blood but I do wish she'd spend more time with me explaining things/listening to questions rather than listing off step by step. Has anyone else gotten diagnosed based on these things? I was in this sub today and saw other people had less ways to get diagnosed and went on the meds and felt relief. I have to go on cosentyx and can't do TNF bc i have hypertension. I'm just so scared today I was crying out of relief and then I'll try that and it won't help and I got misdiagnosed or wrongly diagnosed (I tend to see the negative in life but trying to trust my gut and this diagnosis lol)

I see one symptom is back pain gets better with exercise? That's not really the case for me. It kind of hurts all the time but most days I don't even recognize it anymore bc i'm so used to it sadly.

I have been suffering from back pain since my late teens. It took until I was about 24 (31 now) to finally be diagnosed with Ankylosing Spondylitis, Psoriatic Arthritis, and several more autoimmune diseases (However AS and PA are the two worst effecting me). Doctors have tried every medication they have been able to and now we are on our last one which is Consentyx.

I just finished my first loading phase (300mg every week/4 weeks) and I am onto my second loading phase of the same. The most painful injection I have ever had honestly, and on top of that I am breaking out into PA spots all over my body that are itchy and painful. I never broke out like this before taking Cosentyx.

However, even with that, my pain has dramatically decreased in my body this past month. It has been the best I have felt in a while, and I have even been able to clean my house for the first time in what feels like forever (at 31 years old that is quite sad to say). Again, this is my first week of the second loading phase, and today I woke up feeling like I got hit by a semi. Everything hurts. Now it feels like there is a knot behind my left shoulder blade that I just wish someone could cut out. While standing, my legs feel like they are going tingly and start going weak like they are going to just collapse if I don't sit down.

I can't find a job, because everything requires me to stand or do heavy lifting. I also have carpal tunnel and arthritis in my wrists/hands so I just had to leave my desk job, so now those are out of the picture. If I can't stand up and do work, or sit down and do work on a computer because of my hands, what is there left for me to do? I am trying my hardest to get on disability, but I think a lot of us know that that probably won't happen.

I have been stuck mostly in bed since June, and hardly ever leave the house. At first, I was pushing myself to go to the gym and just walk on the treadmill, but I would be in back pain for days after so I figured it was the treadmill. I then went for walks at the park, and even that left me in pain to the point where I couldn't move for days. So now, I just do light work around the house and the rest of the time I am in bed resting.

Does anyone else feel worthless and like they can't do anything? This disease has taken so much from me, and I have tried what feels like everything. I am a former powerlifter/body builder so being "lazy" and not getting as much activity as I used to is horrible on my mental health. It is also bad on my mental health to be in pain all of the time. I don't get pain medications, because no one around here prescribes them. I get injections already. My insurance doesn't pay for radiofrequency ablation anymore. I am on steroids, anti-inflammatories, and more. For years I tried to keep a smile on my face and keep positive, but I don't know how much longer I can keep this up...

Hi! Could anyone help me understand my test results from my pelvic MRI? I’m waiting to see my rheumatologist next week and I’m a very anxious person. Googling hasn’t helped🙃 I’m 24F with Crohn’s disease. I’m also HLA-B27 negative. I’ve had a hx of pain shooting down my right leg for years, probs since 2020, which I thought was sciatica. Once I began treatment for my Crohn’s disease, remicade, the pain went away and came back as soon as I stopped the biologic. I was in deep remission from a resection surgery and decided to get off medication for a bit, as it was already not helping as much as it should. About 2 weeks after stopping the medication, the sciatic/hip pain came back and it was unbearable. GI put me on 2 Medrol packs which helped significantly. I tested negative for inflammation in my gut so it wasn’t active Crohn’s causing these symptoms (geographic tongue and sciatic pain). He gave me an X RAY, lumbar spine mri, and did blood tests. Everything came back normal, CRP was within normal range. Thankfully I had made an appointment with a rheumo who specializes in inflammatory arthritis and she instantly believed me that I had inflammation somewhere and that she was going to find it. She ordered me the pelvic MRI and my results came in before I get to see her again.

“IMPRESSION: Mild right sacroiliac marrow edema with bilateral sacroiliac osseous irregularity, which could reflect erosions and may be seen with mild active on chronic sacroiliitis.”

Anyone have any non rheumo opinion on these that’s? Maybe speaking from their diagnosis?

Is this consistent with AS or other inflammatory arthritis?

Thank you!!

Hmmm i have pain in groin do you have guys tips for make it go away, i think the place hurt is in the “nervus ischiadicus” what thing can make it better because now i have a hard time to walking my right leg is very pain maybe i need a cane if i think about my condition right now.

Basically the title. I had my first and only X-ray of my joints about 2 years ago when my rheumatologist was trying to narrow down what was wrong with me. She diagnosed me based on those X-rays (although I couldn’t and still can’t see the abnormal edges of the vertebrae she pointed out) and she’s never mentioned doing any sort of scan since.

I’ve been on Enbrel for 7 months and it’s just not working as well as it should be. Shouldn’t she be requesting scans to monitor the progress? Especially if the medicine isn’t working like it should and the degradation of my joints might be getting worse?

I have an appt with her next week, should I ask for new ones?

I have my biologics (adalimumab) sitting in the fridge waiting to go. Feeling pretty intimidated and anxious about the thought of side effects. I have a busy life with a fair amount of work stress and intense days. What should I expect? What did you do to prepare for biologics, i.e. self-care, planning injections before a weekend etc? Any advice much appreciated, thank you.

Hi ASPA, firstly happy 👻Halloween 🎃 family … I’m walking like Lurch from Adam’s Family so my gait is appropriate today. 🫣 I’m seronegative (female mid 50s) just wondering if anyone has tried Topical glyceryl trinitrate cream or patches for enthisitis/tendons? I’m crippled with enthisitis in so many places so always looking for treatments. ?

https://pmc.ncbi.nlm.nih.gov/articles/PMC6362607/

I’m really upset and maybe way more upset than I need to be. I went to a stupid team building day today and we all had to do the “amazing race”. I asked ahead of time how much walking would be involved and I was told there wouldn’t be much. About half an hour in after A LOT of walking my colleagues in my team could notice I was slowing down. Eventually they got sick of me slowing the team down and just left me. They said “just go meet us at the end”. It’s so dumb because it was meant to be fun but I felt so humiliated and embarrassed. I know it’s a small thing but I haven’t been able to stop crying. I’m 28 years old and I have the ability of an elderly woman.

I should also mention they know I have mobility issues.

I am recently diagnosed with AS and should be starting biologics in the new year. On 11th October I had a steroid injection and didn't really get any obvious immediate benefit from it. In fact I was gradually getting worse while taking 90mg Etoricoxib everyday (started before injection and continued after). However things changed recently. On the 27th October I felt an improvement in pain and stiffness over night. Then again on 28th October I felt more improvement overnight. I've gone down from 90mg to 60mg and could probably go down to 30mg.

I was wondering if the steroid injection finally worked or is it more likely that my flare up subsided?

Hi all,

I'm 35 M, with symptoms since last June. I started Hyrimoz (Humira biosimilar) a month and a half ago and, while I'm considerably doing better, I'm still perplexed about how much its effect varies from day to day, from week to week. Is this normal?

It kicked in on day 6 of my first injection and on my second week I was 95% pain-free: no lower back pain during the day, none at night, no stiffness in the morning. Amazing.

This lasted one week and to my dismay never happened again: on week 3 I went back to having discomfort around my buttocks during the day, waking up at 5am for pelvis pain and being super stiff for an hour; in the following weeks it has improved, with ups and downs, but never to the point I was on week 2. 

I'm on week 7, with 4 injections in total. Can anybody relate? The doctor said it's my body adjusting to the new treatment. Should it stabilize after 3 months? Or is it just the disease varying in intensity? My baseline pain wasn't low before, but it was stable.

Thanks!

I was diagnosed with cancer in 2022. Instead of finally feeling better I’ve been progressively getting worse.

Prior to my cancer diagnosis, I had been gas lit and dismissed about pain, mobility, and health issues. Turns out, when you have cancer after years of complaints, doctors start to listen. When I finally got a doctor to listen to me and finally do scans and run tests we found more than just cancer. Positive ANA, anti rnp, hla-b27. Had a little MS potential that is currently off the table.

Long journey short, I have progressing AS. Was first presenting in my ribs, then ankles terribly, knees, shoulders, and eyes. Now I’ve developed curvature in my spine and my mobility has really taken a hit in the last 6 months.

It feels like things are happening so quickly. A few years ago I was running half marathons and now I don’t know if I’ll be able to walk a mile on any given day.

Has anyone had a comorbidity trigger AS into super drive? Does anyone else have a history of cancer and AS? If so, are you taking Humira? I can’t seem to accept any of this and fear that my future will have less and less of the activities I love and live for.

hi, i was hoping to get some feedback from anyone here who may use mobility aids to help with their AS. like what you use, why you use it or how it helps you. i’ve been wanting to get one for about a year, but it’s so hard especially when you have people in your ear judging you.. i also have some problems with my feet that i was born with, they are flat and i have overpronation.. plus being born with some short tendons in my feet. overall, with that and AS its so excruciating to walk with. i wanted to get a wheelchair for days i am out for long periods of times typically trying to enjoy myself, like going to the mall or for example i went to water safari with my family. i cant do these things without being in excruciating pain. but i also started wondering if there was a mobility aid that could help me on a daily basis like a cane or something, i’m just not sure so i wanted to hear other people’s experiences with them!

I live in fear every day since I got diagnosed. Every new ache or pain sends me over the edge. I worry the humira won’t work, and then I’ll fail other biologics. I worry this disease will destroy my body before I turn 40. I’m scared I’m going to get cancer. I’m scared of the pain coming back and never leaving. I hate living like this.

I started flaring up today. My right side from my SI joint down to my knee is killing me. My anxiety is sky high. My neck is sore- I think it’s just muscular. And I keep palpating near my lymph nodes and they feel sore. Maybe I’m getting sick, or maybe I have lymphoma. Maybe it’s just the anxiety and the stress. I can’t relax. I can’t sit still. I want to cry. But mostly I want to feel better. I want to feel normal again.

Update: Thank you everyone. Last night, I took a hot shower and let myself cry it out. Then I took some NSAIDs and a muscle relaxer, put on a lidocaine patch, and drank some hot tea. I got some sleep and I’m feeling a little better. I’ve been under a lot of stress lately, and I think I had a small anxiety attack last night. I was just recently diagnosed in June, and have been on humira since July. Everything is still brand new to me and I’m trying to navigate this new life. But reading all your comments is really making me feel better. I know I’m gonna be in pain sometimes, and I know it’s not going to last forever. I know I’m going to be ok. Some days are just harder than others, and yesterday was one of those days. Again, thank you to everyone ❤️ this group has helped me through a lot of not so great days

I know this goes without saying, but I just need to scream into the void today.

AS is why I was fired today. I started my dream career about 3 months ago, what I didn’t know is that I had whooping cough at the time. I ended up having it for a total of 4 months (I had been feeling unwell during the interview process but thought it was just a cold). I was given antibiotics and just like that I was feeling so much better. For the first three months working there I was exhausted all the time. It was all I could to do to show up to work every single day. I was learning the role, albeit slower than I normally would have. I made some mistakes, but I’m sure the brain fog from methotrexate contributed a lot to that. I was far from a good employe, I was calling in sick because I was genuinely sick without knowing what it was, I asked so many questions trying to remember the processes for things but still forget them… but I know I can be better and it’s so frustrating that I’m not.

AS is so much more than just hurting physically. I know my life isn’t over, but I’m already exhausted thinking about trying again, let alone overcoming my bruised ego.

Can someone please explain enthesitis to me as though explaining it to an 8- year- old? I've googled but my tired brain can't make sense of it.

For me, my pain is pretty bad in the morning, but unbearable between about 6-9 pm

I'm one month into a fat loss phase and I am in so much pain. I've had a bad flare up for a week now. I realize that when I'm having a flare up, my weight on the scale goes up a few pounds. I am so frustrated. I know I am only one month in but with the pain, I just feel discouraged. Anyone else out there with Ankylosing Spondylitis who is or has tried to cut body fat and had a hard time because of flare ups? Anyone find helpful articles or anything about this? Thank you!

On my recent x ray, the radiologist said that my SI joints were considered "erosive symetric." I peeked in my chart and saw it lol but my doctor hasn't spoken with me about it yet. If you've been told this about yours before....what did it mean for you? Does it mean that I have sacroiliitis?

Thanks for any insight offered!!

I’m getting my first cane today (23M), I don’t need it all the time but I tried one during a flare up and it was very helpful for offloading some weight from my back and relieving pain when it got really bad. For reference, I workout frequently and am in good shape (visibly) for someone my age, but I am worried that I will really like having a cane to lean on, stretch with, heckle people with, etc. I heard that canes can do more harm than good for people with arthritis when they change their gait or become overly reliant with them. I haven’t heard anything like this from someone with AS. Have you or someone you known ever struggled with MORE pain or problems from overusing a cane?

I was once kind of Leary of getting on biologics. After about 10 years of dealing with the symptoms I finally saw a rheumatologist. After explaining some issues I’ve had, past experiences and symptoms he ran a few test and decided to push forward on getting me on a biologic. We started with Cosentyx but insurance denied me, and asked that I tried Taltz first. So here I am, 3 months in….have jumped thru 1000 hoops between Taltz prepaid card application, dealing with lack of communication between pharmacist, doc, and Lilly (Taltz), finally ending up on PTR reimbursement plan…I can say this shit is WORKING. For the first time in probably 10 years I can squat without any pain in my back OR my knees. I wake up and can literally spring out of bed. I don’t have to let my lower back “warm up” I’ve suffered zero side effects. I have reaped nothing but benefits. I say all of that to say this…. Give it a shot. Take the shot. Life is way too short to live in pain if you do not have to, or at least slow the process. Take a biologic if you can,

<b> BUT even if you don’t….WORK OUT FOR THE LOVE OF GOD WORK ON YOURSELF. reap all of the benefits you can. Walk, limp, pick something up. Put it back down. Get out of the chair and get outside. Walk the dog. Get up. Eat healthy. Don’t just sit in complain. So many people in this sub just want to relate with each others ailments. (I’m about to get downvoted to hell lol) Stop feeling so damn sorry yourself and turn off the tv. Lose weight. Eat right. Don’t wake up 60 and realize you’ve watched life pass by all from your comfy little couch.

That is all

My wife has had constipative digestive issues practically her whole life. When we got married 5 years ago, she had her first iritis or uveitis flare up on our honeymoon. She has heavily modified her diet as it seems closely linked to flare ups in what has now been diagnosed as Anterior Uveitis. EDIT: she also has psoriasis or eczema flair ups that are closely linked with her diet. Even more closely than the uveitis it seems.

However, as of a few weeks ago, while still maintaining a strict diet, she started having a flare up and it has lasted quite a while. It’s causing her distress and we are seeking answers. She went and got an HLA-B27 test and an ANA test.

HLA is positive and ANA is negative. The PA on the phone immediately said “you have ankylosing spondylitis” and both my wife and I looked at each other like WTF, because we are pretty sure that’s quite a jump to conclusions based off of one test.

To be clear, my wife is physically active and has at no point had any kind of chronic back pain or joint pain. Her main symptoms are constipation and, as of more recently, uveitis.

Are we correct in thinking it’s a massive jump to a conclusion to diagnose something like this based off of one test? We are currently dumbfounded and exhausted from navigating the stupid American healthcare organized crime ring.

We were leaning more toward it being some sort of inflammatory bowel disease.

Any insight or help would be greatly appreciated.

It all started 9 months ago, a week after a flu I started having mild back pain (low), in the course of the months I worked as a waiter and the pain got worse the first 3 weeks then stabilized . Today it still hurts, more than hurt is kind of annoying , some day more some less, went to a reumatghologist and he found nothing , I have few to no stiffness in the morning and pain is there but to be honest not much worse than during the day. Pain some days is in hips or knee too but mostly sacroiliac joints but from MRI and xray there's no sign of inflammation or anything and blood tests are perfect. I'm also hla b27 negative but I still have this pain everyday . I really don't know what to do or what is it🥲 I'm so tired mentally. I tried arcoxia and naproxen but they didn't touch the pain even slightly literally 0. What can be guys?

First year on biologics and didn’t play the game right - ran out of copay assistance with Hyrimoz (adalimumab-adaz).

I’m looking to switch to Yusimry (adalimumab-aqvh) for the rest of the year (<$600/mo cash), and be back on Hyrimoz in the new year.

Do we think this will cause antibody formation?

I have spine and back pain..throughout my spine and weakness. I just got to know there is something compounded diclofenac 5% and I got it last week. It is like a new life. The pain is gone. For few hours until I have to apply it again. And I am not making it up it has given me new hope on life. I talked to my rheumy and he said it is possible some nerves are getting irritated in the spine, bone spurs or something.. Since the Diclofenac tablet does not work as well as the cream it means the issue is skin deep and not internal. As else the tablet would have helped. What are my options? Anyone else faced this issue? Sorry I know the information is not sufficient but I just want to put this question out there..and see if anyone has any idea. I am due for second diagnostic MBB for C5/6, C6/7. The first one helped significantly with my right ROM of my neck but not my whole spine or as much with my left necks ROM I will be very thankful for any help..