I’m just about to start taking Imraldi biologics. As I have to every 2 weeks, what day and time would you suggest I start? I like to drink beer on a Friday, Saturday and Sunday nights. I go to the gym weekdays.
Ideally, I’d like to feel my best at the weekend.

Hey all,

30 F, diagnosed with spondyloarthropathy a few weeks ago after 6 bouts of uveitis in about as many months, years of SI joint area pain, and an MRI that found “subtle bilateral subchondral bone marrow edema at the posteroinferior right greater than left iliac bones.”

Here’s my question: for years, I have felt that cracking my back is the only thing (besides NSAIDS) that even temporarily relieves my pain when I’m having a flare. I also wake up multiple times each night because my body is begging me to crack my back. It’s much easier to crack at night and has actually become even easier since starting Hyrimoz (Humira biosimilar) a few weeks ago. So I’m wondering: is this an AS thing or me thing?

Also I feel like I’m generally more prone to developing pain in other joints than the average person. Could that be an AS thing, or am I just unlucky?

Thanks so much!!

Hey everyone ! I am reaching out to understand what progression really looks like with AS ! Is it always about bones fusing together !?

I am in my late 20s and was diagnosed three years ago but no biologics yet so I am trying to understand the journey of people with biologics especially people who started them later in life

What does life look like for you all !?

Any insights or personal stories would be incredibly helpful while I try to navigate the decision of starting biologics.

So far I have been able to manage, it is not extreme as of yet. I wonder is there any way to win against this condition without going down with the biologics just yet ! I understand everyone’s body is different and so are their symptoms.

Hey folks - long time listener, first time caller.

Used to be an Aussie Rules umpire as a young bloke, but picked up AS symptoms from 18 which slowly ate into my running / bike riding fitness, until an eventual AS diagnosis at 23, which is where I’m at now.

Over the last three weeks I’ve worked gradually back into some straight line running, short distance, keeping myself under 20-22 mins, and noticed some pretty mild knee, ankle and foot pain, both sides, which I wrote off as impact soreness. Probably went too hard with the running as unfortunately…

Went for a very mild run and had some quite acute pain in my left ankle pop from nowhere without a roll or mis-step - top of the foot, outside half of the ankle. It’s been fairly intolerable now for the better part of 72 hours - stairs and slopes are profoundly no good, walking is not a lot of fun, and you can forget running entirely.

Wondering if this is somewhat of a typical experience for the wider AS-suffering community? My gut feel is that it’s some sort of tendonitis from what Doctor Google reckons, but thought there could be some lived experience.

Cheers

I’ve resisted Biologics for so long as I saw them as the last resort, however I’ve tried everything else and doesn’t seem to be working.

I wanted to ask for people’s experience of Biologics, how much they help, any side effects etc. also is it a case of once you’re on Biologics that you’ll never be off them?

Does anyone find any alternative remedies for sleep help? I mean alternative to medication/biologics. I’ve seen all kinds of products from earthing matts to acupuncture matts etc. just wanted to see if anyone had found a product effective? My pain at night is unbearable so every little helps!

Hi everyone, I’ve just been diagnosed with crohns, which I’m told is more common for people with AS. I am currently on enbrel which seems to be helping my AS but my gut issues are pretty problematic atm. The gastroenterologist prescribed mesalazine tablets and was wondering whether anyone else is on mesalazine tablets for their crohns or IBD and have found it’s helped or had any adverse reactions? Im just always concerned about adding yet another medication to my already long list!

Lately, I'm having an existential crisis every time I think I should rest. Rest is good - no, wait, it's bad because of my AS. Is today's tired one that I can push through or is not sleeping for weeks going to finally break me today. Will I always be this fatigued or is this fatigue telling me I'm missing something fixable. I'm entirely unsure at this point. And very tired of the brain fog or brain fogged from the tired?!? My body needs rest to heal. But rest causes pain and jolts my body. Overuse causes pain as well - like walking too far in one day. And we all know there are consequences when pushing too hard.

Still trying to find the right balance - both during flare ups and during better times. I'm working on how to communicate about my condition more clearly so I hope I made some sense. Any tips? Strategies? Thoughts? Thanks in advance.

Newly diagnosed and taking the steps for my Biologics.

The last week or so, I have been doing decent on my Naproxen. It hasn't taken all the pain but I was getting about 6 hrs of somewhat relief. Yesterday became a horrendous amount of pain! And today was not much better. Dr gave me a prescription for an Arthritic pain med and Tramadol to try instead of Naproxen.

He also said I can choose my Biologic, it all depends on if I want an injection once a week, every two weeks or once a month.

I am already on methotrexate injections every week for other things, so injections don't scare me.

In my mind there is not much difference in any of them except how many a month. And I wrong to think this? Is there a big difference between them??

Thanks for your help.

The other night I woke up out of my sleep because of an excruciating pain in my hip. I could barely move. It kind of burned and felt like a muscle cramp. It was so severe and intense that I questioned going to the ER but am in such strong sleeping meds that I couldn’t function between the pain and meds. Has this happened to anyone else?

Mom with 14-year old son; lots of questions & worries For past two years or so, our son would come home from assorted sports practices with “shin splints” and “heel pain.” This past fall, could not run comfortably at football practice and we brought him in to doc. She squeezed his heels and declared it Severs disease (super mild) and sent him to PT. Worked with PT for weeks and our son sat out of football. But now, the pain like that in his heel is also in his hip and shoulder. PT said it was referred pain from the heel. OK, but that still didn’t seem to add up to me. So I brought him back in to doc. She asked about history of arthritis and autoimmune (which I have Hashimotos; his sister with Graves). She wisely ran a gazillion blood tests with 6 tubes of blood. All tests came back negative except for HLA B27. It is positive. She called us to tell us the news and the possible interpretations and wrote us a referral to a children’s hospital in Chicago to see a pediatric rheumatologist. So, that is where we are headed. Questions, what should I be asking in our appointment? What might I expect as steps in this life long process? What should I potentially be wary of? Do 14 year olds go on biologics? If by detecting this disease sooner, does that potentially mean we are ahead of the game to prevent progression, or does it mean we are ahead of the game to get hit harder, faster, longer? How fast or slow does this progress? I have hearing pad, ibuprofen and a hand held massager for him and encourage him to eat well (not the easiest with a freshman boy). Anything else that I might be able to do? I ask him to offer me a number on a pain scale from time to time. Does not get over a 6 (1-10). I have read and read as much as I can in some speed dating sort of fashion, and I am keenly aware each body is unique and autoimmune disease is sneaky AF. I want to stay hopeful. My son is an absolutely incredible kid. Your ideas, suggestions and hope would be immensely appreciated. Thank you. 💜

36 M who developed significant, insidious low back and neck pain (OA on MRI), buttock pain, and bilateral shoulder and knee tendinitis over the past year. While my labs (ANA, CRP, etc.) are all normal and I’m HLA negative, my butt, back, and neck pain is all much worse with rest or sitting and better with movement, I wake up with a good bit of morning stiffness and pain, and I get a positive response from NSAIDs. My SI joint mri showed “non-specific” trace marrow edema and joint space loss. No history of injury explains any of this, and PT hasn’t helped. I rely on ice packs and movement to get thru the day. So my rheum thinks I am in a “grey zone,” may have non radiographic ax spa, and wants to try to get me on biologics.

However, I got a second opinion from another rheum today and it was very dismissive. He essentially said I can’t have ax spa because I don’t have late night / early morning awakenings. Is that true? I guess I’d be glad if it were, but i feel like insomnia isn’t a requirement. Pain builds up when I rest, but I stay asleep pretty well… Very confused.

On my mom's side, almost every single person has it... When I was a kid around 9 or 10, my back was 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 the 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 of 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.