The Spondylitis Association of America is holding its annual virtual summit May 3rd and 4th. It's totally free and useful for people with all levels of experience with SpA (newly diagnosed, long-time patient, fused, early stages, hlab27 positive and negative, etc).

It's a two-day event, but registering means you'll have the ability to watch most of the sessions on demand, so even if you are busy on the 3rd and 4th, it's worth it to register and view the content later.

If you've attended in the past and aren't sure if it's worth it, keep in mind, some aspects of the program have changed (e.g., you can now participate in live zoom support group sessions, do live q and a with experts, and share resources (recipes, workout routines, even recommended rheumatologists and other healthcare providers) with fellow spondy warriors from around the world.

To find out more and register: https://spondyloarthritissummit2024.vfairs.com/

Hello Fellows,

I was diagnosed with spondyloarthropathy like four years ago, on biologics since three years with partial success. Right now I am on Simponi - my joints are fine but I have terrible muscle pain in the morning and also during the day.

The pain is localized somewhere above my hips (green circle in the picture below) and also in the same region at my lumbar area. It is hard to bend and even raise my leg. I am trying to stretch and exercise but nothing seems to be working.

Does anyone has similar symptoms?

https://preview.redd.it/ifyavx3hx9xc1.png?width=345&format=png&auto=webp&s=cca794a64725b46fd2c0d86622080ec292809d6f

Did anyone else had depression and low energy,that came for no reason before the pain actually started?

Has anyone used inflammatone for their ankylosing spondylitis ?

Hi everyone, My AS has been pretty manageable lately, but for a few possible reasons, I’ve been in absolute agony today. I manage my pain well with a combination of lifestyle habits and 75mg diclofenac twice a day. However, today, diclofenac and tylenol haven’t done shit. I know this is moreso a question for my doctor, but it’s Sunday and I won’t be able to get in touch, so I wanted to know - has anyone taken an extra dose of diclofenac when needed? I was thinking of taking an extra 75mg tonight and see if it helps. Thanks in advance!

Hi! Here’s my history: I’m a 42F. Lower back pain started in my late teens.

-Upper back pain started in my early 20s. It was excruciating and my college roommate would have to help me get out of bed in the morning. Difficulty sleeping due to pain. I have to use a ton of pillows to help align and be comfortable-ish.

-woke up one day with a pinched nerve and was unable to use my right arm or change from sit/stand position without the worst pain. My dad had to carry me to the doc. I was in a neck brace to help with compression and did PT.

-Saw many docs who all told me X-rays looked good, I was just out of shape and sent me to PT. I’m 5’4” around 120-130lbs. Did aerobic type exercise

-Many bouts of sciatica

-Finally in mid 20s had MRI and was diagnosed with moderate osteoarthritis in my back. Sent to rheum. No meds or interventions prescribed.

-I gave up and basically live on my heating pad and Advil.

-Eventually pain developed in my neck, shoulders, hips, wrists, toes (could barely walk) and hands on an almost daily basis. I’ve had dry irritated eyes for as long as I can remember and carry eye drops everywhere I go.

-About a month ago, I developed “sausage” fingers which appear to be almost crooked. It’s become difficult to hold my coffee cup. I can’t lift or wash pots and pans because of my hands and wrists. I was worried about RA so went to doc. Doc suspected AS, ordered labs and lower back X-ray.

-So far all RA markers are negative, c-rp normal. HLA-B27 is positive. Hand X-ray normal. -X-ray results:

“IMPRESSION: 5 lumbar type vertebrae. Mild levocurvature of the lumbar spine. 2 mm retrolisthesis of L5 on S1. Vertebral body heights are maintained. No pars defects. Mild intervertebral disc height loss and mild facet arthropathy at L5-S1. The visualized bony pelvis is grossly within normal limits.”

-doc is out of office but his PA sent me this message:

“Xray of your lumbar spine shows mild disc height loss which can be contributing to your pain but no obvious arthritis or fracture. Based on Doctor’s concern for spondyloarthropathy, there is no obvious ankylosing spondylitis present.”

After doing a ton of research, I was like oh man, this might be what I have (nr-AxSpA). But the PAs response has me worried I’m just going to be blown off yet again.

Any thoughts or advice? This has been such an emotional rollercoaster.

I just started on Cimzia. After the first loading dose, I woke up the next morning with no stiffness. First time in probably at least five years. I still have pain in my neck and lower back, but the stiffness- which was the thing that was most annoying because I couldn’t wash my face or put on my pants or shoes without pain in the morning- was gone. It’s still gone five days in. Does this mean that I do in fact have nraxsp? I’ve been gaslight for so long it’s hard to grasp that it is in fact autoimmune. So just looking to see if the cimzia working is proof. Tia for any responses!

Not sure where else to get this out…but I’m not here to scare anyone. I’m 31, finally diagnosed with AS last year after suffering for over a decade with numerous autoimmune issues. I’m HLA-27 negative. Nobody else in my family has serious health issues except for me and my one brother. I believe my parents genes together just created some kind of defect that passed along to us, especially considering my brother and I both have the same category of disease. Not sure how many of you are aware, but AS is under an umbrella of rheumatic diseases…I believe there are 5 of them and one of them is Crohn’s disease. My brother was diagnosed with Crohn’s about a little over a decade ago, he was 35 years old and passed away this morning from what I presume was either a blood clot (he’s had several pulmonary emboli in just the past year) or heart attack. I have no words to describe what I’m feeling right now. I don’t want to believe it. I am completely out of my head right now and living an out of body experience. I’ll never talk to my brother again and I am mortified balling my eyes out.

Please take care of yourselves, no matter how young or older you may be. Make your follow up visits, eat and drink as healthy as possible, get your labs routinely, be active and push yourself, SPEAK UP FOR YOURSELF - no matter how minuscule the issue may seem, get 2nd-3rd-4th opinions, never stop fighting for yourself and your family. My brother leaves behind 2 babies under 3.

Please take care of yourselves…much love.

My lifelong question of “what is so different about about me?” was finally answered 5 days ago after doing a 9 day stay in a mental hospital due to suicidal ideation. I’ve been seeking therapy due to my lovely wife signing me up for past ~8 months or so. I was subsequently placed on 25 and 50 mg doses of Zoloft by my rheum after seeing consistent weekly therapy sessions for a few months. I always knew there was something off about me other than just growing up with AS ever since I could remember. I was raised in a family with 6 children that just didn’t talk about mental health whatsoever. Part of what got me through having AS as a kid just trying to fit in and be “normal” was my tough attitude towards AS. It was always “fine” and I just learned to deal with flares and such by being even more tough brave and as they arose. Fast forward to a few months of therapy and I was diagnosed with with having depression, anxiety, and PTSD. My dad is a tough one, and he certainly didn’t shy away from going hands on with us kids. That is all I will speak on that matter, but you should get the gist of things in that one sentence. I failed out of college, would throw away Humira shots, not take my oral medications for days and sometimes weeks at a time, struggled to maintain friends, and just overall didn’t seem to really fit in with the rest of crowd. I always knew that there was something more to me than just AS, which is why I agreed to seek therapy after being highly reluctant for so long. Although I’ve had so many red flags that seemingly nobody noticed, I was always able to get into very niche sides of the internet and make money on my own starting at a very young age (14 years old, 27 years old now). This ability to become entrepreneurial and excel doing so was always what I hid my virtually nonexistent self esteem. I didn’t really realize it at the time, but I was trapped inside of my head. Again, I just always had this feeling that there was more to “me” than just being quirky and different from most people who were my age. Come 2021, I was able to do very well for myself and girlfriend of 10 years at the time selling product on Amazon. Lost interest in that at a moment’s notice and ended up taking a break for a bit. Fast forward again and I rediscover cryptocurrency after not touching it since I was 14. I ended up doing well and trading well above half a million dollars. Lost all of it in what felt like the blink of an eye. Again, I kept asking myself, “why does this always seem to happen to me?!” I could never remain consistent at anything I was so good and more importantly passionate about. That last sentence was ultimately the question I wanted answered through therapy. The Zoloft wasn’t really doing anything for me, so I asked for that bump to 50mg. A couple months go by and it’s still not doing much for me. I still felt like shit physically and even worse mentally knowing I pissed away my now wife and I’s future. I still couldn’t really tell you what exactly happened to all of that money that I squandered away. Let me try and steer this ship back to just two weeks ago. I’m feeling completely horrible in my head, so I call the suicide hotline at 4:30 am after not sleeping or eating much and told them I was going to end my life with the invisible gun I had (we don’t even own any firearms). I have always told myself I would never do such a thing. My rheum sitting me down before prescribing and explaining suicidal ideation and Zoloft being a thing that can happen to some patients honestly saved my life. I was diagnosed with Bipolar Disorder with Psychotic Features. It all makes so much more sense to me now. The weird, the good, the bad, the ugly, the wondering, the hurt, the not being able to follow through with anything, the everything. My wife and I now have two very rare conditions at our age on the table to deal with, but I couldn’t be happier. Just being on the proper medication for the brain for two short weeks has been so amazing. I think I finally know what it’s like to be truly happy even when I seemingly have nothing. It’s a feeling unlike anything I’ve ever experienced in my life before. I’ve had periods where I thought I was happy, but with this d/x and proper medications for my brain, I’m genuinely excited for my future for the first time in such a long time. I know this was long winded, which is super “unlike me”, but it’s super important to share this with people. Please listen to your brains. I wasn’t really taught to do that by my parents, but I’m sure glad that I got the help I’ve always deserved. This is my first time sharing this story, so I apologize if it’s all over the place. This is just the very beginning stage. I have much, much more to come.

TL;DR - Please take your mental health seriously. Your brain is no damn different than your knuckle, knee, or elbow. It’s arguably way more important in my opinion, but that’s a debate for later. I was raised in a family that didn’t talk about feelings and mental health awareness, so it wasn’t until I starting doing my own research and sought psychiatric help that I found out I had bipolar disorder, which answered so many lifelong questions I’ve had about myself. I’ve never been more of an advocate for mental health, but therapy in particular. Giving someone who suffers with undiagnosed bipolar disorder an SSRI (Zoloft) is a lethal cocktail, but God I am glad it happened to me. Thanks for reading.

Not that I'm stressing about the results already or anything.

I got my second shot of Simponi on Thursday and i don’t know if I’m okey

On Thursday I got an awful headache that lasted until Friday night, I feel really itchy, there’s red marks on my neck i don’t know from what, experiencing sharp pains, and i feel like my chest feels really heavy when I breathe I just wanna know if this is normal if anybody has felt this way

Any thoughts on Betamethasone cream ?

I'm 14 f, and up until really recently didn't even know this disease existed. Over the past month or 2 I've had multiple instances of being woken up by severe back pain around 2-3 am. I finally looked this symptom up and the most common articles I saw were about AS. I've looked at other symptoms, and do have some of them. For years I've gotten really bad heel pain after standing still for too long or doing things like working in the kitchen for too long. I had never really thought much of it though, because it goes away after I either sit down and relax or start moving around again. I also get rib pain somewhat frequently, another thing I hadn't thought much of. It comes and goes, but occasionally for short periods of time I get a sharp pain when breathing in.

The problem is that these symptoms aren't super frequent (although the heel pain is very predictable) and I don't have the chronic pain that a lot of people with AS have. However, I'm still really young so I'm not sure if it could just be early stage. Or it could be something completely different.

Either way, I'm going to mention it to my doctor, but if anyone has any advice for me that would be appreciated :)

For the last couple days I have been having warm red knees during the day even not after working out. I’m 21 and am taking biologics so i’m hoping it’s not other arthritis symptom. Does anyone else have this knee pain? Even when not doing a ton of stuff? Help 😅

Enbrel keeps my AS in check the vast majority of time - it’s been a miracle drug for me. However, if I go too long between shots (rare, but it happens due to work/travel schedule), or if I’m too physically active (think pickleball), then my left knee swells up with what I’m told is synovial fluid. In times past it would be a little tight and unsightly for a few days or a few weeks…no big deal; very manageable.

However, as I’ve gotten older it’s taking a lot longer for the pain - in particular - to go away. This last time the pain lasted several months and got bad enough that I was noticeably limping for a week or two. I saw a knee doc who said that, structurally and mechanically, the knee was 100% normal. And yet, it hurt quite a bit. The pain has since subsided 80%, but I’m trying to figure out how I can avoid or minimize this situation in the future.

I’m open to solutions, except for: stretching, dietary changes, weights, rest. I’ve tried all of those things to no avail. And yes, the vast majority of time I take my shots on time, and I avoid strenuous activity, but I don’t want to live in a bubble. There has to be a solution out there.

TIA!

Had Uveitis in January, and found out I had the HLA-B27 gene. seen a rheumatologist in feb, he thought it was AS, only did x-ray on my ankle, knees, SI joint. Second appointment he really couldn’t tell anything on my SI joint. He send me off to do physical therapy. It seems like if he just gets a MRI we would know if I have AS. My normal doctor did get a MRI I do have mild Facet degenerative disorder.He keeps tellingme a complained patient. I am see a new doctor in July. My normal doctor did get a MRI I do have mild Facet degenerative disorder. Did I do the right thing to change rheumatologist

I'm 27 and recently found out I have AS.

About a year ago, my lower back started hurting, probably from heavy lifting and stress at work. I was a medical translator in a hospital with a hectic messy schedule.

Out of 50 colleagues in my hospital, 5 were diagnosed with AS, showing similar symptoms.

Since leaving the hospital, my pain has eased a lot.

I quit my job to focus on my health, thinking the hospital environment might have made me sick. (Recently read th covid19 is making the chances to have this dieses higher)

I feel better now, with less joint pain and inflammation.

Even though I used to be active, I've taken a break from heavy lifting to relax.

I don't think I have AS as a chronic condition. Doctors only found swelling in my SI joint, and my test for HLA-B27 was negative. I mostly feel lower back pain and sometimes get depressed.

My question is: If I do have AS, are there different levels of severity? Can biologics help control it forever? Will it get worse over time, to the point where, by age 60, I'll be in unbearable pain?

Please reply soon, I'm having a panic attack.

Has anyone experienced something like that? It’s fine after my injection (benepali) but it’s only just started happening recently.

Again and again I see posts from uninformed patients about the role of biologics. Some try biologics and quit after a couple doses because it did not help with their pain of flexibility. Biologics block receptors for two protein types. It prevents the bodies immune systems inflammatory response. As a result the biologic does several things. BUT…. It may not do all of them. The biologic can: prevent damage to joints and connective tissue- prevent other symptoms from presenting- lessen pain and fatigue- and a few other secondary benefits.

Again and again I see people state that their biologic is not working and they quit it. They may not have had relief from pain. They may not have had relief from fatigue. But it may be preventing further damage and symptoms in different body parts (example Uveitis etc).

I have been on biologics for over 20 years and credit them with no radiographic changes and no more recurring Uveitis. Pain and Fatigue is a byproduct of the inflammation. Reduce the inflammation = reduce symptoms. Do not think that Pain and Fatigue are the only negatives happening to your body. Think long term.

Sounds like a biologics stock sales pitch 🤪- anyway, use everything in your arsenal and believe in the science. As I thank the many people hunched over microscopes for many years to come up with my biologic and the brave soles in medical trials. Thank you 😊

Recently re-diagnosed with AS from back in 2014. Have taken a trial of Enbrel ( 1-2 beneficial days) only to find out in a Prism-RA test that TNF won't be effective for me. Then skipped IL-17 meds because of some gastrointestinal issues at the time. Have been on Rinvoq for 3 months and only 1 beneficial day. Will be seeing rheum Dr at end of May to request a change in meds. Looking to hear from those with similar experience please..

Any body diagnosed with Ankylosing Spondylitis and having success with alternative forms of medicine or treatment.

Please share your experience.

I walked probably 2 miles yesterday and by the end of the day my belly was so bloated and my pelvic floor was so tight I could barely breathe. Does this happen to anyone else?

Not due to side effects or anything. Just because your labs and imaging were fine. If you stopped. How is everything? How long have you been off meds? What is your doctor’s plan?

Edit: my doctor haven’t suggested it i am just asking, spilling.

As of now (21 days in), my new mattress, the Endy hybrid, hasn't alleviated my lower back pain, a discomfort I've been experiencing for over a year (originally diagnosed as sciatica but now manifesting as general back pain, particularly pronounced in the mornings).

Before I send back to return the mattress and explore other options (it is indeed comfortable), I'm curious about your experiences with how long it took for a new mattress to provide relief for your back, if at all. I'm pondering whether I should persist until the 100-day mark or if any improvement would have been noticeable by now. While I had hoped for a miraculous solution, it's plausible that no mattress will alleviate the discomfort, but I'm eager to hear your insights!

I should note that my previous mattress was a decade old, and I suspect that its sagging contributed to the pressure on my lower back. While I do feel more supported on my new bed, there hasn't been any discernible change in my level of discomfort.

I've had multiple people recommend the Forme Power Bra when asking about bras that would work for me with back issues. I was curious if anyone with AS had any experience?

I'm kind of leery about a posture-correcting bra helping with AS, and I didn't mention that AS was the cause of my back issues and didn't really want to share that info there. At the same time, I don't want to pass up something that gets great praise as a bra for people with back issues without doing a little digging. Finding a good bra has been a challenge for me for years, and I'd love to resolve it.

This is my first post in this forum, but I couldn't help sharing some exciting news.

Yesterday, seniprutug was approved for use in individuals with ankylosing spondylitis by The Ministry of Health in Russia: Russia approves first drug against Ankylosing Spondylitis - Prensa Latina (plenglish.com)

This was based on a succesful phase 2 clinical trial, showing that the drug is safe and effective in a majority of patients: (7) (PDF) Effectiveness and safety of BCD180, anti-TRBV9+ T-lymphocytes monoclonal antibody in patients with active radiographic axial spondyloarthritis: 36-week results of double-blind randomized placebo-controlled phase II clinical study ELEFTA (researchgate.net)

One patient got virtually cured of ankylosing spondylitis in a case report: Targeted depletion of TRBV9+ T cells as immunotherapy in a patient with ankylosing spondylitis | Nature Medicine

This means that seniprutug can be bought in pharmacies in Russia very soon. I am contact with one of the lead authors from the Nature paper and will try to get hold of the drug. It will be interesting to see whether this can be succesfully shipped to the EU, given the current Ukraine conflict (I live in Denmark). Otherwise I'll have to go to Russia

I'll post here again when I know more, and my results if I manage to receive the drug

Hi everyone,
I recently got diagnosed with AS (30 F). Wasn't prepared to hear the news.
I'm looking for advice and tips on how to deal with AS and ensure I get good medical care. Specifically interested in hearing from those located in Berlin/Germany. Dealing with doctors here and getting them to treat you as opposed to "drink some ginger tea" isn't easy. I need to learn how to advocate for myself better ...
Some relevant information on me:
I did gain quite a bit of weight post a knee surgery last year. I'm overweight but not obese. Now on a mission to lose it and focus on yoga/muscle building to support my joints. Have been a vegan for 4+ years.

Thanks

Throughput my pregnancy I worked right up until 35 weeks work in health care. I didn't have any problems physically until I had a sore hip and had a hard time but as I moved I felt better so we assumed sciatica.

This week I had my normal very achy sore back and tension, however I am FTM and first time breast feeding so I am trying to figure out latch and the babe contact naps or to pump. So I am always sitting up right putting pressure on my hips and sacral joint. This week I decided to foam roll Monday morning to get some relief.

Monday evening I had so much pain I had a hard time to get into bed or get comfortable or even twist or turn to one side. Tuesday morning I was crying in pain trying to get put of bed, shower or sit down. I've been taking muscle relaxants and drinking water and resting as much as possible however I get stiff so have to get up and move around slowly. But I have a very hard time getting I'm and out of bed and moving around. Can't bear weight on my right leg. Can't bend over or even grab things lower then my hips. What is this? Flare? Hips moving back to normal postpartum? Did I pull something? Hip bursitis ? Called my Dr for an xray but have to wait unfortunately I'm on mat leave so have to take care of a 3 mo old so been trying to rest as much as possible with husband working from home temporarily but we can't do this forever. Help!

I (38f) am waiting for a diagnosis after being in a flare of some sort for 10 months. Finally doing better but I have gotten a cold and have been set back. Is this normal for AS? Or is there possibly something else going on and I need to keep the doctor investigating. Thanks