Is it even worth it? Motion is lotion or whatever but I can’t do a series of a small number of very basic physical therapy exercises without being so inflamed and swollen the next day that I cannot get up. How am I supposed to deal with muscle tension and atrophy due to this disease if trying to correct it makes me extremely ill?

I got recently diagnosed with AS and most of my symptoms are on right side. When I am in a slouching position and straighten up, I immediately get this popping near right shoulder blade/rhomboid. Theres not a single time that the popping isn’t there it always is. Although I don’t have much pain but the popping only. When I do the stretch shown in the pic, I feel pain on my outer right arm too and near rhomboid too.

Is it a disc compression issue or just a symptom of AS, DOES ANYBODY EXPERIENCE THIS? EXPERIENCE ANYTHING SIMILAR TO THIS? HAVE ANY KNOWLEDGE ON THIS? If so, please share it, I’ll be grateful to you Thank you.

I'm in a bad flare right now and all I can think about is having AS. It consumes my entire daily thoughts. I'm sick of it.

How can I become myself again instead of the 'chronically ill person'?

I hate feeling sorry for myself. I want to be happy. But it's hard. Sometimes all I can do is lie in bed and cry.

I've stopped going out. I've stopped doing my hobbies. I'm scared of seeing my friends because it feels like all I talk about is my pain.

How can I find balance between living my life but also acknowledging that I have an illness that brings me so much pain?

I was diagnosed with ankylosing spondylitis three months ago and started biological therapy shortly after. I’ve received about five injections so far, and honestly, I felt a massive improvement right after the very first one—it literally felt like my pain was completely lifted away.

I’ve recently returned to work after being on sick leave for seven months, and everything has been going well physical-wise. However, I’m wondering if anyone else is in a similar situation? Since going back to work, do any of you take medication to help calm your mind or lower anxiety?

Even though the physical pain is mostly gone, I still feel like I'm constantly on edge and on high alert. I'd love to hear how others have navigated this transition.

I have not really had major problems with my lumbar, but after I started taking Methotrexate, my lower back can not get a break. It used to be ok after I woke up and started my day, but lately It's hurting all day. I need to know if anyone has had this problem and if you can share what you did to help. P.S. The methotrexate did help the other pains in my back, like my Rhomboid Major

My insurance called me Friday and didn't leave a message, but I saw in my rheumatology portal I was prescribed Simlandi that day. I saw my rheumatologist a month ago and did the bloodwork for him to prescribe Humira and he put in the info for the prior auth then; no one has contacted me and insurance didn't call again. Insurance was probably just calling to tell me I had to do the biosimilar. I'm pretty sure both my doctor and insurance were open today; but I couldn't call until after hours to get an update.

I'm going to follow up with my insurance tomorrow, but uh, what now? The doctor had told me that it would be mailed to me... My friend's told me they had to do the first dose of their biologic with doctor's supervision. Maybe I should have asked more questions at my last appointment...

Does anyone have an idea on how long it took to receive Simlandi after being prescribed? Did you need to go to your doctor to learn how to use it or just have at it? How did it arrive? I live in an apartment and the delivery guys for some services just throw everything outside.

Hi all, does anyone feel nauseous in the morning after taking Etoricoxib the night before? I take 90mg at 9pm and was fine for a couple of months but now feel pretty sick in the morning when I wake up.

This is quite a late connection for me but I realised today that I already knew movement helps my back, SI and hip pain. The morning melt, as I call it, as if everything is thawing out from its frozen stiff pain. But also, it helps lift the foggy, fluey feeling sometimes. Not consistently but this weekend it successfully did.

Does this happen for anyone else?

So, for some context, I am 19 years old and a university student with a rather complex medical situation and yet nothing is diagnosed. I have been looking into fibromyalgia but was suggested to also look into AS due to the similarities and comorbidities, and I do follow a lot of symptoms (almost too scarily close).

Yet, this is where my title comes in, I still can't bring myself to push it. I see people talking about flare ups, and just how horrible the experience can be and I currently don't find myself like that. I experience a lot of daily experiences that are constantly bothering me but never a distinct "flare".

I have probably had distinct issues that resonate with AS for about a year and as much as I understand that I could have caught it early, I am still struggling to persuade myself to talk to someone about this because it's not as commonly known about and so I am scared that I won't be able to correctly advocate or get the right tests - not to mention how being wrong or getting misdiagnosed could cost me a lot going forward.

Any advice? I know this may be a long shot, I am currently sat trying to deal with pain, whilst going through Reddit, so I wanted to at least give it a go reaching out to people who may know.

Hey everyone,

Just wanted to share a frustrating experience and see if anyone has experienced the same. I got diagnosed with AS a couple of years ago. My initial MRI showed mild marrow edema suspicious for inflammatory sacroiliitis

I’ve been on Humira, Cosentyx, and now Remicade with varying degrees of improvement from pre treatment but the pain has not gone away. I had to beg my rheumatologist to increase my Remicade dose from 3 mg/kg to 5 mg/kg because she decided to underdose me for some reason. I used to be so active, and now I can barely do anything. I used to play tennis 3-4 times a week, and I was a damn good player. Now I’m just a shell of myself, and every time I play I suffer for 3-4 days afterwards.

I got another MRI recently that shows there’s no edema and now just a possible small erosion where the edema used to be.

I’m still in a lot of pain. I have been doing PT, I’ve gotten SI injections, I take indomethacin three times a day. I feel like an impostor that I can still have so much pain when it was initially mild and the most recent MRI barely shows anything. I feel like everyone is going to stop believing that I’m suffering.

I’m tired and fed up with everything, I want my life back so badly. If I sit I’m uncomfortable, if I’m active I’m uncomfortable. It’s like there’s no place to hide. The only time I’m vaguely comfortable is after I take a gummy and lay on my heating pad. Some days I feel like it’s just all in my head, like I can’t possibly be hurting as bad as I am with my imaging. Y’all please tell me it gets better, I’m 2 years in and I see no end in sight.

Quick background: Newly diagnosed. Confirmed blood test for gene and confirmed via MRI. Found fairly early due to terrible uveitis, although struggled with terrible “spells” of very lower back pain for a few years.

I was started on Naproxen for a month and I literally felt amazing. I didn’t realize how stiff I really was daily and just living with it. Doc was happy bc “NSAIDS usually work or they don’t”. As in no real grey area. I going on month 2 and then going to swing to as needed. The past few days though I am in pain and feel like I haven’t taken Naproxen but I have as prescribed. Today my pain is pretty terrible. So now I’m confused. Do NSAIDS just stop working all the sudden?

I guess I am also confused what a flare is as I’ve seen so many people have so many different symptoms. Midday yesterday I got so fatigued, like the flu hit me or something, and had to go to bed. Today I’m in pain. The pain in my lower back and but its awful when sitting and when getting up and down I’m trying not to scream in pain. I did see someone else’s post on flares, so I’m reading that as everyone answers.

Has anyone failed Yuflyma? If so, which biosimilar(I don’t have insurance) has worked for you? I’m going on my 6th month and there’s hardly to any change. I’m still in a lot of pain.

I'm newly diagnosed and looking to build myself a travel bag with "must haves" to bring when I leave the house.

I'm a 32 year old woman who has the fun gastrointestinal features and bladder irritation as well.

What items do you keep handy?

Hello all,

Recently had blood work come back positive for the marker for AS and have had XRAYs done and sent to my rheumatologist to see if I have AS.

I was curious, what did a flare look like for those who are diagnosed before you started biologicals?

Any tips for managing a flare up?

Back in August, there was a power outage in my part of town. My house was out of power for 17 hours. Unfortunately I had just been delivered 6 fresh doses of Idacio (Humira biosimilar) but there was no way to keep them cold during the power outage.

I contacted my sponsor who contacted the manufacturer, Fresenius. They reviewed the length of time (17 hours) and the temperature they would have been subject to, and came back saying that spoilage was unlikely and I should continue with using those 6 doses.

It's been 6 weeks and everything was going ok, but since the latest dose I took 1 week ago, I noticed a good deal more pain than usual, and I'm wondering if it could be the dose I just took (and the last 2 in my fridge) have spoiled?

Has anyone experienced this type of situation before?

Hiiii. Yall might recognize me as the worrywart who posted a month back being nervous about starting Enbrel. I’m happy to say I swallowed my fears and am five (and a half…) doses in now and seeing positive effects with very few negative ones. So thanks for that!

Unfortunately this morning’s injection went awry somehow. I think the pen injected slower than normal? I didn’t hear the second click after the usual amount of time passed so like a moron I lifted it without looking at the window first and it spat the rest of the medicine on me lmao. Also bled worse than normal for some reason.

All my supposed “24/7” numbers for my care team are offline for the weekend so I come to y’all!

I did not get my full dose this morning. Can I expect to see a small slide backwards over the week? Will I have side effects from not getting the full dose?

Just wanna know what to expect so I can prepare accordingly. Especially since my low back has already been tweaking all week. 😂

I’m a 35M living in singapore and working as. Network engineer.

My disease has progressed recently and flares can last up to months. Back in my 20s the inflammation could come and go as quickly within a week.

I have to skip work for up to two weeks at time and think that this is not sustainable long term for my career and probably could get fired. I haven’t told my boss about my condition as I’m afraid of the consequences.

Would like to ask how do fellow patients with AS earn a living and what kind of jobs do you guys go for? I would assume a remote job is the best but I can’t seem to find such jobs that allows me to work from home entirely.

Please help give me a strategy for rheumatologist if you can! Year 16 of chronic joint pain that has become debilitating and spread everywhere.

I am about to see the 5th rheumatologist in 6 years. Every single time, they want to punt me out of their office. “You don’t have rheumatoid arthritis, there’s nothing I can do.”

Yet there’s so many diseases that don’t show up on the tests! I know spondylitis might not be what I have despite it reflecting my symptoms but I have to figure something out!

Hey guys, recently got diagnosed with spondylitis after 3 years of right knee joint extreme inflammation.

My medical history with this is quiet extensive with many many different doctors. I've been to multiple rheumatologists and traumatologists. I'm HLA-B27 postive and 21 years old. Basically, anti-inflammatory medications haven't worked at all and some like Methotrexate had unpleasant side effects.

A year ago, I was operated by a traumatologist (knee arthroscopy) with the hopes of cleaning up the liquid and stopping the inflammation.

Tldr didn't help at all and after a couple months after the operation my knee started to hurt like hell. Each step sometimes feels like a gunshot to the knee. So basically it made the situation even worse. Can't do any physical activity like even going to the park for a walk without pain (I could but would suffer the consequences :) ). Traffic jams in a manual car are a nightmare.

I changed to a new rheuma and he said that I would need to try biologics. However, he changed his decision after talking to other doctors and suggested the radiosinoviortesis treatment. Since I only have problems with my right knee a local solution makes sense.

Currently awaiting a call from oncology for an appointment which is taking a while because I changed to the public healthcare.

I have been on this subreddit for a few months but haven't seen anyone talk about this treatment.

I wanted to ask how was your experience with radiosinoviortesis. Did it help? How long did it last for? Is it temporary or permanent solution? Any tips for post surgery?

Thanks a lot guys!

Hi all,

I’ve previously been on Humira and Simponi, and while taking both medications, I was almost completely asymptomatic. However, in both cases, my symptoms returned at around the two-year mark. After more than a month without improvement, I decided to switch biologics. In both cases, drug-level testing came back positive.

Now, the exact same pattern seems to be happening with Cosentyx: I was asymptomatic for nearly two years, and my symptoms have returned around the two-year mark. The main difference is that this time, the flare started after a delayed dose.

My doctor explained that the rate of immunogenicity with Cosentyx is less than 1%, so testing for anti-drug antibodies is not available.

What would you recommend in this situation? I’ve taken the delayed dose, but I’m still experiencing symptoms.

Looking back at my experience with Humira and Simponi, is it possible that both times I was actually experiencing temporary disease flares rather than losing response to the biologics? Could I have switched medications unnecessarily when the previous treatments might have started working again?I'm saying this because I often see threads in this sub for people mentioning temporary flares.

Thanks in advance!

I am 37F and was very recently diagnosed with AS after 20 years of symptoms. I have SI joint erosion visible on x-ray, with some fusion on one side visible on MRI. I am (weirdly enough) HLA-B27 negative. My chief complaint is intermittent flare ups of extreme SI joint pain, to the point that I can barely move. Flare ups can be months apart, or much more frequent. When I am not having a flare up, my back does not hurt at all.

Starting in 2022 I began getting occasional bouts of uveitis. I got mononucleosis when I was 15 and my energy levels never recovered, so I don't know if my constant fatigue is due to AS or something else. My sleep quality is very, very poor, so I am on several medications (trazodone, propanalol, melatonin, magnesium) to enable me to sleep through the night. I wake up every hour or two without meds.

Are any of these common/normal experiences for people with AS?

Pain is minimally responsive to NSAIDS, but only if I start them within minutes of noticing the pain. My pain was responsive to prednisone, but cannot be on steroids again because of diabetes. My insurance said no Humira, but agreed to Simlandi.

What should I expect moving forward? Would success on Simlandi just look like fewer/no flare ups? Any tips are greatly appreciated!

Hey all, I was diagnosed with ankylosing spondilitis today. This is after having sacroilitis, a positive HLA-b27 gene, and 10 years of seeing doctors. I have a really annoying thing where I fall asleep and I wake up in the middle of the night with a sore lower back when I sleep on my back or sore upper back if I sleep on my side.

I saw a rheumatologist today and was diagnosed with AS and I was started on high dose ibuprofen. I am a 28 year old male about 6’2 tall, living in the US. the gym also makes my pain worse I can’t do squats or deadlifts anymore. I do stretches and yoga at home that significantly helps it. I do it for 1 hour at night and then 1 hour at 3 am and then I start my day usually drained and ready to go back to bed for the next day.

But I reallly would like to have it to where I can just sleep through the night and not have the lower back pain because when I get a full nights rest I feel so much better.

I take Magnesium, and MSM, sometimes melatonin, I work from home on the computer pretty frequently but I do walk my puppy each day and get around 10k steps. I also gym very lightly about 1 day a week. I also noticed I get upper back stiffness now when I wake up too but that’s only when I sleep on my side typically.

I’m hoping the Ibuprofen is enough as I am afraid to take bionics, I pride myself in my very healthy immune system as I have not been sick in years.