Excited to be on shot number 4 of Simlandi. It's treating me well so far - side effects are manageable, and I'm getting relief!!

To help people in the future who might find this post, my side effects are:

Almost immediate nausea for a few hours, can be completely mitigated with Dramamine taken beforehand.

Minor dizziness in combination with the nausea.

Injection site bruising/rash, this actually went away with my most recent shot.

The "Humira Flu" on day 2, i.e. stuffy sinuses, sneezing, and general cold symptoms. No fever.

All side effects are gone by day 3.

Pregnancy with AS

Hello 👋

I’m looking to hear about people’s experiences of pregnancy with AS.

I have a 3 year old and was diagnosed when she was 2. My pregnancy was fine and I think post partum triggered everything off.

I’d like to know

How you managed flares with pregnancy.

My flares are stiffness in my spine and very awful tendon pain in both hips/glutes. It can be hard to even walk around at times. So I’m a bit terrified of pregnancy impacting this.

What medication did you take during pregnancy? I am on biologics and celecoxib.

What things helped relieve your pain or ease it? I usually take dihydracodine for bad bad flares.

Thanks in advance 🖤
(Trying to decide if my body can cope with a pregnancy. I’d love another child but I’m trying to make an informed decision)
Xxx

NR-AXSPA diagnosis. Was doing well on Hyrimoz then started having some breakthrough pain so doctor tried to move me from every other week to once a week. That was 6 weeks ago. My last dose of Hyrimoz was almost 4 weeks ago because I've been in PA appeal hell since.

Have had trouble even reaching the doctor's office. Their phone always tells me the office is closed no matter the time or day, or at best that they're experiencing high call volumes. Either way I end up with the general answering service having to recount everything again. When I try MyChart most messages to unanswered or get a response a day or more later.

Have been following up with focus for the past week and finally spoke with a nurse and then an NP two days ago who told me my rheum was going to switch me to Simponi which is great because there's an infusion option and we can get going a bit faster that way, I just need to do some labs so the NP will write the order. She asked if I wanted a specific lab and I said yes. Two days later I don't have the order, haven't seen any activity in terms of an Rx or the PA, and am not getting answers in a timely manner on MyChart or via the phone per above.

I work in pharma. I'm very health literate and know how to advocate for myself. None of that matters because I can't actually talk to anyone to advocate to.

I'm feeling so scared and alone and also holy shit is this how it is for everyone?

Hey everyone,

I’m looking for recommendations for good documentaries, short films, or video features about Ankylosing Spondylitis (AS). 

Whether it's a deep dive into the medical side of the condition, a patient-focused story showing what it’s really like to live with chronic pain/spinal fusion, or something about management and treatment, I'd love to check it out.

I've come across a few short indie projects on YouTube (like In My Bones), but I’m wondering if there are any other well-made documentaries, long-form feature stories, or podcasts/series you would recommend?

Thanks in advance!

I have to work from 8am to 9pm today and of course today I wake up with bone deep aches.

I run a student program that, without me there is no backup (we are short staffed), and have an evening event an hour away tonight. (At least there will be food).

Of course I felt fine all week, but today I wake up feeling ran over. The funniest part of this? I felt this way every day for five years before taking hydroxycholoroquine.

I just started this programming in the summer and before I knew something was medically wrong with me, I assumed that waking up was a horrific experience for most people. Now that I've been in meds, bad days feel a bit more difficult.

Also the biologic I was prescribed is apparently not available at the specialty pharmacy I have to go through, so I'm back to the drawing board on getting put on one so I'm a little emotionally bummed cause my SI Joints burn even on good days.

Just having a rough time getting out of bed this morning knowing I'm working so long. 😮‍💨

Does anyone take creatine to help with mental and physical fatigue?

Have you had any issues with taking it alongside NSAIDs and biologics, since they can affect kidney function? I hear creatine can slightly increase creatinine levels but I’m not sure if there’s much risk to the kidneys beyond that.

Just wondering, especially if anyone had talked to their doctor about it. I will ask mine but I feel like so many doctors dont know much about supplements.

Lying on my back hurts my SI joint, but a cushion under it hurts my ribs (costochondritis). Lying on my left side hurts my ribs. Lying on my right side hurts my hip. Lying on my front hurts my neck. What do I do?! How do I sleep? I've never been one to sleep sitting up.

Please don't suggest calling my rheumatologist's office in the morning. I'm in England and that's not an option here. 😔

My rheumatologist has put me on Celebrex 200mg twice a day. I don't know if this is a common side effect or if I have the common cold, but I feel cold symptoms after taking it. I don't know if it's a coincidence but I felt "off" after taking it and then cold symptoms appeared

Plugged nose, running nose, sinuses, abit achey, overall just feeling like crap.

Is this common? Should I contact my rheumatologist?

I am a 42/m of Asian descent and I previously had a very active lifestyle. Last year in August I went on a hike and felt a strange pain in my knee. I also felt a lot of tension and crackling in my shoulders but it didn't really affect my day to day.

In September I was moving some furniture and that evening my right knee became very swollen and painful. I got a MRI on the knee the next week and it showed nothing, started seeing physiotherapists (ended up doing more harm than good), and after three months of not being able to walk properly nor getting better, I went back to the doc. More MRIs on my hips, lower back, and knee. There were some issues with my discs in my back but nothing major, in fact I got a steroid injection for my lumbar but it did not help. Finally got a gammagraphy/scintigraphy in April, 9 months after initially suffering the injury. At this point many doctors and friends were implying it was possibly a mental issue but the gammagraphy came back with inflammation in my SI joint and pelvic area which was a huge relief (relief and sorrow lol)

I immediately started naproxen/esomeprazol which disturbed my stomach and it mildly helped. I switched to Arcoxia and initially only took a half pill but upped it to a full pill daily and it's helped for the past few months. However, I am still not able to walk properly and took a week off to give my body a break and within 4 days I was back to barely being able to move.

I visited a rheumatologist and HLA-B27 came back negative. The working diagnosis of non-radiographic axial spondyloarthropathy, HLA-B27 negative, normal inflammatory markers. I'm still searching for a physiotherapist that can help me strengthen myself (if I can?) so that I can stand for more than 10 seconds and walk for more than 5m. I'm adjusting to these change and I'm reaching out to various counselors and psychological support to see if I can learn methods of dealing with this.

I'm also really fussed because I honestly can't tell what is good and what is bad. I used to think riding a bicycle was fine because there was no pain but now I worry it causes inflammation that I feel later in the day. My best days are when there is kind of constant mild movement and one of the worst is lying down on my back. Something happens in my back and I can flex and bend my right knee that will continuously pop and crack.

I am still trying to meet other rheumatologists and physios so my journey is still ongoing. This also all occurred in a new country with a new language so it's been challenging for sure.

Hey all! I was recently diagnosed and have been jumping through all the "normal" hoops to obtain my prescription. It's finally a real thing and should be delivered within the next few weeks once the pharmacy calls me to set up a delivery.

To make myself feel better about the whole thing, I'm making myself a box for the fridge to keep the shots in. If possible, would someone be able to measure the box the Simlandi autoinjectors (2) come in? I am impatient and want to start on the custom box to distract myself from the dread of starting these injections.😅

Also any advice is really appreciated! I've heard the shots hurt so I've been pretty worried about starting.💜

Hi - while motion is the lotion for AS, i would like to understand, how long you are idle at one place for a maximum time during day time.

Curious because - while doing work from home, I don't get a chance to move at all and I feel bad for myself.

ive been diagnosed for 3 years, i have really sharp heel spurs on both feet. and they slowly drill my shoes from the inside, do you guys experience this? lol

Hey fellow Ankylosaurs,

I don't know, if you have similar experiences, but my Axspa is just wild. The last MONTHS I felt bad every f*ckin day, couldn't move properly and everything felt exhausting. I've changed my biologic a couple of weeks ago and abt three weeks in I feel AMAZING. There's still pain in my SI joints and some other places, but I'm full of energy, flexible and "light" in a way. And SO strong. Its incredible.

Hard to believe it's gonna stay like that and I don't wanna have too much hope, but for now I feel overwhelmingly energetic.

The problem is: I always had these weird energy boosts with almost super human abilities (strength, concentration, sharp senses) and it never meant something good in the long run, usually the next flare waited just around the corner.

Anyone else with similar experiences? How do you deal with this?

FYI, I got GI issues and I blech a lot too lmaooo. AS diagnosed

Hello everyone! So in the last couple of days I have been experiencing something I haven't felt before. I woke up last night because I was laying on my side and it felt like my ribs were out of place or dislocated or like moving around?? I have had rib pain before that was more like costo or pain where they connected to my spine in the back, but never like they were popping out of place? Just a disclaimer - I don't know if this is actually what was happening or if it just felt like that's what was happening. Has anyone experienced something similar? Any tips to make it go away? I am on adalimumab, but I can't take any NSAIDS because they messed up my liver.

I'm on my 2nd biologics and I was diagnosed 2 years ago. I still feel the pain everytime and my crp is 30+ in the past 1 year.

I feel biologics are also not working for me.

I see many posts that after taking biologics ppl are doing their normal activity or work. Does it mean your crp level is below 5? Thanks for replying

Hi. I have what seems to be a bad case of enthesitis in lower calf/achilles tendon and have had it for about a month. In that time it has not gotten any better and I am wondering where to go for medical help. Can a rheumatologist help with this? Or a family doctor? I have had AS for decades but in the past enthesitis always resolved itself with conservative treatments which isn’t happening this time. Help!!

My si pain (inflammation) doesn't feel better after movement. Infact I feel it's worse after swimming

I’m now experiencing my first flair up of SI joint pain and I’m having to use a damn cane to move around is there really anything you can do to help with this because I’ve done my recommended stuff from my rheumatologist but this shi hurts feels like my hip is broken

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?

Update: Thank you everyone. I really appreciate you all taking time to read and comment. I am trying to get in contact with my doctor and if it gets bad again, I will contact my GP for immediate pain relief.

Mods: My apologies for the previous two submissions. I did not understand how to do the read the rules thing.

As of writing this, its 5am. I have been awake for two days with excruciating back pain. I was diagnosed with spondyloarthritis in January.

I cannot breathe in normally due to pain, and no medication is working. I have numbness in my hands as well. I have been under severe emotional stress lately, which could be contributing to all of this.

If I go to an ER, what should I expect?

What is the typical procedure for such issues?

Will they actually be able to help, even just temporarily until I can see my specialist?

I do not frequent the ER ever, so I really don't know what to expect as a solution to this pain. My apologies if this is a dumb question, I am really just desperate and lost on what to do.

It feels like my spine is curling into itself!!!

Thank you.

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.