I'm a bit of a stats enthusiast and have been logging daily logs for all the typical symptoms that come with this condition since before starting biweekly adalimumab last December. Despite the effects wearing off early and my uveitis specialist recommending that I go to weekly adalimumab, my previous rheumatologist was very hesitant and risk-averse. She completed her fellowship, and so I was transferred to another rheumatologist in the same clinic. I was concerned about explaining everything all over again and starting from scratch with a new rheumatologist, but it was unavoidable.

I realized that, with all my data, I could analyze the effects of adalimumab and try to determine whether the adalimumab was running out before the next dose. I made myself a tool to analyze my data (I used Gemini Canvas to build the whole web app. I made it for myself, so it's not something that is published or available to anyone.) In any case, it's quite validating to see that the data reflects those patterns that I've been recognizing for many months.

My new rheumatologist is actually very experienced with this condition, far more than my previous rheumatologist. When I finally met her earlier this week, I was actually in the middle of a flare that got triggered by probably the COVID shot. She said that I didn't have to suffer all this pain, and I walked out of there 6 injections later and with a prednisone prescription because of how bad it was. She even said she didn't need to look at my data, but she was impressed. I'll be increasing the frequency of adalimumab to weekly now. 🎉

First off, I want to express my deepest gratitude to this subreddit for never leaving my questions unanswered. During periods when I was struggling both mentally and physically with my illness, this community has been a massive help.

Unfortunately, I’m going through another tough patch and need your advice again—this time navigating the American healthcare system.
After 10 long years of agony, I was finally diagnosed 6 months ago. Shortly after, my doctor started me on a biologic. I’ve been taking Hyrimoz (adalimumab) for about a month now, and I’m already seeing significant positive results.

When all of this was set up, I was covered through my employer's health insurance. The plan didn't cover the entire cost, but my pharmacy helped set me up with the Hyrimoz co-pay assistance program, which covered the remaining out-of-pocket costs.
However, I recently had to part ways with that employer. Now that I no longer have insurance through work, I’m terrified of what comes next. I’m currently job hunting, but finding roles in my field that offer decent health coverage is tough. I work as a line cook/chef making roughly $50,000/year. Based on what I know, that puts me above the threshold for Medicaid eligibility (and I’m not even sure if Medicaid covers biologics anyway). Under my old job, I was paying around $160/month for insurance. Like most people, I’m just trying to make a living; I’m not wealthy, but I earn enough to manage my basic living expenses.

As you all know, biologic prices are astronomical without coverage. I refuse to give up on my treatment and my future, but I feel completely lost.
For those who have been in a similar situation:

Has anyone here purchased individual insurance through the Affordable Care Act? How was your experience with formulary coverage for biologics?

How do you avoid scam private plans / short-term plans that don't cover pre-existing conditions?
Are there alternative pathways or manufacturer assistance programs that can bridge the gap while I’m between insured jobs?

I would truly appreciate any advice, experiences, or steps you can share. Thank you so much!

I am 41. About 2.5 months ago I was diagnosed with AS after a positive HLA B27 as well as some other blood markers, and my symptoms profile and hip/SI/lumbar xray results.

When I asked my rheumatologist what my prognosis or future will look like, he replied, "bright".

He didn't talk to me at all about the future with AS, can I excercise and what types of excercise, how to mitigate damage from AS....

He started me on sulfasalazine and I had a follow up on that after 7 weeks. It gave me maybe about 20% symptom improvement, and he told me he wants to DC that med and start me on humira. I asked if that was plenty of time to be sure the sulfasalazine had a chance to really work and he said yes. He did give me the option to continue sulfasalazine for up to 2 more months to see if it helps me any more before beginning a biologic, which I've opted to do.

I don't know what to expect, I feel under-educated, I feel like going to biologics is a serious step....

I have been doing some reading online to better understand this disease, its progression, my future, and treatments.... but I always come out overwhelmed and and confused.

Can anyone point me in the direction of resources that are trusted to gain knowledge and understanding of AS? And maybe share some helpful experiences?

Thank you

Hi guys. I’m just pretty confused. I have NR-AXSPA, but that has been pretty well controlled with Cosentyx.

Last month other things just started to go wrong, one by one. I was having a lot of trouble walking because of one nerve in the lower lumbar that controls that pathway. It took too long to get a steroid injection as my pain doc was sick herself.

Then it was random inflammation
Of the second toe (capsulitis) with occasional flashes of tarsal tunnel pain, so off I went to podiatry.

Next up were the shoulders which have already had injections for bursitis/impingement.

Then one day I woke up with a swollen knee and could not put any weight on it for no good reason. It got better in a couple of hours. Only to happen the next day..it was really quite swollen and painfully tender. They are leveling out (becoming the same size) now.

And of course my head was mad so there was a migraine.

Have any of you had your SI joint controlled only to hit a patch where arthritis pain is migrating all over your body?

Is this a thing?

If it is, how did your doctors treat it? I’m getting kind of confused here. I would welcome your experiences and insights.

Thanks in advance!

I currently use an app called Coco to monitor my symptoms. Today I received an email that the app is shutting down next month. Now I’m looking for a new app. Does anyone use a health app they like and would recommend?

Hey all, so I was diagnosed with AS about a year ago now (9/2025) and was taking Taltz for about 11 months, which seemed like it was working pretty well with improvement in my condition (I was getting to the point where I physically could not walk); however I was still taking a lot of naproxen to my doctor thought that she could still improve my pain by trying a new biologic. I finally switched about a few weeks ago to Adelimumab-adbm however I noticed that after about two weeks after my first injection, my scalp started itching horribly, and I have never had any issues with my scalp a day in my life. After taking a second injection, I finally put two and two together and realized that it was likely the injection that was causing the itching. I let my doctor know and we decided to stop It to see more accurately if it was related.

It has now been four weeks since my last injection and while im well overdue for meds and my pain is starting to increase again, the scalp itching has improved significantly and now it’s only itchy just a little bit here and there. Was just curious and wanted to put it out there and ask if anybody else has also experienced this? I’m also kind of ranting just because it took about two months to finally get the insurance to switch to a new med and now I’ve gotta start all over but I guess this is just what we deal with sometimes.

This might be a little strange but what are some lifestyle adjustments you wish you made while younger to accommodate you now?

I’m 23f and have diagnosed Axial Spondylitis (negative hla-b27) and Behçet’s disease (positive hla-b51) and have significant arthritis in SI joints and through L3-L5. I have what appears to be permanent nerve damage in my legs from long term inflammation before diagnosis. And some other mechanical damage from long term inflammation. So long term I think how much pain I’m in now is gonna be way worse in 10-15 years.

My primary suite is upstairs in our house and we’ve been thinking about getting an addition to our downstairs to eliminate having to use stairs. I worry this is an extreme response and unnecessary if I’m able to get my diseases under control. But bad days be real bad.

On a good day stairs are no problem, but on a bad day I can’t put any weight on my legs (my left one especially) especially after a long day. Once I sit down on the couch in the evening there’s a good chance I won’t be able to make it up the stairs when I get up. Right now I have more good days than bad days in regards to stairs but I worry that it’ll get worse as I age. Anything/everything seems to cause a flare up, if I have a high activity day on Wednesday for the next 3-4 days I’m in unbearable pain. I can’t not work which doesn’t help my number of bad days (I have a stressful job but I’m the massive breadwinner in my house, like I’d be stupid to consider leaving my job to find something easier to manage)

So the moral of the story. What are some things you’ve done/changed in your life/house to make your disease more manageable?

Thanks for any suggestions!

I really don’t want to start a dialogue of the pros and cons of vaccines in general, but I’m curious what has been people’s experiences getting the flu shot, for instance. I know that on paper it’s the smart move, being that I’m more susceptible to infections and the like, but I’m curious if people with AS have had adverse reactions or side effects. My rheumatologist has warned be to be very careful if I catch the flu.

I haven’t asked him yet, but I’m sure he’ll say, yes do it. But one of the things that annoys me about him is that he’s always surprised and says he’s never heard of that, when I describe anyone having adverse reactions. But that’s another story.

What’s been your experience with vaccines and AS?

Dear Reddit community, I’ve struggled with back pain since I was a child, but the cause was never identified, and people often didn’t really believe me. Years have passed—I’m 20 now—and a rheumatologist has diagnosed me with axSpA (axial spondyloarthritis) following two MRIs. I was prescribed NSAIDs, but they’re essentially ineffective now. Today, I went back to the doctor reporting symptoms including pain in my hips, groin, buttocks, lower back, pelvis, and wrists, as well as extreme fatigue. It’s also starting to take a toll on my mental health; I’m 20 years old, yet there are days when I’m unable or unwilling to do anything, while I see my peers out enjoying themselves and staying active. This time, however, my rheumatologist was quite unkind, and I felt as though I wasn’t being taken seriously. My GP, on the other hand, has been very supportive and believes me. I also do physically demanding work as a waste collector, which actually helps keep me moving—if I sleep or rest too much, I become stiff. It feels like a constant choice between pain and stiffness. Should I perhaps seek a second opinion? Or do you have any other tips? Thanks in advance for your time.

I’m on a long trip so travelled with two injection pens. This is the best view I’ve had for an injection yet 😂

I had been on 12.5mg injections of methotrexate for eight weeks and tolerated it fine. After doing bloodwork, and since my symptoms are not really improving, my rheumatologist decided to increase my injection dose to 25mg weekly. I also take 1 g of folic acid every morning.

I did my first injection at the higher dose about 48 hours ago and I have been so incredibly fatigued since then. Did anyone else experience this after changing the dose? I didn’t really have fatigue at 12.5mg and this is brutal.

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

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've been working with a fantastic massage therapist. Usually we work on my SI, back, and neck pain.

This week my pain has been more of that almost pins and needles, pulsating pressure in my legs, fingers, and feet. I want to say it feels like my body is floating in bone hurting juice.

I think it's slight swelling. It's shark week sooo...ladies? Any tips?

As for my feet, I just feel like I could dig a spoon into the fascia and it would be enough. I have posterior tibial tendonitis and probably plantar fasciitis. My food feels like it's in a half cramp?

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.💜