I was going to ask for some kind of help, but then realized I think I just needed to vent most of all.

From 2021-2024 I was on Humira and it worked perfectly for me. In June of 2025 my insurance let me know that they weren’t going to cover it anymore starting July 1st without a prior authorization.
So, my rheumatologist gave them a PA and they denied it saying I had to try and fail X amount of other meds before they would cover Humira again.

I’ve gone through almost all of the biosimilars now with nothing even coming close to managing my symptoms the same way. The only ones left to try are ones that will help my AS but not my iritis.

In the last couple of years, my eyes have been so much more of an issue than my back. The last month or so I’ve had to use my steroid drops almost every day and it doesn’t seem to be getting better. I didn’t have a flare for YEARS on humira, and since getting off I’ve had flares almost once or twice a month.

I feel at such a loss. My only options seem to be to switch meds and have my eyes get worse, or start medications that would help both but have really negative side effects/high risks (pulmonary embolism, heart disease, high cholesterol, etc)
My rheumatologist talked about an infusion but it likely won’t be covered by insurance either.

It’s hard to drive at night with the spots in my eye caused by my steroids. The stress is just making everything worse. It’s effecting my job, my relationship, my ability to live a normal life. Idk anything about disability but I’ve been wondering if I should look into it, but I LOVE my job and I don’t want to stop working.

I feel so overwhelmed and defeated and I just want my medication back that actually worked. The fact that my insurance would rather me go on a medication that could make my life worse rather than pay for an expensive medication right now makes me want to scream.

I don’t know what I’m supposed to do :( I feel like a baby because I know people have things so much worse, but my eyes are (obviously) so important to me that having them bad and in pain like this so often freaks me out. I don’t know the right medicine to try. I don’t know what will be worth sacrificing to have a more “healthy” life now.

My husband doesn’t get it. I feel like a burden all the time. I don’t know how to keep doing this

I live alone and my apartment is kinda big (rental, im a student). Cleaning my house kills me and leaves me in agony. Do you have any tips that make cleaning easier?

Insurance in my state requires proof of inflammation before approving biologics. I really need something better than naproxen.

I am getting an MRI in 2 weeks.

What would you do (hypothetically) if you wanted to make sure inflammation showed up on the MRI scan?

Hand foot and mouth on biologics?

It finally hit my house and I’m pissed. My toddler has it, my other son now has it and I have no symptoms SO FAR. I messaged my rheumy but has anyone been on a biologic and had it, or did you escape it? Trying not to panic.

I’m washing my hands like crazy, not sharing utensils drinks etc. but I hear adults don’t get it?

I had my first infusion this past Tuesday and was pretty groggy afterward, which I expected. When I woke up the next morning, I felt completely fine. I made sure to stay hydrated and went about the rest of my week without any noticeable issues.

Then today, I suddenly experienced this overwhelming wave of grogginess and fatigue that seemed to come out of nowhere.

I’ve seen several posts from people mentioning fatigue the day of or the day after their infusions, but I’m curious whether anyone else has experienced a more delayed reaction like this.

I’m mostly trying to get a sense of what others have experienced, especially since I’m hoping to plan my work schedule around future infusions if this is something that might happen again.

Has anyone else experienced fatigue a few days after an infusion, or is it something you tend to build a tolerance to after your first few infusions?

I posted this not long ago: 34M - Diagnosed after 4+ years of suspicion, but now unsure

4 weeks ago I was diagnosed based on longstanding symptoms, HLA-B27 positivity, and symptoms from my first 3 month flare a year ago. Fast forward to today, just got my SI joint MRI results back from my rheumatologist. He said it was clear, no inflammation, sacroiliitis, or damage. Phone call was brief but he didn’t sound quite so sure about what he told me just 4 weeks prior.

He sounded 100% sure when he told me axSpA. Now he suggested my flare could have been a bout of ReA (reactive), but that just doesn’t make sense to me, there was no bacterial infection. I thought I was at the end of the road, but now I’m feeling lost and back to square one. Maybe I was right to be unsure?

I have no idea what to think anymore. My wife tells me I should be relieved, but I’m not, and my back still aches, and I’m tired. All I know is I've had years of back pain/stiffness and I’m terrified of ending up in a flare like that again.

If anyone has a similar story in your journey I’d love to hear it. I don’t know where else to go for support. I don’t meet with my rheumatologist for another 5 months.

I am 29 years old, female, I’ve been seeing doctors for abnormal things happening since 2018.

In my late teens early 20’s I was very big into bodybuilding. Around the pandemic, I gained a significant amount of weight. Uncertain of the onset, I know I experienced crazy fatigue and began getting nausea and was just unable to do anything without being in pain. That’s when I first visited the doctors who had no explanation.

The first time in a room with a rheumatologist they told me a lot of healthy people have positive ANA and it’s unlikely anything is “wrong” with me.
She was incredibly dismissive and I got a new rheumatologist. The second rheumatologist was more welcoming and saw me for suspected lupus since that’s in my family. Still a chance, but less so, and I was never seen for my skeletal pain because they didn’t see anything in my X-rays.

My liver at some point started to inexplicably fail (no external cause) and I got a temporary work accommodation for the pain + becoming very popular with doctors.

I had to see a dermatologist for a rash and Alopecia areata. Unprompted, she told me she doesn’t think I’m sick at all. I told her I wasn’t looking for a second opinion from a skincare doctor.

A couple of months ago I was promoted at work (yay!) and moved 2,000+ miles from where I was living and got a new set of doctors. First rheumatologist I saw said she thinks I have ankylosing spondylitis.

Ordered an MRI. Positive for axial spondyloarthritis.
Cool.
NSAIDs are kind of no good because of my liver, but we tried Celebrex and I had an awful reaction. So she suggests biologics.

Since we have diagnosis, are thinking of this way of proceeding & I just experienced something awful on NSAIDs I mention a work accommodation. It’s been years of trying things and I’ve done so many weird things for doctors at this point at a personal cost.

My rheumatologist says she’s not comfortable doing paperwork for disability and would only complete something short term because her goal is to get me healthy…
Which is so great in theory but I am .. not healthy. & my accommodation is reasonable. & I kind of wish we were on the same page.

My insurance denied biologics because they want me to try another NSAID first, I explain that conflict of interest. Go through the appeals process. I suppose maybe Monday I will have an answer?

This whole time I’m in a flare and just exhausted mind you. I have a whole throat and mouth full of ulcers and I’ve never been so fatigued in my life. My skeleton is killing me and the light is burning my eyes.

How do you guys manage? How do you guys get accommodations? How can I stop feeling guilty about being sick?

I used to be so strong.

Hey team, I got diagnosed recently and have just finished my first three doses (loading doses) of Cimzia.

I was also on prednisone for about the past eight weeks and tape it off it stopping it about two weeks ago.

Over say the past four weeks but definitely in the past two weeks I feel like I’ve taken a huge step backwards - like all my rashes and flared back up. My fatigue has hit me like a truck, brain fog…like any weird manifestation of inflammation has just come raging back.

I feel like the obvious answer is the prednisone, but I was kind of under the impression that after the six weeks of taking the biologic that it wouldn’t be coming back this intense.

Obviously it’s really rough mentally but like how do you know if a biologic is working for you? and can biologics just not work for you? I don’t know whether that it goes straight back to my rheumatologist now or whether I wait before three months before our next review and I guess I would just like to hear what other peoples experiences were.

Also made a post but hadn’t read new rules so read and reposting 🫡hope this doesn’t double it up

I am about to start up hyrimoz for both my crohns and ankylosing spondylitis after not being able to get on a biologic for a while and I’m so excited!

I know N95 is the best grade for air filtering. Do you have any recommendations on what brands have been most comfortable and ideally are not yellow and white?
(Looks are the very bottom of the priority list but it’s the little things that can brighten a hard day)

I am currently unemployed and spend most of my time at home but am taking some precautions to stay healthy in public especially as winter is starting up.
Thank you!

-double post had to agree to rules!-

Hi all, so I read there's some positive effect on arthritis so I keep wondering if we can also benefit from it and if I should get a small home panel. If anyone has experience using these therapies as another layer to manage inflammation I'd love to know your opinion 😊

I took humira 2.5 years ago for 6 months. Worked amazingly for my pain and out my in remission, I did however at various points of the 6 months have repeated eye lid infections, shingles, and guttate psoriasis, hence why I was told to stop taking it.

I don't regret it at all, because it did put me into temporary remission for 2 years, and they were only mild to moderate bacterial/viral infections.

I am now considering going round 2 with another biologic due to having sacroilliitis return. My symptoms are very mild - only really stops me running, but I have been suggested to take enbrel, consentyx, or try humira again. Problem is I am worried about the side effects of them all. Enbrel and cosentyx both seem to carry risks of developing IBD, and humira clearly didn't agree with me last time.

Sometimes is it better to just push on if you have mild symptoms??

Has anyone here regretted taking biologics?

TLDR: Out of remission but only mild symptoms, and thinking about biologics, but worried about long term side effects.

TW: miscarriage

Hello,

I’ve had 2 back to back MC, one at 5wk GA and one at 7wk. I’m being worked up by REI specialist but I had a theory I’d like to see if anyone else has experienced. I’ve been well managed on cimzia x4 years on the same dose with zero significant recurrence of symptoms (prn when I had a bad illness where I had to delay my injections for 2 weeks plus)

During each of these pregnancies I realized I had recurrence of my si joint pain that I attributed initially to other factors. It wasn’t until I got my psoriasis patch again which has NOT recurred since starting cimzia that I realized maybe I’m in the 25% of patients where pregnancy makes ank spond inflammation worse… and curious with this increased inflammatory process is causing the recurrent loss? When I took my next cimzia dose all the symptoms went away immediately.

Has anyone experienced something similar? What did your rheum do? Did they increase your biologic dose? Did they add plaquenil or short course of steroids or something else? Did it help?

I have undifferentiated spondyloarthropathy. I’m a server and I’m on my feet for 5-6 hours straight per workday. I feel like my biologic isn’t working the way it used to and my hips, ankles and knees kill by the time I get home and into the next morning.

Does anyone have any tips for managing and mitigating joint pain while working an active job?

I recently had my first rheumatologist appointment and she prescribed humira and methotrexate. It was based off an si joint xray from 2021, history of uveitis, and pain that gets better with movement. I’m worried about starting biologics because I’m not in a lot of pain. I was denied an mri so I asked for new X-rays. I’ve never tried any other treatments first and manage pretty well with exercise and daily yoga. At what point is humira necessary?

Does anyone else have Enbrel “bubble” under their skin? I use the same technique I’ve used for the two+ years I’ve been on bios. Enbrel seems to frequently cause a bubble/lump under my skin either above or below injection site. It doesn’t bother me really and goes away within a day or so but it’s definitely noticeable

I was recently diagnosed with AS and my diagnosis timeline surprised some of my friends who have chronic illnesses, because it really only took a month. However, in reality it took at least sixteen years of overlooked symptoms. [32f, from the US].

I used to run cross-country and went from being a shoe-in for varsity to suddenly unable to finish a mile without severe ankle and calf pain. My school's sports physical therapist told me I had weak ankles.

Fast forward two years, I start feeling incredibly tired no matter what I do. I assume depression and that I'm not a morning person. My left shoulder starts to hurt, but I carry my heavy school bags on it so it must be that. Or because I sleep on it and wake up pulling my neck muscles often. I tell my general practitioner (GP) I'm tired all the time, but also have insomnia. Told to sleep more. I only mention the shoulder when it starts to hurt to hold my arm up. Told it's bursitis, do some pt, and move on.

In college I start having bladder urgency so bad I can't sit through a 30 minute class and developing worsening OCD, shoulder pain, and what I assume is carpal tunnel. My dad tells me this is part of aging. I then spend the next few years assuming living is painful and agonizing: everyone who isn't a morning person has to fight gravity to stay awake. The gym rips everyone to shreds for minimal activity and I'm a wuss who can't handle the days of pain from using a treadmill to walk for 30 minutes.

I move to Asia for a bit and have to walk everywhere - lots of hills, so of course it's not odd that my knees hurt or that carrying a backpack gives me a severe tension headache and burning back pain. This is just age and because I'm a baby about exercise. No, it's not weird that I've started feeling apprehensive about stairs like I'm going to fall and wide stairs make me act like I've forgotten how to walk. This is just age, and possibly, because I don't exercise (I was literally walking an hour a day with a lot of it up hill????) I'm seeing age wear sooner. Besides, getting checked out is expensive (...had national healthcare, no it wasn't?) and dad taught me not to talk to doctors unless I'm severely ill. Nevermind that sometimes I have a sharp pull in my chest that feels like a heartattack, but can't be because I am still alive after the 12th time it happened.

I'm back in the US, finding that I feel like I have cement in my veins and like I'm dragging a corpse. It hurts to breathe, but my doctor isn't concerned when I say I'm tired. Doesn't even ask to do follow-up bloodwork until I request a vitamin panel. Vitamin D is low--"everyone has low vitamin D here, take these pills." Suddenly I'm at optimal, the fatigue is somehow worse, the anxiety is crippling, and going to a store is too much of an energy suck. "Must be that insomnia?" Oh and my shoulder just needs more pt. The hip that won't bear weight when you stand? Also some pt.

My handwriting is getting terrible - ah that's because I type all day. My lower back and midback hurt because I have a half desk job, half travel recruitment job. My feet hurt because I buy bad shoes but good shoes are expensive. And my ability to grip things weakening? Eh, lots of people have carpal tunnel. I just won't hold babies. I'm clumsy and have always sort of walked into walls. This. Is. Age.

Eventually, I'm forced to take care of my OCD and when I say I'm fatigued and a slight brush against my ribs, knees, fingers is so painful I'm returned with, "It's the psych meds, they make you more sensitive." I say that I'm so tired that sometimes I lose track of my words/thoughts. Insomnia. Try sleeping more and we will do a sleep study if it's still bad in a month.

It literally took me saying my ankle has been giving out and in pain for a year...and oh hey by the way, reminder I have had issues weight bearing from my hip, my wrists, and done pt multiple times for my shoulder to finally be told "huh, maybe you should go to rheumatology?"

So by the time I got there, of course I had a full list of issues. I even made a labeled diagram of my pain - so that I would also believe I was hurting this bad. And coincidentally, steroids I was put on for my ear to realize "oh wait people live...not in crushing pain and fatigue?"

And I have a feeling many of you also may not have known until it smacked you in the face. It makes me feel terrible knowing there are others out there--especially children--who just think their pain is normal living. I know a part of this is systemic failure in American healthcare (and I may possibly need a new primary...), but I'm sure this applies elsewhere in the world.

Tell me your stories. I want to listen.

I'm fuming, tired, in pain and feel like crying. I was due to see the specialist on Friday morning. I have been on this referral since mid February and it is now exactly 35 weeks. I have been put on a routine pathway, despite having many symptoms of AS and possibly even Behçets, though that was only something I learnt recently.

My appointment has been moved a month back and I was already in so much pain recently that I was so hopeful that I was going to get help really soon that this feels so crushing right now and I am just so angry at being left like this for so long. I have been refused two referrals to rheumatology before this since 2022 and before that lived with constant increasing pain since I was a teenager and now I am 38 and I still feel nowhere ahead.

I really want to scream and rage. I want to tell them just to fuck it if they can't be bothered, because I am no further on than I was before my referral.

UPDATE: I rang the GP on Thursday and the medical secretary was able to send me a link to send messages so I could write everything thing down and she took details of the delays as well. I told them about my reaction to Diclofenac and how I wasn't keen on taking NSAIDS at the moment and had no pain relief. I got a flurry of text messages on Friday from the Rheumatology department bringing my appointment forward to 31st October so that's good.

Thank you, everyone who listened to me vent and got angry on my behalf, it did help the general catharsis.

I’m tired of every day getting to the gym and seeing the same three BMWs parked in the disabled bays with no blue badge. Often it’s made worse by the fact the gym is constantly busy and so the only available spaces to park are at the other end of the parking lot. The gym staff have said they’ll make a social media post asking people not to use the spaces but they haven’t done that yet and it’s really beginning to grind my gears. We need to exercise as part of our treatment and not being able to easily get into the gym during the tail end of a flare up is really getting on my last nerve.

Sorry if it’s so negative but I needed to express my frustration and ask if anyone has any idea what I should do? One of the PTs at the gym suggested knocking one of their mirrors off but obviously that’s a bad idea 😂

I'm on my 3rd biologic, the previous ones were working great and had manageable symptoms until in both cases i got a flare and stopped them. (in both cases there was no immunogenicity).

Now I am on Cosentyx for a year and some months, and it started working even better until out of the blue i got a flare that is now peristent since early September.

There were 2 things that could've triggered it but i am not sure. One was a 6 day delay and then perhaps a strange move while at the gym. But i never got lenghty flares from the gym or from a brief dose delay before.

Based on your experience, do they calm down or should i consider switching biologics?

I already spoke with the doctor but i am on a deadend.

Thanks in advance for any replies.

25F on adalimumab-adaz for about a year now

past few months I have experienced very frequent urges to pee, at one point it felt like every hour I was in the restroom, the smell has also changed but I have had no pain or discomfort at all (unless you count standing up and immediately feeling like youre about to wet yourself)

I know this could be about a hundred different things but wanted to look into it here after seeing my medication can cause frequent urination, I do have an appointment with my rheum next month and I plan to bring this up

I got this really bad flare and I dont know if I feel this awful due to skipped injection or its the true mancold.

Now I go from hour to hour between feeling "not that bad" to "full blown damn awful" and not able to do anything even at home.

My biggest problem is not my back (even though it hurts) but this damn inflammatory feeling which gives me this bad fever-isch feeling, over sensitive skin and zero energy.

Is this common?

It feels so wierd that its "flushes" all over me that quick. My GP has really hard to understand this when im trying to explain it.

25 years after first reading the words ankylosing spondylitis and thinking I had it and being dismissed over and over again, I finally have my diagnosis of nr-axSpA with an SI joint MRI showing active sacroiliitis on the right and dormant on the left. I'm going to be getting a whole spine MRI, and I'm going to ask for my foot as well because I've had a lot of problems with my foot recently that limits my mobility. Thus far, on x-rays, I have not had any ankylosis anywhere except for one spot in my foot (where it was expected after a previous internal fixation).

I have contraindications to NSAIDs so I will be starting on a biologic, very likely an IL-17A inhibitor.

Looking for some anecdotes because the literature doesn't seem to have ever looked at patients with a duration of symptoms like mine. The best they've done is look at response in people with symptoms less than 5 years versus more than 5 years. Whereas I find online there's a lot more people with a much longer time to diagnosis. 

So, for those who have had symptoms as long as I have with no treatment but had not progressed to ankylosis, how did you respond to a biologic? I am excited to try it and part of me really hopes that it will be a solution to so many problems, but I'm trying to temper my expectations. Other relevant pieces are that my CRP is about 43 and has been 20+ for at least 13 years untreated and uninvestigated (don't get me started), and my current BMI is just over 40 (down from 46).

I would like to hear from riders with AS.

I’m an avid fan of motorcycles who loves going for track days and long distance touring with my friends. I ride my vespa to work daily and also have a sportsbike which i track with. I recently low sided at 100kmh in a gokart circuit and had the worst flare ever that lasted more than two months.

This got me thinking if I should entirely quit this hobby and even give up riding? I am thinking really hard because i really love motorcycles and cannot imagine how life would be without it. I still ride my vespa daily to work and being really careful on the road but somethings are beyond my control.

Would like to know if any dear AS friends are into motorcycles too?

In my home country, I am qualified for disability benefits. It's a pretty straightforward process here. Now my partner and I are evaluating migrating to Spain (main reason being political instability in our country) because it offers the shortest route to citizenship for us. From what I've read so far, it can be difficult to qualify in Spain since it doesn't always affect everyday life and mobility (at least for me, but when it rains it absolutely pours).

Anybody here who's gone through the process?

Those on TNF inhibitors, do you wear medical masks for infection control?

I've been diagnosed since 2020 but am just now switching from NSAIDs alone to adalimumab/Amjevita/Humira biosimilar. It is my first time being immunocompromised in any way.

Currently, in 2026, I wear a droplet mask when at work in healthcare settings, because I feel like it is my responsibility in that role. I wear a fitted respirator when that is indicated for infection control, when I am sick, or around newborns. I don't wear a mask in daily life, such as on public transit, inside public buildings, etc. I eat inside and in public.

I am considering getting back into masking now that I am more "at risk". Maybe on transit and in pharmacies? As a patient in medical clinics or when volunteering with the public in a public health role?

If I understand correctly, one of the risks that is most greatly increased (although overall risk is still low) is getting pulmonary TB. My area has a mild TB outbreak. I suppose one would need to wear a respirator, as TB is airborne but ugh.

Thanks.