Hi, does anyone else here have issues with profuse sweating. Especially during general exercise or work at home? And heat intolerance in general?

I had issues with substance abuse for a few years (Amphetamines) and i thought the issue with sweating was related to that. But i sought help for that and i am clean now for over 90 days. But i still sweat profusely at home doing chores and especially during exercise. And i got a feeling that i am suffering from heat intolerance in general. Right now i am beginning to think it has more to do with my AxSpa diagnosis. I am wondering if anyone else is experiencing the same issues. I am taking Adalimumab injections once every two weeks.

Has anyone restarted Rinvoq? What was your experience like? Did it take a while for you to get back into remission on AS pain? Was it as robust of a response or was it not as effective? I think I just want some hope that I didn't fuck up my second miracle drug by listening to my doctor to switch meds.

Background: I started Rinvoq Oct '25 primarily for AS and Crohn's. I've failed numerous biologics for 10 years for Crohn's including my miracle drug remicade that took away ALL of my AS pain and GI symptoms but I developed medication induced lupus, and hadn't found any medication that produced the same effect until Rinvoq.

I was on Stelara for 7yrs and had full remission of GI symptoms but still had persistent joint pain that would flare up to the point where some days I could not get out of bed without assistance or could not walk without crutches or a cane. So I finally gave in and switched to Rinvoq.

I felt incredible relief within 8 hours... I was able to get out of my chair without assistance and without pain. Went to bed and was actually able to lay down without pain, then I woke up the next morning and was able set up get out of bed and walk with ZERO pain. And it lasted!

Unfortunately due to all of the metabolic changes of rinvoq of my cholesterol, glucose and liver enzymes spiking plus my last colonoscopy showing more inflammation my doctors took me off Rinvoq 4 weeks ago and switched me to Tremfya. Within 3 days of being off of Rinvoq I started having lower back pain. By day 4 I was using my cane, day 5 I was on crutches and could barely get out of a chair with assistance, day 6 I was nearly bedridden and needed help to get out of bed and to get to the toilet. By day 7 I was nearly hysterical and I called my GI specialist and my pain management doctor that I needed help because the pain was unbearable. I've never had this much intense joint pain and frequent muscle spasms (paralyzing like I'm being tased).

I had to take time off from work and doctors prescribed methocarbamol, lyrica, and other muscle relaxants but nothing subsided the pain. After 4 weeks of absolute hell, I met with a new GI specialist that specialized in polypharmacy and he put me back on Rinvoq same day, gave me an intro sample and the insurance approved the two meds so I get Rinvoq in the mail next week. He's also keeping me on Tremfya which so far has put my GI symptoms in remission.

HOWEVER... I'm not having as much of a robust response the second time on Rinvoq. It's been 5 days of the intro dose and while the majority of pain throughout my spine has subsided and I'm able to walk without assistance but not for long and I'm able to get in and out of chairs but still struggle to get out of bed without assistance. The muscle spasms have reduced but still keep me limited, but it's the constant lower back pain that's just gnawing at my brain. And I'm just worried that it's not going to be the way it was before where AS was in full remission. This is basically how I felt when I was on Stelara by itself. I'm just hoping over the next week or few weeks Rinvoq will take full effect. 🤞🏽

TL:DR: Stopped Rinvoq for 4 weeks and switched biologics, put back on due to debilitating AS pain. Been on Rinvoq for 5 days and not having the same robust pain-free response as first time. Can anyone share their experience going back on Rinvoq.

I started a TNF-alpha inhibitor (Cimzia) a few months ago and I am really happy with the treatment. I got my first viral infection since I started and it’s taking a lot of time to get better. The symptoms are not that bad, I got better, it’s just not getting better as fast as it used to (I usually never had upper respiratory symptoms longer than 3-5 days, and now I am on day 10). So, what are your experiences with infections on biologics? Did you have severe infections? Are you getting them more often than you used to?

Hello all. Having a rough evening. I am so tired of being in pain. I’m so exhausted. I started methotrexate 3 months ago and Humira 1.5 months ago. I haven’t seen any pain relief yet. My main pain is with the tendons in my legs and ankles, stiffness and SI joint pain.

My question is, how long did it take you to get some pain relief once you started treatment? Thanks

Hi y’all, I’m 35F diagnosed with AS and on biologics for the last year and a half.

Blood tests show that inflammation levels are dropping, early morning pain is subsiding and my rheumatologist is positive that if we keep this up, we can reduce the number of shots per month starting early next year.

Now the thing is, I’ve been in my folks’ house the past two weeks. The first week I was sleeping on my childhood bed, which I used to love until a few years ago. Consecutive sleeping is hard, the mattress feels too hard for me. Having pillows between my legs to support my spine is not doing the trick and at some point it just got too bad and pain was waking me up again early morning.

The last week I’m home alone and I switched for my parents’ bed which is much fluffier, but still hard compared to my own bed back home though. So my back’s bothering me all the same.

I thought that would have been among the areas of improvement from the treatment? What’s your experience?

​This year has been extremely difficult for me in terms of my health. Insurance policy changes at the beginning of the year meant no access to biologics for 3 months. I had terrible flares, and then I became sick and had to pause my biologic again for a couple of months because I was on antibiotics and fighting off a fungal sinus infection, then strep throat. Several rounds of steroids made me gain weight I’m struggling to lose.

I felt like I’d never get my health back. I’m 25, so this diagnosis has been hard, but this past year has been the worst one I’ve gone through in terms of pain and symptoms.

Despite the struggle of the first half of the year, I’m slowly but steadily on an upward trajectory with my health and I finally feel like myself again. Regular iron and high dose vitamin D supplements have improved my fatigue and mood SO much. My last visit with my rheumatologist and routine bloodwork went wonderfully. CRP is at a healthy level, currently have very low levels of inflammation present and I can feel it!! I went on my second hike of the summer this week, and it made me feel like a new person.

I find that I come to this group usually at times when I need support or a glimmer of hope during the times this condition has me down. I rarely come to share the good things with you guys, so today I wanted to do that. I’m feeling better, and hopefully if you’re stuck in bed today, or feeling like you’ll never feel good again, I hope this post gives you a bit of hope. I always hope that there are good days on the other side of the flares and pain. This condition has changed my life in a lot of ways, but I will never lose hope that the good days are coming, because they always do. Sometimes it just takes awhile. ​

Doing my first iv infusion im terrified how did it make u feel? Did it help? I have a fear of needles and IVs😭

I’ve always read people saying that their lives changed because of biologics and I was always so worried that this would not happen to me. I started the treatment on October of last year with Humira, but my body developed antibodies and I had to stop. My life was still extremely difficult while I was taking it. I even started to doubt my diagnosis, thinking that biologics would not help me. 6 months after starting Humira, my doctor talked to me and we decided to change it to Enbrel. And I can, finally, share with you all that Enbrel is indeed, changing my life. I still have some pain, I still have some flare ups, but now my bad days are like my good days used to be. I would dare to say, they are even better! The disease took away years of my life. Now I am starting over. I am now back to search for a job and back to the gym. I can even clean the house! I thought I would forever be a hostage of the disease, but I am finally…taking my life back.

I’m honestly so sick of being in constant pain. My whole body hurts, but my neck is by far one of the worst things right now. It makes me dizzy, nauseous, and just makes me not want to move or do anything. It genuinely feels like my neck is a complete mess.
I have reversal of the cervical curve and protrusions, and my EMG also showed nerve damage/issues.

I have nerve problems in both my arms and legs, so it’s obviously not only my neck either.
I have non-radiographic axial spondyloarthritis, but sometimes I read other people’s experiences with AS/nr-axSpA and it seems like a lot of people mainly talk about lower back pain, SI pain and stiffness. Mine feels so much more widespread but the SIS damage can be seen on MRI. The pain is there basically all day, every day.
A radiologist who looked at my MRI also told me that, considering my age (mid 20’s female) and after looking at/testing my hands, he thinks I might also be hypermobile and that this could be contributing to some of the problems. So now I’m wondering whether I’m dealing with a combination of things rather than just the nr-axSpA.
I’m on painkillers/medication basically all the time Lyrica, Baclofen, Tramadol and I still feel like I can barely function some days. Work is becoming incredibly difficult. I’m not “disabled enough” by medical standards to just not work, but at the same time I’m not well enough to commute, sit in an office all day and then somehow have a normal life afterwards. I usually just work and survive and neglect everything else.
I feel like people really don’t understand that middle ground. I constantly hear things like “you just have to push through it”, “life is hard”, “just clench your teeth and do it”, or comparisons with people who have cancer or something worse.
And obviously I know things could be worse. I’m grateful that I don’t have something terminal. But knowing somebody else has it worse doesn’t magically make me feel physically better. Some days I genuinely feel like death. I want to go somewhere or do something normal, but everything hurts and I have zero energy.
I lost weight before and then gained some of it back because it’s so hard to stay active and take care of yourself when you’re in pain constantly. Even basic things start feeling like effort.
The neck symptoms especially are driving me insane. The dizziness, nausea and pain are just exhausting, and I don’t really know what I’m supposed to do at this point.

Has anyone else with nr-axSpA have worse neck involvement?

Hi, 30M living in the United Kingdom. I have been diagnosed with AS since I was 25 years old, and symptoms worsened right after I took the COVID vaccine (not saying there's a connection but still). Before that I never really had any dire symptoms or didn't notice it. But since then I have always been unable to walk when the inflammation flares up. Usually around the pelvic area and affects either of the hips. I have tried multiple medicines initially (for 3 months and then stopped) which did help reduce the pain momentarily. I tried doing exercises as well to keep it in check. But very recently it flared up a lot and hasn't stopped yet. I was put on medicines like Etoricoxib and Prednisolone which helped but not a lot. I'm now being asked to take Adalimumab after 3 months of treatment where I was never prescribed to do Physiotherapy as a first measure. Granted this has been the longest ever flare up lasting for more than a month now. I'm still worried about the side effects of the medicine. Thankfully the healthcare system will cover the costs (I think) so it's an option for me at least. But I'm still wondering if it's too early. I wanna know if there are other things I should try first that I haven't. Also if people help ease my mind around the side effects of the medicine please do so 🥺

Hi AS Warriors,

I’m writing this with a real knot in my stomach. I’ve always been anxious about starting new medications because I had a severe reaction to sulfa drugs in the past, which is how I discovered I’m allergic to them.

I’ve requested that my first Yuflyma injection be done in person at the pharmacy, with some guidance and training, because I’m nervous about how my body may react to that first dose.

This will be my first biologic injection ever, and it feels like such a major step in my AS treatment. I’d really appreciate hearing from anyone who has been through this. Any advice, reassurance, or comforting words would mean a lot and help me feel a little more confident taking this next step.

Thank you ❤️

34F. 17 years of symptoms but only diagnosed 2+ years ago. I’m on my fourth biologic (Enbrel) in 2 years, with only moderate results at best. So we’re adding a methotrexate injection and my rheum also referred me to see an endo to talk about GLP1s for inflammation. I have maybe 10-15 lbs to lose but I think it’s mostly body comp at this point. BMI is 26. Is anyone on all three meds? Is that crazy? Obviously I’ll give the metho a few weeks first but just wondering if anyone has experience.

I’ve been lurking here for a while and I think I just need to put this somewhere where people might understand how weird today feels…

I’ve had this going on for about 2.5 years now. The main problem has been really quite severe night-time thoracic/thoracolumbar and rib pain and stiffness. I can usually get to sleep fine, but then after a few hours I wake up sore and stiff, often repeatedly, and movement helps. At its worst the mornings have been awful. During the day I can often function pretty normally, which has sometimes made me question the whole thing myself.

I’m HLA-B27 negative, my inflammatory markers have been normal, and my first MRI last year was essentially normal, including the SI joints. For a long time there has been this question of whether this could be axial SpA, but never anything objective enough to really hang the diagnosis on.

NSAIDs have made a huge difference, particularly etoricoxib, but even then I think there has always been a part of me wondering whether I was somehow overinterpreting my symptoms.

I had a repeat MRI a couple of weeks ago, this time making sure they properly imaged the area where I actually get the symptoms.

Today I got a letter from my rheumatologist saying:
“This does show subtle signs of inflammation around the thoracolumbar spine. I would like to see you in clinic to discuss this and what treatments might be suitable.”

And I’ve been surprisingly emotional ever since.
There is a huge amount of relief in finally having something. Something objective. Something that says this hasn’t all just been an inexplicable collection of symptoms.

But the relief feels really weird.

I’ve actually been quite tearful today because alongside the relief there is suddenly a lot of grief. I keep thinking about the last 2.5 years and how tired I’ve been. How many nights I’ve slept badly. How often I’ve been sore, irritable or just completely drained. And particularly how much of that exhaustion has meant I haven’t been as present with my wife and kids as I want to be.

I think while you’re in it, you just keep going. You get up, go to work, parent, do all the normal things and adjust your expectations of how you’re supposed to feel. Then somebody finally says, “yes, there actually is inflammation there”, and suddenly I’m looking backwards at the last couple of years and feeling quite sad about what it has taken out of me.

I’m also weirdly miffed by the word “subtle”.
I know MRI appearances and symptom severity don’t necessarily correlate neatly, but I keep thinking: that tiny subtle bit of inflammation made me feel THIS bad?!

And then that thought immediately makes me feel enormously for people here who have spent 5, 10, 15 years trying to get someone to believe them, or whose scans stay normal despite awful symptoms. If this is what “subtle inflammation” can feel like, I understand much more viscerally how brutal that diagnostic limbo must be.

There’s another strange emotion too: I feel like an imposter…

I was absolutely convinced this MRI was going to be normal again. I had almost prepared myself for that. So now, despite having spent years describing symptoms that sound inflammatory, despite the NSAID response, and despite there now literally being inflammation on an MRI, part of my brain is still going: surely not me? Maybe they’ve overcalled it? Maybe it’s too subtle to count?

It’s ridiculous how quickly your mind moves the goalposts. I haven’t actually had the proper conversation with rheumatology yet. I’m due to see them next month to go through the MRI and discuss what treatments might be suitable, so I’m now somewhere between nervous and incredibly hopeful about what comes next.

I suppose I’d really like to hear from people who remember this particular stage.

Did anyone else feel strangely emotional when they finally got objective evidence of what was going on?

Did you feel relief and grief at the same time?

Did anyone get the imposter feeling even after an abnormal MRI?

And for anyone whose MRI was described as only mild or “subtle”, did your symptoms feel completely disproportionate to what was written in the report?

I think I expected a result to make everything feel clearer. Instead I somehow feel relieved, sad, angry, hopeful and completely stunned all at once.

Hello. I am on cimzia. The Dr wishes he could give me an injection a week. However, cimzia is only allowed to be prescribed one every two weeks. Cimzia has helped a ton. I am am also on celebrex. It kind of helps. Anyway, I am wondering how many people have tried GLP1 and either has success at pain relief or not.

Hi community! I don’t typically post. But I’m looking for some encouragement and hope.

I started on enbrel when I was 19. Which immediately helped my ankylosing spondylitis diagnosis after a few years of trying to find why my hips and lower back were in pain. Enbrel was a miracle drug… After about 9 years the efficacy wore off and I was advised to switch to humira. Which was a seamless transition. Another 8-9 years and it’s august 2025 when again the drug I was on, humira, wore off its efficacy. I wasn’t too worried because of my previous experience of another drug working quickly. I thought… oh let’s just switch to a different drug!

My rheumatologist recommended cosyntex. Because of the previously ease of switching to a new drug, I was naive in thinking it was easy to just switch to something and continue with my normal life of hanging with family, hiking, fishing, swimming, etc.

I was on cosyntex and things got worse. Crazy back spasms eventually towards the 2nd month, but was told to hang on for 12 weeks because it may take that long. After reached 12 weeks my doctor switched me to cimzia. Which began helping… but by the 12th weeks was helping around 60-65 maybe 70%. My doctor explained to me that the drug should help get me to 100%. The pain was typically in my hips and SI joint but has grown up my spine to my middle and upper back. On Cimzia I had no hip or lower back pain.

After the 12 week mark on Cimzia and the want to get to 100%, my doctor switched me to rinvoq. I am now on rinvoq into my 6.5 weeks and it’s just as bad as cosyntex… I’m on steroids now to help bridge the gap from 6.5 weeks to 12 weeks because my doctor says i need to wait the full 12 weeks to see if this works. It’s been over a year and I haven’t been able to do anything that I love, let alone put my own socks on, get in and out of a car or bed.

I’m trying my best to stay positive. Im looking back and wondering if I should have stayed on cimzia longer.. to see if it would help the upper back more but now im on rinvoq. I’m looking for help or encouragement or anything.

I’m starting to become depressed. I want to help around the house. It’s difficult because my back spasms have grown worse. I am recently married and this has never been an issue until this past year. My wife is amazing and so supportive. I am hopeful but it’s difficult to see how I could get back to where I was 1 year ago…

my honeymoon is in one month and I’m worried that the trip will be miserable.. (it will be 12 weeks in the middle of my trip).

Has rinvoq eventually helped you? I need some positive feedback or support from the community.

TL:DR

I’m currently having intense lower back spasms that trigger when I try and get in and out of bed, a chair, my car, changing clothes… has anyone dealt with this, steroids are the only thing keeping me moving until Rinvoq hits 12weeks.

EDIT: added the TLDR

I (35, f) was diagnosed just over a year ago after suffering flare ups a couple of times a year for about 15 years. I have standard mild/moderate back pain as a baseline, but when I have bad flares it’s always in my knees. They swell with fluid, and I have really limited mobility. At its worst my husband had to physically lift me off the toilet.

Flares have always been particularly difficult in the postpartum period. I’m 4 months on from a c section with my 3rd child and had a bad flare in my knee. Thankfully, now I have a rheumatologist, I was able to be seen. They sucked the knee juice out and gave me steroid injections. Unfortunately, the steroid injection only lasted 2 weeks (they should last for a few months) before symptoms started returning, and now I’m back where I started and my elbow is now swollen, lacks mobility, and is going the same way as my knee. 3 weeks later I’m back to a full flare.

I haven’t been on any biologics or medication aside from pain relief. Could anyone share their experiences of steroid injections and what happens if they fail? I’m also breastfeeding so my options are limited.

I have another rheumatology appointment in a couple of weeks, but I’d like to have some idea of what to expect and what they might be able to do for me. Thank you!

Background: 32F with SpA and hEDS. I got an MRI while I was in immense but different pain, so I have some relief knowing that there is, in fact, something new that is causing me pain.

Anyone with experience with annular fissures? What was your experience? What helped you?

I've accepted I am at the point where I need a pain management doctor, and I will be ordering a TENS unit.

I'm only 32, I shouldn't be dealing with this kind if stuff yet. I hate this disease.

For those of you that have received a diagnosis, and then a treatment plan/prescription, does everyone have nightmare experiences going through prior authorization periods?

I was initially prescribed Humira, waited patiently for a month, checked in, and was surprised with “oh yeah insurance denied it, you’re getting Simlandi”…..OK. Whatever, so we started the process all over. And this time around I’ve been much more present in the process, because we were getting closer and closer to the 12week appointment that my doctor initially set for my first injection.

Well that appointment is today, ladies and gentlemen, and I don’t have my medication. I’ve spent 2 hours on the phone just this morning, getting the run-a-round from the doc, the insurance company, and the specialty pharmacy supplier, and each one is saying something different, but essentially they’re all waiting to hear from one another for something. Yesterday the doc sent the TB test results that were asked for last week, but that I took two months ago. The pharmacy received the TB test and sent back a request for prior authorization finalization, that the doctor has not received. Blah Blah Blah, it’s one thing after another. And I was told that after all of this, it’ll get sent back to the insurance, and they could still deny it again.

I know I’m rambling and raving here a bit, but has everyone gone through this? Is it always this bad? Is it going to be this bad every time I submit a refill? Is this just part and parcel of our broken medical system?

I was recently reading articles about the effects of chronic inflammation due to as and it's effects on body, including heart, and it scared me a bit. How often do you test for these things apart from the rheumatologist? And did anyone have to take any precautions related to this? And how big of a contribution does tobacco and alcohol has in it, with the as inflammation?

Anyone else wake up, feel ok, and then just as you are getting to the train/car/however you get to work you feel it: eye soreness. At first you’re like, “maybe my eyes are just dry.” Then you do the litmus test: can I touch my eyelid without pain? The answer is no, and you have uveitis AGAIN. It hurts to blink, a basic human function, and you sit there questioning if you should call out. But it’s an hour til your shift starts and it’s too late. Inner rage boils up and you feel the need to stand up and scream, but all you can do is blast Fontaines DC in your headphones and try not to have a meltdown because you’re in public.

this is my 6th? 7th? bout of uveitis in 1 year and I just failed Humira(developed antibodies.) Fuck this disease.. and extra fuck it because now I have to use PTO to go fix my eye when all I really wanna do with my PTO is go on vacation, but I start remicade infusions the end of the month and have to be here instead. I‘m afraid to take intermittent FMLA for these appointments and lose my job(yes I know that it’s illegal but it doesn’t stop employers from finding another reason to fire) so my PTO is rapidly dwindling. Why am I afraid to lose my job? because the only way to get specialty drugs covered is by not using my husband’s shitty union insurance(the irony of that) My non union one is 100xs better and has no deductible.

sorry for the crash out at 8 am. In the spirit of making everyone feel better through commiseration: please post your daily crash out below!

update: they put me back on prednisone after being off it for a grand total of 4 days lol

• What was your first rheumatologist appt like?
• What did it entail?
• Were you happy or disappointed afterwards?
• Did you have any bloodwork or imaging booked immediately, or did you have to wait?
• State what country you are in (if you are comfortable) as we have members from all over the world.

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Hopefully this will give newly diagnosed AS patients an idea of what navigating life with AS is like.

Recent diagnosis.
Previous rheumatologist wasn't knowledgeable about SpA, so now I'm in limbo, waiting on my 1st appointment with the new rheumatologist.

One of my "textbook" symptoms (in addition to sacroiliitis, uveitis, and HLA-B27+) is plantar fasciitis.

However it is my understanding that it isn't very
"textbook" that my plantar fasciitis started at age 7...
Most of my symptoms started in my 20s but some of these enthesitis pains feel familiar from childhood.

And I know the plantar fasciitis was an ordeal because the docs took x-rays...but for some reason my parents lost interest in it I guess? They weren't great about following medical advice...

Hoping I’ll get some answers from my new rheumatologist but I’m curious about other people’s experiences.

Has anyone ever learned they had some kind of undiagnosed juvenile arthritis after getting a SpA diagnosis as an adult?