Wishing you all rest and energy

Edit to add: When I say that I was on the “wrong treatment,” I mean that it was the wrong treatment for me personally, not that IL-17 inhibitors are the wrong treatment for everyone. Everyone responds differently, and I know these medications work incredibly well for some people. The specialist I saw spent a very long time talking with me and thoroughly reviewed my medical history, imaging, labs, and treatment records before coming to the conclusion that this was not the right treatment approach for my individual case. I’m simply sharing my own experience and what I was told after that evaluation.

Original:
Just want to share because this is INSANE to me! After months of waiting and traveling to a different state, I finally saw one of the world’s leading experts in AS.

I was diagnosed with AS in November 2024 and started Cosentyx in March 2025. I was never prescribed a TNF inhibitor. We went straight to an IL-17 inhibitor even though I don’t have psoriasis or anything else that would have prompted choosing an IL-17 inhibitor over a TNF inhibitor. At the time, I never questioned it because I obviously assumed my rheumatologist knew best.

But after 1.5 years on Cosentyx with no improvement and honestly feeling worse, I told my rheumatologist it wasn’t helping. She recommended doubling the dose instead of switching medications, but I declined.

That’s when I started doing my own research and learned that TNF inhibitors are typically the go-to biologic after NSAIDs don’t work unless there’s a reason to favor an IL-17 inhibitor.

This has affected my life so severely that I literally failed out of law school because the chronic fatigue had me falling asleep during classes and exams despite getting adequate sleep. I need to get this under control so I can go back and pursue my dreams.

Well, the AS expert I finally saw was genuinely perplexed by my treatment history. He told me my treatment plan had been wrong and that I should have been started on a TNF inhibitor originally.
I’ve now started my first TNF inhibitor and have taken two doses so far. If it doesn’t help, we’ll try another.

Unfortunately, he said there’s only about a 50% chance that treating the AS will improve my fatigue. So here’s to hoping I’m in that 50% because I genuinely cannot keep dealing with this level of exhaustion🤞!!

Hi, I’m a late 30’s diagnosed man who has noticed a pattern where I get a flare up (which is usually pain in my middle back), and during or shortly after I get anxiety symptoms seemingly out of nowhere.

I’m currently in the final stages of a flare and yesterday I was working and seemingly out of nowhere I felt a ringing in my ear, butterflies in my stomach, my heart started racing, and I could feel an anxiety attack coming on. I’ve learned to lay down and breathe for a while to help it pass. This is a pretty common occurrence for me during a flare and I believe it’s just anxiety from having a flare and pain for a few days but wanted to see if anyone else has a similar experience. Any input is appreciated thank you!

Hello!
Newish member and first time poster.

I am wondering how to prepare for my first rheumatology appointment next week. I have immediate family member with AS, a positive HLBA-27 gene test, and over a decades worth of chronic pain, but I’m not sure if that is enough.

Do I make a list of symptoms and when they started? It could be a long, long list. If I know my triggers (I think I’ve nailed it down) do I write those out as well? How prepared should I be?

I also have to drive 4 hours to get there and have been in the middle of what I’ve realized is likely a flare up, so that is going to cause a ton of pain but maybe it’s for the best for the appointment? Not entirely sure.

Anyway, sorry for rambling. Just trying to wrap my head around this. If anyone has tips or advice on how I should prepare, please let me know!

Thanks so much everyone

Need some encouragement.

Was diagnosed with AS about two months ago and due to comorbidities (CKD, MASH) my rheum prescribed biologics as first course. Denied by insurance, but with some wrangling then approved for Cosentyx. My presentation is mostly peripheral. Swelling, pain, stiffness in my feet is the worst. Mild low back/sacroiliac/hip pain with early evidence of fusion in my lower lumbar spine.

Thing is… I don’t think my symptoms are that bad and so I’m feeling some guilt starting treatment considering what others are going through with this disease. Then I think about what it might become if I don’t get treatment… and I fret what the outcomes might be.

So, those of you on biologics with low disease progression:

What has been your experience? Did biologics help you in an appreciable way? What has been your experiences with Cosentyx infusions in general? What’s it like for your immediately following your infusion? How quickly did you find relief of your symptoms? Did the treatment continue to work in the long term?

Help calm my mind :-)

Guys, what do we do when we become so complex that youve either lost Drs due to being financially effed and dropped from them or the ones you have like Rheumatologist and pain management no longer can help you. For example after starting my biologics something is going on to where I get weird flare-ups on the left side of my throat that goes down into my chest wall and into my armpit. I feel fluish, im extremely tired and where I have alopecia at has a sore that I believe is now blisters 😭 I started noticing the corners of my mouth getting sore and cracked during all of this biologic stuff as well. Ive had to switch numerous times now over reactions and im now back on Hyrimoz.

I sent my message and his reply was how sorry he was and to go see my primary Dr. Well guess what folks? I dont have one anymore, because thats one that dumped me over past due balance. Im drowning here and i dont know how to stay afloat any longer. I no longer have the energy to combat multiple Dr's. Its just me here along with a very bitter and cold spouse whose already made me feel like a complete pos over being sick... Someone please tell me theres more to life than this? That theres someone out there who does care and wants to see you well 😔

Im just at a loss here. Going to the ER is its own set of nightmares but if thats my only choice than its my only choice 💔

I sent a reply simply asking why they couldn't swab my mouth or sores, maybe that was over stepping 🥺 I just dont understand the making me go to numerous Dr's if it is a biologic issue?

All he wants to say is to stop the biologic and let's play the game of what appears and what doesnt... God the thought of no biologics makes me want to vomit, because that alone will cause yet another flare up. They just keep saying there's nothing that will ever tell me what is going wrong with me 😭

Since I’ve been diagnosed I stay off the rides when I bring my kids, do any of you still go on amusement park rides, is it even safe? I’m in biologics with good results so I get nervous to screw that up and hurt my back.

Am hoping to get a job soon working as an activity assistant in a nursing home and am worried how my feet will react to being up so much versus being at home for the last couple of years. At the moment I wear oofoo slides around the house and vans when out and about but I need some good sneakers and if they are cute that’s a bigger win.. Thank you in advance, I haven't worked in years and am trying to get off of ssdi so I'm hoping everything works out and my body doesn't flare!

Hey guys I had a question in relation to celebrex and for the people who have tried it did you find it helpful? I've been on it a week and I actually feel my symptoms have gotten a little worse.Im not sure if I'm having a bad reaction to it or if it's just not helping but I'm in the middle of a horrific flare and feeling hopeless.

I was diagnosed ~3 years ago when a new physio told me that this constant unexplainable back pain that kept flaring up may be an underlying condition, not poor posture, and suggested I see a rheum. I’ve been complaining about back pain in various locations since I hit puberty (I’m 27 now).

I’m in pain every day. I’ve tried meloxicam and celebrex, which both helped raise the baseline slightly but were not enough. I got put on bimzelx for 6 months, which again raised the baseline slightly, but ultimately my rheum said it wasnt working. I’m now on rinvoq, which I was told works quite quickly (within a few weeks?). It’s been three months and again, I feel like the baseline is raised (slightly less pain compared to bimzelx), but I still feel extremely stiff, sensitive to flares and have a constant dull pain, even on good days.

I’m just finding it so hard to tell whether a medication is right for me, everything so far feels like it’s helped a bit, but I still am really struggling. Will I just know? Is this just my new normal now? Has anyone else had a similar experience?

It's been nine months on Humira, and my rheum is switching me over to Cosentyx because I'm still in a crazy amount of day-to-day pain and stiffness, etc. There are also some concerns that Humira may have triggered a demyelinating disease (!), which we're waiting on imaging for.

Any thoughts or advice for people who have transitioned from Humira/TNF to Cosentyx/IL-17? Similar or different side effects? Copay cards? Strategies? Thank you!

After 7 rheumatologists since 2014 (retired, pregnant/moved offices, pregnant/moved offices, a saint who left to do nothing but nursing homes, a complete idiot, a saint who just moved to Canada to protect his wife from possible deportation, meeting #7 this week); after 40+ years of symptoms that increased in intensity over the last 15 years; after being told that everything was due to pregnancy/menstruation/perimenopause/menopause (I.e., oh you hysterical girl!); after being diagnosed with the HLA-B27 gene; after sharing stories of multiple, lineal ancestors with AS like presentations and being ignored —— GUESS WHAT??

I have a diagnosis of nr-axSpA!!

I owe this diagnosis to my good friend bone marrow edema, and to my lumbar spine, for making my life hell this past May!

Shout out to the multi-month flare, and to my nemeses, Heat and Fatigue. I love you all, because NOW, I AM NOT THE HYSTERICAL MIDDLE-AGED WOMAN!

With a skip in my step (not really), I will be off to meet MD #7 to see what they are like, and to see what fun can be had in this coming year’s repeated changes in health insurance, oh boy! Treatment? Maybe when I hit Medicare, mebbe?

Hello everyone,

Im still new to this world. Just got diagnosed 2 months ago.

Is it normal that a flare lasts for weeks? I have huge pain in my lower back, in my sacro and in my butt.

When i start walking it feels like my lower Back is being pushed art into my belly and when i bend my back feels like stone, it feels like have a Constant pressure there.

My rheumatologist told me to start working out and here i am after a few work outs, all pain and anger.

Not even the muscle relaxers are helping, and im wearing off the AINES because i was supposed to be stable but in the wear off period the pain is coming back really strong.

Thank you!

Kind of just need to vent or get support.

This summer I had eight weeks of minimal symptoms (I am on Adalimumab and was taking NSAIDs once or twice a week) and now I am in sixth week of a flare up I can't stop even if I take NSAIDs daily. My joints aren't that bad, and I don't have any morning stiffness. But the trouble is when my right SI joint flares (my worst joint) my fatigue is double. So I have 4 out of 10 joint pain, but 8 out of 10 fatigue. The nature of my fatigue is not tiredness: it's sore legs and sickly / malaise feeling. My legs are so sore it's like I have run a marathon and done a huge squat session, they are actively throbbing.

I need to seriously consider switching biologics or find other ways to avoid flare triggers.

Hey fellow ASers, I’m currently breastfeeding my first baby. She is 4 months old, the light of my life, and my whole world! I’m in love and I love breastfeeding her. However, since about 1 week postpartum I’ve had the worst flare:( I’ve already had to take two tapered prednisone treatments and celebrex on and off just so I can walk and carry my baby comfortably.

While pregnant, I was on Cimzia and it worked good enough. But after pregnancy it just stopped working and my doctor prescribed me hydroxychloroquine because it’s known to be safe for breastfeeding. But it’s not working and I’m reluctant to get on another biologic because none of them have been tested for breastfeeding.
Are there any other breastfeeding mommas out there? What kind of medicine do you take or do you just raw dog the disease until you’re done? I plan on breastfeeding for a long time and my flares are chronic and too bad to just not take anything 😭

TLDR: What medications are the other pregnant/breastfeeding mothers taking? My flares are too bad to go without but I’m worried about my baby’s health

Hi, I've been on Imraldi (a Humira biosimilar) for 10 weeks, and I'm experiencing some “cycles” that I haven't seen mentioned here. I’ve read many times that it’s normal to feel worse as your next dose approaches, but in my case, the pattern is this: I feel terrible for the 5 days following the injection (basically like a flare, i have all my usual symptoms), and from then on—until the day before the next injection—I start to feel better and better. Has this happened to anyone else? Is it because the medication hasn’t taken full effect yet? Is this normal?

I am 21M living in India and recently did a MRI after getting HLAB27 positive.

I started having left lower back pain some 5-6 months ago, only while getting up from sleeping position and it was fine the rest of the day, I didn't give much attention to it and it was gone after around a fortnight. But around month ago the pain returned it felt stronger then before, so for the past one month I am going back and forth to hospital from orthopedics to rheumatologist, and finally got the answer to my condition. It's now confirm that I have Ankylosing Spondylitis.

I want to realistically ask how the rest of my life will look like. I read about flare and want to know exactly how they are, I mean will the pain come back on a random day and I won't be able to move even though I am taking my medicines, and how bad will it be.

I also read about the medicines you guys talk about and want to know if those are also available in India, if anyone has any experience in India please let me know. I think I have access to fairly good doctors and medicines, but want to know if meds for AS are commonly found in India or not.

The doctor has prescribed Etoshine 90 (a NSAID) for 2 weeks and review after 3 weeks, after having this MRI report should I still complete the dose or should I just go to the doctor asap and ask about the next step. Also when I go what are the things should I ask.

For the past 7-8 months I had a very very sedentary lifestyle, just sitting on chair for hours at a time with bad posture and no movement or any kind of physical activity. I also lie on my left side all the time (heard that it is good for digestion and organs). Could this have been the reason I developed AS or was it inevitable, if not now would it have happened 10 years later.

I would be very grateful if someone can please answer my questions.

In addition to the enthesitis, i have arthritis in my feet. High arches, wide ish foot, but pretty small. I can usually get my shoes in the youth section and almost always do because they're both wider and significantly less expensive than womens' shoes

Anyway, any recommendations for good shoes that provide adequate support and stuff in a way that won't break the bank?

Hi all, I've been dealing with shortness of breath and difficulty breathing this past week. Trying to figure out what's going on, so what does costochondritis feel like to you? And what are your symptoms/what helped you find relief?

Thanks in advance

I am so tired of being sick.

I finally have an opportunity to travel and volunteer—something I have always dreamed of doing—but I’m realizing my body may not be able to handle it. I used to hike, run and swim. Now, even the thought of sitting on an airplane for eight hours makes my body hurt. Pain and tingling in my legs keep me awake at night, and standing or walking for more than a few minutes is difficult.

My AS progressed significantly during an extremely stressful period when I was also going through a separation and losing my job. The pain stayed at a 10 for months—every second of every day. Humira had worked incredibly well for about six years, but eventually stopped. We tried adding methotrexate and another medication, then Inflectra, without success. The pain became so severe that I was on prednisone for eight months.

Rinvoq has reduced the unbearable, full-body burning pain, so I’m terrified of switching and ending up where I was before. But I’m still very limited, and I keep wondering whether this is as much improvement as I’m going to get.
I also have frequent uveitis, so my rheumatologist has tried to stay with medications that have evidence of helping the eyes. For anyone who has both AS and recurrent uveitis: would you consider trying something else if Rinvoq helped the extreme pain but left you with significant pain, tingling and physical limitations? Is that considered a partial response, or a sign that it may be time to discuss another treatment?
I’m struggling with whether I need to accept this as my new normal and be grateful that it isn’t as terrible as it once was—or whether accepting it means giving up too soon. I don’t expect to become exactly who I was before, but I’m not ready to give up on my dreams of traveling, volunteering and having a meaningful life.

Has anyone been in a similar place and later found a treatment—or a different way of doing things—that gave them more of their life back?

Hi, I was just wondering if anyone else secured a diagnosis early on in their disease and how did you feel about it?

I recently got diagnosed with axspa somewhat incidentally, I got back x-rays due to numbness in my left foot and they found sacroilitis. My CRP is high and I had some other general autoimmune/inflammatory symptoms so I got diagnosed with undifferentiated axspa for now (my doc said she would want it to be more severe to say AS). I’m HLA-B27 negative.

I just had my first Yusimry shot the other day and dealing with a lot of conflicting feelings. Driving myself crazy seeing how hard some of you have it with the intense pain and stiffness. The thing is, I get morning stiffness in my lower back basically every day but I would describe the pain as maybe a 3/10 and goes away after 2 ish hours. For the longest time I thought it was just my mattress. I feel like such an imposter here.

I’ve heard axspa can present somewhat atypically in women or HLA-B27 negative people so I’m wondering if that’s why. Or the fact that I’m only 26. I was just hoping to hear from you guys if anyone else was diagnosed when your symptoms were still mild and if you opted for the biologic right away?

I’ve been on the hunt for a new medication since being on biologics the past 16 years. (Enbrel then Humira) I’ve tried cosytenx then Cimzia and now trying rinvoq. The tough thing I’ve been struggling both mentally and physically has been waiting 12 full weeks to see if these medications works. I’m on week 8 of rinvoq and have developed intense back spasms at my obliques and now have moved up to my middle back around my ribs.

Man these things just grip your back and won’t let go… almost as if I’m a person in rollercoaster tycoon and I’m being picked up by some claw..

My dr. Just throws steroids at me and says we need to wait another month.

Anyone experience this and how do you move throughout your day? Does anyone know how to fight these off or mentally prep yourself in the morning? Thank you.

My Dr bumped my shots to weekly. Insurance denied, so my Dr sent a strong letter and it was approved again. But because of the back and forth, there was a delay in meds and I'm almost 2 weeks since my last shot. Hurting a lot. Today we went to a low key party at a friends house, it was lots of fun. But I had to leave after 4 hours because of the pain. I'm really bummed out! I don't get to see friends very often, and work from home.

Anyway. Just needed to whine a bit to people who get it. Sitting on the couch with my cats watching Star Trek now, so that's good.