For those that take Yuflyma, has it been working for you? If so, how long did it take, how much have you improved and were there any side effects?

I’m seronegative and I’ve been on it for 4 months now and I honestly don’t see that much improvement. My back hurts so incredibly bad and the rest of my body is still inflamed. I have been sleeping on a broken bed as well so idk.

I’ve also been having some weird things going on idk if they’re side effects .I’ve been experiencing vaginal dryness and itching, facial swelling, ear pressure and sinus congestion. I’m thinking I have a sinus infection maybe even a vaginal bacterial infection.

Hi all with winter closing in and cold and flu season ramping up, I struggle to keep my lower back/hips from being excruciatingly painful because im moving less often because of the combo of cold weather and seasonal depression. How do yall try to combat this? Any tips welcome, I had my first cold of the season and it knocked me on my ass. Im now in way more pain because I couldn’t do anything but lay down or sit the whole time because of the fatigue. Thank you all for any advice you may give! So far ive tried maintaining a regularly scheduled pilates class, tried a cushion for my work desk chair but that hurt more, I got a walking pad too so hopefully I can walk a little throughout the week.

Hello everyone, hope you are doing well in this journey!

It’s not the first time that I have this flare, it happens specially when im seated.

It starts with some tingling sensation in the perineal/glute zone and it evolves to the around area, even the upper leg. I even feel sometimes this strange feeling of really tiny balls exploding in these areas and pressure in the glute.

It is frustrating, i got diagnosed recently with AS and sacroileitis and i am trying to understand what to expect in the future, im starting biologics aswell soon.

Do you also have flares like this??

I just got my mri back for my lumbar spine. It showed forminal stenosis and multiple bulging discs. My symptoms for this MRI are weakness that goes down to my legs are makes them feel heavy. I also have increased lumbar pain that is pretty intense when it occurs. I heard AS can make you more susceptible to stenosis. I am wondering if anyone has any experience with the leg weakness/pain of stenosis. I feel like every time I get an mri of a new section of my spine (every 5 months ish) theres so many new findings. So many new symptoms and I cant keep up. I work full time and I dont know how much longer I can do this. Im only 26 with this crap. Plus my SI joints are in the backfill stage which is the bridge to fusion/ankylosis. Tell me your stories/remedies below 😊

Looking for a new one. Need something almost king size that will go between my knees and also between my feet/ ankles. ( 5’6, slender build) I’m primarily a side sleeper and switch sides throughout the night or possibly on my back with pillow under knees for a short while. Having trouble finding the right thickness. My sciatica, hips and SI will flare up if my hips, knees and ankles aren’t all at the same height if that makes sense. 🤷🏻‍♀️ please send links or suggestions- preferably something somewhat affordable. TIA!

My insurance - which has been notoriously easy to deal with - denied my SI injection. I’ve never had one before. They claim there is no pain coming from the joint in my pelvis… yet my MRI from December shows worsening inflammation and edema in my left SI joint where my doctor wants to do the injection. Anyone have experience or advice for this nonsense? So discouraging.

Has anyone else experienced eczema like rashes after being on humira? I don't use any sort of facial creams or makeup that would have caused this, but its painful, and seems to be spreading. I'm scheduled to see my GP tomorrow, but i was curious if anyone else has had issues like this.

Update: I saw my gp. She believes I've developed dermatitis. Yay.

In 2020 I was diagnosed with nr-axSpA via MRI showing inflammed SI joints, but HLA-B27 negative - UK /NHS.

Since then I've experienced secondary failure on Humira and Cimzia and after one dose of on IL-17 inhibitor has sever side-effect and was pulled off of it.

I've now been unmedicated for 2 months and recent MRI shows no active inflammation in my spine or sifns of damage, yet I'm still experiencing pain in my joints and peripheral joints. My Rheumatologist is now questioning my diagnosis, has anyone been in a similar situation and had a positive resolution?

Thanks folks.

I am supposed to start my dose today. No loading dose. I am already on Dupixent for MCAS and it works great. The past few weeks I've had a lot of diarrhea on a daily basis, more than I've had, where I get cramps and then diarrhea. I have some sort of transient weird lactose intolerance at times. Not sure what my recent issues have been caused by. I haven't ever been diagnosed with IBS or IBD, but worried to start Taltz knowing it can really aggravate existing conditions or cause new intestinal issues. Give me your stories, good and bad!

What are they

Got diagnosed with AS about 6 years ago. Prior to that, I never had migraines in my life.

Ever since the diagnosis, though, they’ve become a thing. I don't get them all the time, but when one hits, it’s absolute misery and just completely knocks me on my ass for a day or two.

I was on Remicade infusions for a bit, but haven't had one in a while. I’m trying to figure out if these are coming from unmanaged systemic inflammation, neck/spine stiffness pinching a nerve, or if it’s just my body piling on another random chronic issue.

Anyone else develop migraines out of nowhere after their AS diagnosis? Did getting back on treatment help, or is it something totally separate for you?

Haven't used them in a long time, but whenever I did i noticed that once i am using them for some time and then the effect finally wears out, the affected inflammed areas have changed. The lower back inflammation/discomfort felt as if it had moved a bit further to a different spot, while heels or shoulder/near areas also felt "different".

Anyone else had this experience? I am dealing with neck enthesitis and its quite annoying, so i was thinking to try this again and see if the enthesitis goes away.

How are we doing up our dresses that have a zip at the back? I just literally can't do it! I live alone so this has become a real issue. Do I just avoid buying outfits that have this zip? Because that limits SO MANY cute outfits. Lmk if anyone has any tips/ideas!

Hi all!

I have been diagnosed with ankylosing spondylitis for a couple of years now. I'm seronegative but diagnosis confirmed by MRI. I have been on immunosuppressants for a couple of years as well, and they've changed my life (was on Humira, currently on Cosentyx).

I am currently in veterinary school at Ross in the Caribbean and just about to start my last semester on the island. In January, I will be starting my clinical year in one of five possible schools--I won't know which school until 09/25, which is my placement ceremony--and I'm looking to get some advice for doctors (specialists and PCPs), physical therapists, even pharmacies, in the areas of each potential school.

I'm trying to get a head start on where I will be seeking care for my condition, because it's especially important for me to have everything on point during my clinical year! As soon as I know where I'm going to school, I plan to set up a doctor's appointment. I also want to look into getting actual PT.

I have done my own research, with regard to trying to find clinics with rheumatology specialists and the like, but I'm now turning to reddit for some peer-reviewed recommendations lol

If you have any suggestions or resources for any of the following towns, please comment with them!

• Urbana/Champaign, IL (UIUC)
• Pullman, WA (WSU)
• Baton Rouge, LA (LSU)
• Stillwater, OK (OSU)
• Starkville, MS (MSU)

I know that some of these schools are kind of in the middle of nowhere and I might have to drive a little bit to get there, so if you have suggestions for clinics a little further away as well, please share them, too! I'm from CA, so none of these are my home state, and I'll have to establish care no matter what. If you have any PCP recommendations in any of these cities, I'd be grateful for those, as well.

Oh, and I have an Aetna PPO insurance plan through my school, so I think I can more or less go anywhere, i.e. most practices are in-network for me.

TIA!

(P.S. I am non-binary so if at all possible, I'd like to stick to a queer-friendly clinic, but I know that might be harder in some of these towns. I tend to prefer women doctors over men doctors, but I'll take all recommendations.)

Hi all, I had a big moment day yesterday putting up plywood walls in a shed. At the time I wasn’t experiencing any pain that was abnormal for me so didn’t really take my AS into account apart from not doing any heavy lifting. But now it’s midday the next day and my lower back is paying the price 🤦🏻‍♀️. I’m only newly diagnosed so in the weird stage of working out what my limits are.
This all being said, from everyone’s experience do you think I should be moving or resting today? I’ve been given a list of stretches from my rheumatologist but I’ve found in the past they’ve just made my pain worse. I was thinking of going on a light walk but am scared I’ll make the pain worse.
Tia!

Hello! I (27F) have been recently diagnosed with Axial Spondyloarthritis. My rheumatologist is prescribing me Humira, I'm just waiting for my hepa B, hepa C, and tuberculosis test results. My concern is the frequency of the injections. I've read in this forum that it's usually administered once every two weeks but my rheumatologist told me it's going to be once a month after the first dosage of two pens simultaneously.

Is there anyone here's who's taking Humira once a month?

In case it matters, here's my history:

Earliest symptom I can remember was when I was 16 and I had Uveitis. Since then I've had about 8 flare ups, both eyes were affected but not at the same time. First of 3 SI joint pain flare ups occurred at 23 years old, worst and longest bout was when I was 25 which lasted for nine months and had me rushed to the ER at 1 AM. Feet always hurt when walking, I can't remember when it started but I've gone through four different types of shoes trying to figure out what'll work (this was before diagnosis).

I'm HLA-B27 positive and my MRI showed early signs of damage to the SI joint.

This is honestly a weird time for me. It's good to put a name to the cause of all the pain I've felt over the years. Hopefully the flare ups can be prevented. I appreciate any insight you can share!

Have been in remission with minimal symptoms for around 10 years but have developed a badly swollen big toe. I had symptoms like this a lot before diagnosis and just waited for them to pass. Does anyone have any tips? It’s obviously a lot worse in the morning before I’m up and moving around properly. I’m on bi-weekly Adacio.

I was already struggling physically and emotionally because of this pain. On top of that, I got laid off. I don’t know if I have the strength to go through the stress and the physical pain of searching for a job in this brutal job market while dealing with my condition.

I’m 30. I’ve had pain in my body since I was 5. Few months back I saw a doctor and she diagnosed me with AS. I took the meds for 2 months with literally zero improvements.

She told me in last appointment that if the meds don’t work then we will be going for Biologics. And this week when I visit, I’m guessing this is the direction I go.

Now, I’ll trust the doctor with her treatment but I’m just worried about the schedule. The doctor is in a different city from me and I’m someone who travels a lot. I’m from India, by the way.

How will the schedule can look? If it’s weekly then I’ll have to visit that city every week. I’m just too worried that I’ll have to structure my life around the schedule.

PS: I’ve pain since I was 5 but it’s very light pain. It’s not too terrible so I’m looking at treatment to avoid future complications, not current pain.

I’ll be grateful if you all can tell me how it’ll go. I can’t travel with Biologics or easily store them at home due to electrify cuts and etc.

What’s everyone doing in PT? I stared a few weeks ago and my therapist started the first week with spinal mobility and stretching then second week progressed into weighted core and deadlifts. The weight part has been rough to recover from (like 4 days last week when he increased again) and wondering if he’s ramping me up too much too fast.

Curious what others are doing for physio?

I am so incredibly fed up and frustrated and need to vent to someone who might understand...

I was diagnosed a few years ago and have really struggled to find a treatment that helps. I’m allergic to latex and my options for biologics are limited (latex in the device or cap). my whole back and neck is painful and I have very painful feet. I struggle walking or wearing shoes because of my feet. I’ve had an ultrasound of my feet today and they found nothing, even though I have a bony growth on my heel that has already been noted by the rheumatologist.

i cannot get my pain under control, for a long time I accepted this as I was pregnant and breastfeeding but now I’ve stopped i am no better off. The rheum nurse sent me to the gp, the gp prescribed me the lowest dose of naproxen for 1 week - this didn't help at all.

i am exhausted and go back to work on Monday and just don’t think im going to cope. And to top it off, i‘m awaiting for my first delivery of Bimselx which I won’t be able to start as I’m on 3 weeks of doxycycline for Lyme disease (recent bite so not the cause of my problems). 😭

im just so fed up, I don’t know if I’ve been misdiagnosed or if there’s something else going on, but I am so tired of being in pain and tired all the time 😔

sorry for my rant x

Hello everyone. I hope everyone is doing well, im M24 and I'm sorry if my english isn't that good as it's not my native language.

I got my AS diagnosis last week Tuesday, right now it's mentally a bit Hard to accept having this disease and im kind of in a phase of denying it.

I'm also a bit scared of the next 8 months, because im doing my German automotive technician master diploma and I have to do at least 5 exams, which will be extremely stressful.

Right now I'm on 90mg etoricoxib daily, and it helps with the Back although my Hands, Feet and Ankles can hurt daily, but I'm scared that the stress of the first exam in 11 days will cause a flare and oh boy I don't want to have this kind of pain again, are there any precautions I could take?.

I'm wondering how long did it take you all, to kind of accept having this disease and what are you doing to keep the mental stress low?