r/ankylosingspondylitis

Hey everyone,

Just wanted to share a frustrating experience and see if anyone has experienced the same. I got diagnosed with AS a couple of years ago. My initial MRI showed mild marrow edema suspicious for inflammatory sacroiliitis

I’ve been on Humira, Cosentyx, and now Remicade with varying degrees of improvement from pre treatment but the pain has not gone away. I had to beg my rheumatologist to increase my Remicade dose from 3 mg/kg to 5 mg/kg because she decided to underdose me for some reason. I used to be so active, and now I can barely do anything. I used to play tennis 3-4 times a week, and I was a damn good player. Now I’m just a shell of myself, and every time I play I suffer for 3-4 days afterwards.

I got another MRI recently that shows there’s no edema and now just a possible small erosion where the edema used to be.

I’m still in a lot of pain. I have been doing PT, I’ve gotten SI injections, I take indomethacin three times a day. I feel like an impostor that I can still have so much pain when it was initially mild and the most recent MRI barely shows anything. I feel like everyone is going to stop believing that I’m suffering.

I’m tired and fed up with everything, I want my life back so badly. If I sit I’m uncomfortable, if I’m active I’m uncomfortable. It’s like there’s no place to hide. The only time I’m vaguely comfortable is after I take a gummy and lay on my heating pad. Some days I feel like it’s just all in my head, like I can’t possibly be hurting as bad as I am with my imaging. Y’all please tell me it gets better, I’m 2 years in and I see no end in sight.

Quick background: Newly diagnosed. Confirmed blood test for gene and confirmed via MRI. Found fairly early due to terrible uveitis, although struggled with terrible “spells” of very lower back pain for a few years.

I was started on Naproxen for a month and I literally felt amazing. I didn’t realize how stiff I really was daily and just living with it. Doc was happy bc “NSAIDS usually work or they don’t”. As in no real grey area. I going on month 2 and then going to swing to as needed. The past few days though I am in pain and feel like I haven’t taken Naproxen but I have as prescribed. Today my pain is pretty terrible. So now I’m confused. Do NSAIDS just stop working all the sudden?

I guess I am also confused what a flare is as I’ve seen so many people have so many different symptoms. Midday yesterday I got so fatigued, like the flu hit me or something, and had to go to bed. Today I’m in pain. The pain in my lower back and but its awful when sitting and when getting up and down I’m trying not to scream in pain. I did see someone else’s post on flares, so I’m reading that as everyone answers.

This is quite a late connection for me but I realised today that I already knew movement helps my back, SI and hip pain. The morning melt, as I call it, as if everything is thawing out from its frozen stiff pain. But also, it helps lift the foggy, fluey feeling sometimes. Not consistently but this weekend it successfully did.

Does this happen for anyone else?

So, for some context, I am 19 years old and a university student with a rather complex medical situation and yet nothing is diagnosed. I have been looking into fibromyalgia but was suggested to also look into AS due to the similarities and comorbidities, and I do follow a lot of symptoms (almost too scarily close).

Yet, this is where my title comes in, I still can't bring myself to push it. I see people talking about flare ups, and just how horrible the experience can be and I currently don't find myself like that. I experience a lot of daily experiences that are constantly bothering me but never a distinct "flare".

I have probably had distinct issues that resonate with AS for about a year and as much as I understand that I could have caught it early, I am still struggling to persuade myself to talk to someone about this because it's not as commonly known about and so I am scared that I won't be able to correctly advocate or get the right tests - not to mention how being wrong or getting misdiagnosed could cost me a lot going forward.

Any advice? I know this may be a long shot, I am currently sat trying to deal with pain, whilst going through Reddit, so I wanted to at least give it a go reaching out to people who may know.

I'm newly diagnosed and looking to build myself a travel bag with "must haves" to bring when I leave the house.

I'm a 32 year old woman who has the fun gastrointestinal features and bladder irritation as well.

What items do you keep handy?

Has anyone failed Yuflyma? If so, which biosimilar(I don’t have insurance) has worked for you? I’m going on my 6th month and there’s hardly to any change. I’m still in a lot of pain.

I used to love concerts. Bouncing around and singing with my friends, the throng of bodies all dancing together because the music and atmosphere is so fun!

Recently, even though I knew it couldn't work, I went to one. The music was great, the show was great but I had to take drastic measures to get through it. I ended up having the most awful flare up and other stuff I don't want to talk about.

I realized that I'd never be able to do it again. Today a friend told me about an AMAZING gig coming up and in a sad moment we both realized that it could never happen. And my heart is breaking.

I'm sorry about the sad dump but I don't want to burden anyone else with this sadness.

I know that you guys understand what this disease takes from us and it's okay to grieve.

Hey got diagnosed with A.S today after my first appointment with the rheumatologist, the best and popular one in our city. After 3 years of right sided lower back, tailbone, hip joint, wrist pain and shoulder blade popping, this is what the diagnosis is. Also, I’m hla b27 positive and today the doc told me to get three tests done: Igra, Mx and triple serology. They took blood samples and injected a little injection in my forearm skin and by my reckoning, I guess thats for the Mx test, they also gave me a vaccine shot on my left shoulder but I cant see the name of that vaccine on the prescription clearly cuz its a lil garbled. So whats next in line for me guys huh

Give me every tip you know of, ofc if you have the time to.

And I would appreciate any help, info yall will give thanks.

Hey everyone,
I’m curious if anyone else with AS experiences frequent, loud cracking or popping in their neck.
For me, it feels like pressure builds up at the base of my head/neck every so often, and turning or gently tilting my head causes a sharp pop or a series of "Rice Krispies" crunching sounds. Sometimes it gives a temporary sense of relief or releases stiffness, but other times it feels like things are constantly catching or resetting every few minutes. Especially when I keep my posture wrong.
Is this a common thing with cervical spine involvement or muscle tightness in AS? Does anyone else deal with this daily, and has anything (PT, gentle stretching, warm heat, biologics) actually helped tone it down? 
Appreciate any shared experiences or advice!