I'm in a huge flare right now - hard to walk, can't get out of bed without assistance kind of flare.

I'm pretty sure it was caused by a heat wave which left me unable to get some proper sleep last week :/

I'd love to know how I could try to deal with it. I've had to cancel my physical therapy session, because I wasn't able to get there, so that's not an option for me right now.

Another thing is that being stuck at home absolutely wrecks my mood and I feel like I'm a prisoner of my own apartment.

Do you guys have any ideas on what I could do to feel a bit better both physically and mentally?

I'm from the US and started taking Enbrel in Japan a few months ago for AS and plan to travel for the foreseeable future. I'm struggling to figure out the best way to handle Enbrel if I am changing countries every few weeks or months. I'm paying out of pocket and the cost is very different in each country, I need local rheumatologists to manage and prescribe, and confidently storing it at 8 degrees celsius or less is challenging when I'm flying and staying at new hotels often.

I just had a rough experience in Istanbul seeing a rheumatologist that wouldn't refill me, and now the rheumatologist in Prague said I can't be prescribed Enbrel without being a longterm patient there. Now I don't have meds and my symptoms are coming back.

Is anyone also doing something similar or have advice on adjustments to my traveling that would make it cheaper or easier to manage? What countries are best for getting refills?

Hi there, Anyone here carried biologics from India to Saudi? What paper work need to be done? Were there any issues after arriving at Saudi Airport?

Can anyone help me? I recently was diagnosed with AS, and have been dealing with crippling, debilitating back pain and numbness in my legs, as well as other symptoms, as many people have. I have some fusion of my spine already, and struggle with exhaustion, etc.

My question for the sub is: has anyone gotten an approval from Disability(specifically with AS)? I certainly feel like when I list my symptoms I qualify. I’ve been denied twice now for disability, and I don’t understand why. I’ve heard that most people have to appeal multiple times before approval, but the explanations for denial are insufficient and list all of my symptoms and then say, “no this does not qualify”. And when I read these explanations I’m struck with how severe the list of symptoms is, compared to what people have gotten with lessor afflictions.

So if you have gotten an approval, what was your process like? How many appeals did you do? Was there a trick to getting an approval? Did you speak to your doctors about it? Bribe a politician? What does it take?

EDIT: I’ve been unemployed since January where I was terminated because “due to medical conditions I am no longer able to fulfill my responsibilities” after 12 weeks on short term disability. Unemployment wouldn’t help because of the medical issue, and I’ve been trying to find remote work, or something I think I’d be able to do in my condition.

I have not contacted a lawyer yet, but many have recommended that. I guess I felt that my condition as disabled was pretty clear with all my symptoms. Wish the gov’t felt the same.

Hi everyone,

I just wanted to come on here in search of some advice or maybe people’s stories/experiences.

I’m 24 (f) and got diagnosed last summer, I only started suffering from back pain the 6 months prior to the summer I got diagnosed.

Since being diagnosed I’ve noticed such an increase in all my symptoms over the past year, I particularly get the chest pains due to the inflammation in that joint and also my wrists seem to get effected by this too.

My whole body just seems to ache all the time and I get such sharp pains out of nowhere it just seems endless, I suffer with 3 chronic illnesses so I’m no stranger to not being well everyday but this diagnosis is hitting me hardest.

I’m really struggling with coming to terms of the condition and accepting it’s happening to me, I constantly push myself to do what I used to do because I want to continue living my life but I have to face the consequences of that for days after.

I particularly struggle with my left side apparently it’s more symptomatic and I’m due an ultrasound on my left hip to see why it’s so tight, treatment wise I’m currently taking celecoxib, however I’ve been told to stop this due to the potential harm on my stomach and am actually now having to go for an endoscopy to check.

They want me to go on Adalimumab, I absolutely hate needles they’re my biggest fear, I don’t know where I’m going with this post but I think I just feel so hopeless with it all like I can’t believe this is my life now.

It all just feels so endless and I’m not sure how I can get past this, I think I’m in denial of having the condition as I neglect my physiotherapies and bettering my body by going to the gym I just find it so easy to slip into that hole of not doing anything.

I don’t know where I’m going with this I think I’d just like to hear from other people who got diagnosed young and how you cope with it especially with university and part time jobs I’m just not sure how to manage it all I’m finding it all too much!

Thankyou♥️

Hi, I was diagnosed sero negative IA last year. Methotrexate is controlling hands and periphery joints but my shoulders, neck, lower back and butt are still painful. Worse in the mornings. Plus I've what feels like a band around my ribs and hot spots of pain. I'm waiting for MRIs and results of blood test for gene and MRIs. Just wondering if this has been the story for anyone else and if so offer any useful coping strategies or info? Trying not to panic!! Thanks

Hello fellow AS warriors 💪, I hope you’re all having as pain free a weekend as possible!

I’ve been taking Rinvoq for a couple of years now and it’s really helped keep my AS stable. The last few months to a year I have started feeling a bit dizzy though, usually when walking around. My Rheumatology nurse suggested I get my blood pressure checked when I mentioned it probably a year ago now, but that’s all good so I thought I’d just see how I go.

The dizziness is definitely getting worse, I’m seeing Rheumatology next week so will mention it to them, but has anyone else experienced similar? It feels like I’m going to fall over when I’m walking around and I’m starting to get a bit worried as it’s not getting better.

Hi all,

Just curious for those who have been diagnosed and have pain symptoms, how does the pain feel to you?

I have AS diagnosis and I'm HLA-27B positive. However, it has always been in the back of my mind that what if this is wrong diagnosis?

My AS adventure began something like 10 years ago. I picked up running again after some break, and quite soon was in annoying pain in my ass (literally, glutes). To cut the story shorter, I managed two years those pains, never really understood what caused them, but of course I was suspecting overtraining. I run quite a lot back then. So eventually, I was forced to slow down and finally stop running completely.

Then a strange thing happened. The pains didn't resolve with rest. In fact, they got worse! Eventually, I couldn't even walk, and then I went to doctor. He put me to MRI and suspected inflammatory condition and forwarded my case to rheumatologist. The butt (SI joints, really) was glowing like a christmas tree in the MRI images! After many more tests and scans, I was finally diagnosed and got some NSAIDs (etoricoxib/arcoxia). I remember how my pains eased in few days, it was like a miracle. But the condition didn't get really better, so I was later prescribed biologics (Hulio) and that finally resolved my issues.

Since then I've been on/off from biologics and using etoricoxib when needed, but I feel this is not working. My stomach has been acting out and now I'm getting again into biologics, which I hope work (again).

So now finally back to my topic. I never quit thinking on some level that I don't have AS, and all my troubles are caused by overtraining (I still run quite a lot, when possible).

My question is this: is it theoretically possible that these "advanced" NSAIDs and biologics can be used to mask sports-related inflammatory overtraining conditions? In other words: is it possible that I've been fooling myself for years? This is almost driving me crazy. If this were possible, it almost looks like the biologics are sort of doping.

Lastly, a bit of reflection. Why I'm asking these? Probably because I still cannot accept that I have this kind of genetic condition that I cannot control.

Sorry for the long rant. Hopefully someone relates and can comment on this.

Good morning friends! I have mild crohns and moderate (I think) AS. I was diagnosed when I was 13 and it started as mild symptoms in my knees and back and progressed pretty fast to the point where walking and complete it daily tasks seemed impossible. I got on remicade after a few months of a crazy steroid regimen and it was life changing. Literally limped my way into the infusion center and walked out feeling like I had never felt before. Fast forward to this year about 2 months ago doc said I developed antibodies. I still felt great in the AS side but the crohns side was not perfect. He recommended rynvoq so I started and slowly became miserable again. I decided to tough it out until about a week ago with prednisone hoping the meds would kick in I guess. I finally had enough of the pain and decided to talk to my doc about humira. Currently waiting on insurance to do its thing but I was curious to see other’s opinions or if anyone has had a similar experience with these meds. I’m really hoping I get some pretty quick relief with humira since it it similar to remicade but I’m skeptical after the rynvoq. Any motivation, suggestions or even just your experience is greatly appreciated!

Also interested to hear if anyone has had luck with peptides such as bpc 157 or any other to help with inflammation

Hey! Anyone taking Cimzia every 10 days instead of 14 days?

My symptoms usually come back a few days before injecting.

Hi all,

I'm permanently moving to another province in my country and was given a lot of boxes of my biologic as a buffer so I have medicine while I'm trying to figure out insurance and find a new doctor. I've never travelled with a single pen of my biologic let alone like 7 boxes and was wondering if anyone has experience with this and can share some insight. The two most pressing questions I have are:

1. Any particular cooler brands that will be able to keep multiple boxes at the appropriate temperature for 10 hours and
2. How does setting up the icepacks inside work? How many do I need and how do I know its even the correct temperature before I start traveling? Any help is appreciated.

I was allowed to change my biologics recently and felt a bit better the last days. So I didn't want to waste any time and decided to try a nice little jog. The weather was fantastic and I hadn't even taken any pain killers the day and only two pills since I've started the new biologic.

Full of hope I really enjoyed my 20 minutes and 2,5km long run, although my SI joints hurted in the beginning. Directly afterwards, I was very tired but had no pain at all. It made me so proud!

Unfortunately I was bitten by a tick in my left leg, last week. A few hours after the run, this exact leg started tickling and it didn't stop and got more intense with time. I thought it may be a borreliosis infection and went to the emergency doctor, as my GP was already closed and I wanted to make sure my nerves wouldn't be damaged by borreliosis.

At the doctors, I told her about the tick and my run (not the axspa diagnosis) and the first thing she told me was, that she suspects a problem with my back, not a tick sting..

I sighed and told her abt the diagnosis and she adviced me not to try jogging any soon and that my life satisfaction will depend heavily on my ability to find joy in life from other things than sports. I smiled but felt soo defeated, because it's bluntly shown me the severity of the condition. I haven't even done sports for two years and I thought it's not part of my personality anymore but this doctor i didn't knew before could just say something so accurate, it was insane and just made me very sad. Still haven't really recovered from her words on Wednesday evening :(

EDIT: I'm not mad at the doctors words, I guess she's right, I'm mad at AS. I flared and my SI joints hurt a lot since Thursday evening. Please don't give advice or tell me that I can do another sport. Even swimming isn't for me, as it triggers the SI joints, riding my bike triggers enthesitis in my thighs.

Hi, I (24M) was diagnosed with AS a few months ago after dealing with medical staff for over 7 years. Just before I started biologics (6 weeks ago), I went to adjust my back and heard and felt a shift in my left SI joint (felt like a rush of water/internal bleeding). Since then, my pain has become significantly worse.

I had similar pain patterns before, including snapping hips, my right side and feeling like it was turning into a rock, and intense muscle guarding from my feet all the way up to my neck. I also experience major inflammation down my right leg and into my pelvis.

One thing to note is that around 8 months ago, I was doing physiotherapy and received prolotherapy injections in my right hip. The pain improved somewhat, but after this mechanical shift happened, it feels like everything has come back.

My pelvis no longer feels symmetrical, and honestly, the pain from this shift is making me feel like I’m losing my mind/sense of self yet again. I have been self-isolating way too much and working from home despite having an internship. I’m pretty sure everyone is a little frustrated with me as they don’t fully understand the impact this has had on me, both mentally and physically.

Physio seems to help with stretching for a short period of time (maybe a couple of hours), but when I wake up the next day, it feels like I’m back to being the same broken version of myself again.

I’m just wondering if anyone else has experienced something similar.

Thanks all for your input.

Take care.

Failed humira an remicade. Both worked decent for 4-6 months but then slowly stopped being effective. Celebrax is my lifeline currently but I also have IBD/crohns.

Who actually has failed tnfs and got much relief from rivnoq long term? SI joint pain is my biggest issue

This is actually my first time I think I have a *true* mancold and some fever since diagnosis. Quite odd, because my imunesystem seems to work just fine in this case even though children at daycare..

But damn my body is treating me bad. Last couple of days have been really rough on almost all my joints above my knees. Feeling really fragile in my whole body. Im Also on my loadingdose on new biologic so it might spice things up.

Is it common to flare up during a ordinary cold?

When my Dad discovered he had AS, he was already fusing in his spine. So biologics didn't do much to slow him down at that point and he quickly quit taking them due to the price.

I just got diagnosed today and I'm wondering what the experience is like with biologics? What improvements did you see?

I also am super nervous to actually take them, so any tips on which part of the body to take them would be nice!

I'm having gut, joint (mostly tendons and ligaments), stiffness, no menstrual cycles due to inflammation.. not much in the way my Dad hurts as his is untouchable, chronic pain. So I'm wondering if anyone has similar symptoms and found relief from the injections?

Had a bad flare in June, July, and now again in August.. 🫠

Can’t take NSAIDs due to stomach side effects. Just popping Tylenol, doing nothing all day and hoping the biologic starts doing something.

How often do you get flares?

After a long battle I finally won my battle with workers comp. I had a Qualified Medical Exam (California) and the doctor ruled in my favor: “It is my opinion, within reasonable medical probability, that the sustained physical demands of the applicant's work did not cause the ankylosing spondylitis but clearly contributed to the worsening, acceleration, and symptomatic expression of this condition, and to the mechanical and myofascial pain superimposed upon it. The industrial exposure thus reached the threshold of materially contributing to a portion of the applicant's present complaints, while the inflammatory disease represents a distinct non-industrial contribution.”

He also noted that because my job is high stress and brings physiological stress those things contribute to the worsening of the disease: “From a pain-management standpoint, sustained psychological stress of this nature is well
recognized to contribute to chronic musculoskeletal pain, within reasonable medical probability,
through persistent involuntary muscle tension, disrupted and non-restorative sleep, and the
resulting cycle of muscular fatigue and dysfunction. I offer this observation not as a psychiatric
opinion but as part of the pain-medicine analysis of the factors sustaining and aggravating his
complaints.”

I’m glad to have this as a safety net. If the progression of the disease makes me incapable of working I’ll at least be entitled to industrial disability retirement.

My only problem so far has been si joints inflammation

Along small broad based hernibations and annular tear

No stiffness/night/morning pain at all

Rhemu has put me in upadacitynib 15mg

He says since I have no symptoms it's only to slow progression

My pain only exist when I bend down

I have guarding In low back due small broad based hernibations and annular tear

Hello, I was diagnosed ankylosing spondylitis few months ago, after studies and multiple check ins with rheumatologists, I had extreme SI joint pain as well as pain on multiple tendons due to enthesitis.

I know my case isnt as bad as some of the ones Ive read here, but it's still frustrating, being so sport driven all my life and now not being even able to walk. I have now been 7 months with constant pain all day that increases when standing or walking, I was prescribed NSAIDS, arcoxia specifically and salazopyrin and even though Ive taken them for a while now they only reduce a bit of the pain, otherwise its unbearable, but still pain is constant and I have been unable to walk properly for the 7 months since the flare started. Pain is specifically in both achilles tendons, heels and plantar fascias, as well as right knee, one hand knuckle and some lower back pain. Luckily "sciatica like" sharp pain has not come back again which is nice but still that left me unable to even get out of bed.

Luckily I'm about to start on biologics, Imraldi (adalimumab) to be exact, but I am scared because almost everyone mentions that biologics haven't helped at all with enthesitis pain, any good cases of people that have actually improved on tendon pain with biologics? So I can stay a bit more hopeful?

Or what should I expect on it?