I was diagnosed with AS and DISH after falling off a ladder and fracturing T8 vertebrae. It was a nasty fall and I suffered a massive amount of pain at the time. That was ten weeks ago and the daily pain has settled down to pretty much a constant ache in my neck and spine and rib cage. I would appreciate hearing others experience on healing after a fall and how long it took to get back to pre-fall condition.

I am 3 months into biologic therapy using Amjevita, and I randomly get upset stomach and diarrhea that lasts about a day and then goes away. I don’t remember this ever being an issue before, so I am assuming it’s the biologic. Is this a common side effect?

One thing I have figured out after getting AS is that One of my triggers for the illness seems to be Pepsi Max. I can go for weeks without pain or inflammation. Then deink one Pepsi and my back is acting up again.

Anyone else feel the same? What is the cause of this?

I was diagnosed with Ankylosing Spondylitis and have been suffering horrible pain for years before diagnosis. I was finally put on injections (Simponi) and boy. I feel like my spine is not trying to tear itself into pieces? It gives me hope. I want this medication to work long term. I wanted to share this joy with others who know what it's like!

I'm just looking for some support. I've been on prednisone for 7 months now following a UC/joint pain flare. My UC went into remission, but every time I tried to taper the SI joint pain would come back. My gastro referred me to a rheumatologist. I'm finally going for my MRI next week and she advised me to come off of the prednisone to see the full extent of what is going on and I am terrified.

I'm scared of having to face what is actually going on in my body right now. The prednisone keeps wearing off and I keep having to up the dose. I've been at 10 mg for a while now but over the last couple weeks I can feel the ache in my hips/SI and lower back and shoulders/shoulder blades returning. Only this time, instead of increasing the dose for a couple weeks and tapering back down, I'm just going to be completely stopping it.

I know I'm going to be immobile. I know the pain will be extreme and I will have heart palpitations and chest pain. I'm scared my UC will act up again and I won't be able to get the bathroom in time due to the pain. I'm just feeling incredibly vulnerable and scared.

The plan is to go back onto prednisone at a high dose to get things under control then taper back down to 10 mg until I have my follow up appointment. I'm hoping I will finally be prescribed a biologic (my rheum and gastro both agree I need one, we just need enough proof for insurance to approve it). I desperately want to be off prednisone and have some answers and proper treatment.

So I started taking Rivoq about a week ago and woke up this morning not feeling well and I think I am coming down with a cold. What should I do? I don’t want to have to stop taking it for a few days since I’ve only been on it a week, and I don’t feel that sick just a little bit of a cold. Does anyone else who’s been on Rinvoq have any advice?

TIA!

Hi! For those on Rinvoq-how long did it take you to reach full benefit? I noticed a difference two weeks after starting it. A week ago, 1 month after starting the medicine, I felt really good-my pain was at 4/10. But then, I got informed that I should lower my celecoxib dose from 400 mg to 200 mg. Since then I’ve been much worse, I struggle to concentrate in school when sitting down, I can’t walk as long as before, the pain is at 6/10. So now, full effect from Rinvoq seems far away, and I feel sad because of the setback. I’ve now taken it for 6 weeks.

Hello Everyone.

I've had AS/ PA for almost four years, I was disabled for a few months before Sulfa kicked in, before my biologic tremfya 4th dose I was really well. Great results until two weeks in after my fourth dose I lost sensation on my face, my arms and fingers had pins and needles. My whole face is numb, has anyone experienced this? Also noticed a lot of short term memory loss too. I've had 0 pain and very upset that I'll have to try another biological, I'm not keen to.

They're denying it's the medication, but it's the only thing I've had, and they've done the MRI's and I saw a neurologist too that confirmed it's nothing.

I use to be on Sulfasalazine for four years and pred too.

Anyone else on this drug?

I swim often but never freestyle(due to neck restriction). Yesterday was the first time i could do 25m at one go!

After that lap my calves were painful similar to the kind of cramps one can get at night. Does anyone have similar pain while swimming or not and what do you do apart from calf stretch that helps? Thank you.

Hello,

I finally saw a rheumatologist after 3 years of the condition. They gave me 8 weeks of NSAIDs and wanted to see me again after 8 weeks where we'd discuss how they had helped and possibly get me on biologics.

The 8 weeks had long passed and I called the hospital to just check it was still in the works. They said the waiting list for follow-up appointments was actually 2 years long. Pretty devastating to hear. But they mentioned I could ask my GP about sending a request to expedite my case.

Does anyone know anything about this? Is it likely to go anywhere or will I have to be actually dying to get it expedited? Any idea what criteria they would judge this on?

And secondly, does anyone know if this 2 year wait is normal? Or if my hospital is particularly bad.

Any other advice?

I really thought that having passed the waiting list for my initial appointment I was inside the system and I'd be seen fairly soon. I foolishly put a lot of hope on this and mentally put my life on hold thinking it could all gt going again when I received treatment. :(

Finally, I'm done with starter dose (3 doses). Feeling a lot better now and living a painless life. However my Hb levels were increasing (18.5) which rheum says that it might be a lab error and he was right, we tested again at the hospital lab and it turned out to be (16.3). But still my Hb levels would be around 13-14 levels before I started with Remicade. Have anyone faced this issue?

As a maintenance dose, my rheum suggested 4 more doses that I need to take every quarter for better results. How has your dose been after the starter dose? Is it actually necessary?

Newly diagnosed and found out that I am not only the only woman with endometriosis who has AS, but the literal only woman diagnosed with it ever for both my PCP and rhematolgoist. I find this odd seeing as I’m from Boston MA, top doctors in the country ya know? So I’m wondering, is treatment any different for men vs women with this? Or does this fall under the severely under funded womens health issues bracket? I see here all the time women posting, is this just an incredibly rare thing and we just found each other through this subreddit?

Make sure that you keep a diary of what you consume...and the outcome of how you feel... Stay Blessed & Keep God First... Oxalates/Oxidative Stress is no joke

I have a few websites here for you to check out... Maybe you can find you some relief... By the way, try including some egg whites & coffee in your weekly diet... see how you feel after the egg whites & coffee... Here are a few websites listed below... check them out...also vitamin B-6, calcium & magnesium may also give you some relief from Ankylosing Spondylitis...

https://mosaicdx.com/test/organic-acids-test/

https://mosaicdx.com/resource/high-oxalate-a-major-factor-in-tissue-and-blood-vessel-health/

https://www.washcoll.edu/learn-by-doing/lifelong-learning/food/detoxify/oxalates.php

A 7-day diet plan could include

Breakfast: • Oatmeal with low-fat milk and berries • Greek yogurt with a sprinkle of nuts • Scrambled eggs with spinach and whole wheat toast Mid-morning Snack: Apple slices with almond butter, A handful of grapes, and Celery sticks with hummus. Lunch: • Grilled chicken salad with mixed greens, cucumber, and lemon vinaigrette e • Quinoa salad with roasted vegetables • Baked salmon with steamed broccoli and brown rice Afternoon Snack: • Low-fat yogurt with honey • A small serving of fresh fruit like pineapple or orange Dinner: • Baked tofu with stir-fried vegetables • Lentil soup with whole wheat bread • Lean ground turkey burgers with a side salad • • Key points to remember: • Hydration is key: • Drink plenty of water throughout the day to dilute urine and prevent stone formation. • Limit oxalate-rich foods: • Reduce intake of spinach, rhubarb, beets, nuts, chocolate, and certain berries. • Moderate protein intake: • Avoid excessive animal protein, opt for plant-based protein sources like beans and lentils. a • Choose low-sodium foods: • Watch out for hidden sodium in processed foods. • Include calcium sources: • Eat moderate amounts of calcium-rich foods like dairy products, fortified plant milks, and leafy greens. • Important note: This is a sample diet plan, and it's crucial to consult with your doctor or a registered dietitian to determine the best dietary approach for your specific type of kidney stones and overall health needs.

(venting)

It sucks. I'm in so much pain and haven't slept more than 8 hours total in the past 4 days. I'm miserable and it always makes me so depressed and feel like everything is so bleak and it makes me distrustful of everyone and feel so unhappy with everything. I do everything I possibly can to manage and I'm usually doing great but it's like the depressive episodes are inevitable because I will always at some point have a flare again, and not have any pain medication to treat it, and NSAIDs/Tylenol is never enough during a flare. My PCP's office refuses to do anything for me now that I'm taking biologics and my rheum always tells me to go to my PCP. I'm not looking forward to this for the rest of my life.

Hi, AS community, I want to first express what a gift it has been to find this subreddit after being diagnosed earlier this year (38M, HLA-B27+). I spent most of this year feeling mostly in the dark and unsure of what life is like for other AS-sufferers, but the posts you all have contributed help to normalize what I'm going through and anticipate what may or may not lie ahead. Thank you!

My Q is the following: where were you in your journey with AS before you considered biologics?

After a month on Diclofenac, my rhuema put me on Methotrexate, and she's gradually upped my dosage from 10mg weekly to now 20mg. I've read a number of articles/user posts here which don't give me a lot of confidence in Methotrexate for AS specifically, and I've seen my occasional knee/finger/back pain escalate this year so that it's a nearly constant nagging pain as I work from my home office, so I feel like my personal experience matches some of the skepticism. Avoiding sugar/alcohol, eating basic foods, exercising 3-4x per week (with swimming), and lots of rest all help prevent flareups, yet the symptoms seem to continue worsening. I have supplemented with XS Tylenol and am now trying Aspercreme for my hand/knee, per Doc's orders.

How bad were things for you before you considered taking the strongest form of treatment available to us?

A few months ago I posted about nerve and muscle pain that was giving MS vibes, Ive also responded to a few folks who are experiencing similar nerve pain and/or muscle cramping. Folks always asked me for an update when I have one - so here it is...

The MRI and followup lumbar puncture cleared me of MS. My spinal cord looks fine, and my spinal fluid was free of O-bands. I do have some bone growth on one of my c-spine vertebrae. This is could be evidence of AS in the c-spine. I also have no disc or mechanical issues present in the spine that could explain this - except of course the AS.

My leg numbness still occurs multiple times weekly. Im still not driving on the freeway because Im not sure I could slam on the breaks quick enough at freeway speeds in an emergency. I have rib cramping ongoing. If I'm tired, stressed, or super cold, the rib cramps are worse. I do have these weird shocks in my face that I don't have a great answer to - that might be related to the c-spine bone growth.

What's next: I'm pouring over studies on nerve and neuralogical involvement for folks with AS. While nerve issues, and muscle issues, are noted in a lot of the research on AS I'm not finding a clear disease mechanism. There are also a fair number of us on here experiencing symptoms that support the idea that nerve issues in AS arent studied enough yet. Making this more difficult is that I'm also HLA negative, having been diagnosed by MRI evidence of damage and disease.

So what's next? My neurologist and I already had planned on doing nerve testing to see if we can track down something concrete in the peripheral nerves. I have an appointment at the end of December with my rheumatologist to see if she has anymore ideas too.

Ill keep folks updated if there is any official resolution. Keep fighting folks - the nerve and muscle pain is real we just need to find the source.

Anyone with enthesitis / tendon inflammation in both jaws and the neck?

My creaky friends, I need advice. Every time I put my left foot down there’s a really bad pain in the back of my thigh. I’ve never had this (I’ve had AS for 13 years) and I have no clue what it is. Feels more MSK pain than nerve, so I don’t think it’s sciatica. Whatever it is, it’s horrible. Has anyone else had this? Was it a weird SI thing or a hamstring tendonitis? Gah

(For context, I’m a pretty fit and active 25F)

Been fully diagnosed and on biologics/meds for at least 2 years. Never had an mri. Last time I asked about one the doc said something along the lines of "no point, we already have a diagnosis". Do I need to ask for one next time? Had plenty of xrays but nothing visual in those.

Hello fellow sufferers,

Thank you again for joining this community.

With this post I want to share my story with systemic and body-wide tendon pain. I apologize for the length, but I wanted to be as specific as possible and also write it in a bit of a more narrative style, to add a human aspect. I might add in the comments some links to my medical reports or exams, if anyone is interested and could benefit from it.

A little intro about me

A few words about myself, before all of this happened. All of my life I have been very active and athletic, with a particular love and aptitude for the outdoors and endurance sports. Until the age of 21-22 I never had any injury or even minor ache despite a lot of running, hiking, cycling and so on. Starting around five years ago, I occasionally had some extremely minor pointers to a “particular” muscoskeletal conditon, as I developed a few bone growths and occasionally some weird (but not debilitating) tendon pain in a couple of spots across the body, often with not such a direct link to mechanical load. The affected spots were mainly my wrists, knees and ankles, but the symptoms were (compared to now) quite mild and intermittent. Given my extreme mechanical loading, I was thinking I just had a particular “predisposition” to develop injuries and that I needed to be careful with my body. Because of this I decided to run less and focus on cycling.

Despite this, between the age of 23 and 26 other than cycling I was often going on multi day hikes, backcountry skiing trips, mountaineering, and 10-15 km runs. All of this without major issues but sometimes some “strange” aches.

In those years my cycling shape improved dramatically, to the point that I started to do well in amateur races and even win a few hill climbs. In the spring of 2023, after a couple of years of more intensive training, I was contacted by one of the most prestigious amateur cycling teams of Italy and offered a sponsorship contract, which I signed for the 2024 season. I undertook a VO2 Max test that resulted in a maximum oxygen consumption of 77 ml/kg/min, which my team told me it was exceptionally high. At the time I felt ecstatic about the opportunity, which was kind of unexpected.

The turning point

Unfortunately, and coincidentally, a few months after this, during a race in October I developed a nagging posterior tibialis pain that I never had before, together with some discomfort in the outer knee. In the following months, I reduced my training load and started rehabilitation, physical therapy, underwent meticulous bike fittings with high-tech tools and so on. My pain was somewhat improving and after one or two months I was back to training 5-8 hours per week. Still, I noticed some alarming and exaggerated responses to small changes to my bike fit. For example, during a 4 hours ride with some of my teammates, I developed a sharp and deep ache in my interior knee, where I never felt anything before. The pain was so sudden and so sharp I barely made it through on my way back. At the time, I attributed to minor changes to my saddle and cleat positioning, but talking with my coach, bike-fitters, and physiotherapist it was clear that the response was abnormal. At that time, I had my first doubts I could pursue a competitive cycling career, but I would have never imagined what would come next. Despite that, I could still cycle, hike and exercise almost normally.

Fast forward to January 2024. Right after New Year I got an infection with high fever for 10 days, probably the most intense in a few years. I don’t know yet if it was a flu or COVID. I just know that that febrile episode changed my life like I never could imagine. Right after that infection, I developed a sharp sciatic pain that lasted a couple of weeks and then subsided, like I never had before. A couple of weeks after recovery, I started going back to the gym to work on rehabbing my “overuse injuries” with my trainer. I already had my doubts about my cycling possibilities, but I was trying to tell myself that it was all “bad luck” and “mechanical” and that since I was normal and healthy I could recover.

During that hour of rehab, I did exactly the same exercise routine as the previous 3 months: core exercises, single-legged glutes bridges and various dumbells. During that hour I was already feeling something “off” but I kept on pushing through.

The next days I woke up with staggeringly intense pain in both my high hamstrings and elbows, spots where I never had the minimum discomfort ever before. The pain was so intense initially that I had troubles sleeping and that for several weeks I could barely sit on a chair without a special V-shaped cushion. In the following months, the pain extended to virtually most tendons of my body: first shoulders, than ankles, hands, fingers and even jaw. The pain tended to get getter with rest and worse with repetitive or strenuous movement. Despite those clearly alarming signs, I initially tended to ignore the pain and push through. I still attempted some bike riders and even small hikes and runs. I was so dumbfounded and in denial that I could not accept what was going on. After a 1 hour hike/run the pain in my ankles and knees was getting worse and worse, and I felt sharp pain in other tendons like my hip flexors and abductors, also places I barely knew “existed”.

In general, looking at my symptoms I realized I had an incredibly exaggerated response to any mechanical stimulus. I immediately realized that my condition was beyond normality and I simultaneously booked two appointments with my city’s most renowned rheumatologists.

Seeking answers

The first one, who I saw in February, who also happens to be the head rheumatologist of my city, after ordering a bunch of bloodwork, US, MRIs, did not find any evidence of a rheumatological condition and gave me no diagnosis nor treatment. All my bloods tests were clean, and just some minor bone edema and effusion appeared to imaging, with the tendons themselves looking good, despite the persistent pain.

Right after that visit I came across this post by u/DeepSkyAstronaut and I saw a strikingly similar situation: tendon pain all over the body being over-sensitive to any stimulus. In that post, OP described his endless story and struggle with doctors and specialists failing to diagnose his condition, which increasingly becomes debilitating and severe, until 10 years after his first symptoms, thanks to his own research and self-determination, got a rheumatologists to listen to him and prescribe him anti TNF-a medications, having linked those invisible symptoms to spondyloarthritis. Despite having a couple of differences with my condition, I was then determined to go for an all-out push with doctors to at least try biologics, which OP reported helped him significantly.

Alarmed and warned by his story, I went to my second rheumatologists visit much more prepared, printing a clear overview of my symptoms and exams and bringing u/DeepSkyAstronaut story to the table as well.

All my bloodwork being 100% negative, my MRIs only showed:

• Minor to moderate marrow edema reactions in metatarsal, ankles, heels and femur
• Minor synovial effusion in my knees and ankles
• Minor signs of plantar fasciitis

The second doctor actually believed me and claimed having one similar case in his 40 years career, that responded well to Humira. Here’s his diagnosis: enthesophaties, consider serinegative undifferentiated spondyloarthritis with an exclusive entheses and tendon pattern, metatarsal stress reaction, myofascial syndrome.

Right after seeing my papers, he immediately claimed: you need a Biologic. Honestly, other than the widespread tendon pain by me reported, the evidence of bone marrow edema suggested him a condition of serinegative spondyloarthritis, as no impact or traumatic stress had occurred.

Unfortunately, the doc just retired a few months beforehand, and for the Italian health care system, biologics are hospital medication that needs to be prescribed by an active rheumatologists.

In the next four months I saw three other rheumatologists, including the whole medical team of the first one who visited me, who disagreed with the last diagnosis and were not willing to prescribe me anything other than muscle relaxers and NSAIDs, claiming that “there is absolutely no evidence of a rheumatological condition”. I was a bit in despair, but not giving up. In late August 2024 I managed to have a private appointment in a specialized centre in Milan, where the rheumatologists agreed that given my previous activity levels, debilitating symptoms and minor evidence from imaging, a trial of 2-3 biologics was advisable and justified, stating that “there are mechanisms beyond our current level of understanding” in tendon damage and that “biologics can target proteins having different roles in tendon degeneration beyond a visible inflammatory response”.

Well, unfortunately after that visit he doc recommended to go back to my hospital in Genoa (my hometown) and start treatment there. Unsurprisingly, the doctor at the hospital did not agree to what said in Milan and told me “we cannot do it here, it’s too risky and without foundation” and sent me back in my search for treatment.

Only in October I booked my 7th rheumatological appointment in less than one year, and the doctor finally agreed I most likely had a rheumatological disease and that suggested therapy with DMARDs or Biologics, confirming the diagnosis of “undifferentiated spondyloarthritis with a primary enthesitis component”.

I recently started Sulfasalazine, which for now gave me no relief, and hopefully in February I will be able to move to a biologic. More than this, in the last months I developed my knowledge of similar cases and started to understand more about other mechanisms of widespread tendon pain: oxidative stress, mitochondria issues and more, which I’ll describe in another post in the next week

PS: a few more words about my situation as of today

As of today, my physical activity is limited to 30-60 minutes of gentle walking per day, broken into 10-20 minute segments at most, occasional short bike rides (20-40 mins), and some gentle yoga or stretching. Even in areas where I don’t experience sharp pain, I am extremely prone to developing it with minimal exertion or repetitive movement. Some areas are particularly affected, such as my right anterior tibialis, left posterior tibialis, and several knee tendons, with certain tendons flaring up more than others. In these spots, the pain can be so persistent that it interferes with daily activities like walking, driving, and working.

Additionally, I sometimes experience discomfort in my upper body, including the shoulders, wrists, and fingers, also after light activities such as prolonged typing and writing, carrying objects. Also, I have a sensation of “thickening” or fibrosis of several tendons, which could hint at widespread synovitis or non-inflammatory degeration or fibrosis, but this was not really considered by any doctor. I also experience frequent popping and cracking noises related to my tendon issues when bending joints like my ankles, knees and fingers.

My husband (28M) is not diagnosed with AS, however his dad had it.

The past week or so his back and neck have been super stiff and then about 2 days ago his left eye started getting blurry. He went to an urgent eye doctor today and they didn’t really see any issues except for slight uveitis. Like very minimal inflammation, but still there.

Has anyone who’s actually been diagnosed have a similar experience? I know uveitis is a common symptom, but can it cause blurriness even without a ton of inflammation?

I’m just an anxious wife hoping he’s ok. If the steroid drops help, he’s going to look into being properly tested for AS.

I haven’t had a bad flare in a good while. I am on an anti-inflammatory diet on top of using low dose Naltrexone. Out of no where recently I’ve been getting stiff pain on my lower back every single night within 2-3 hours of sleeping, it stops me from sleeping the rest of the night. It sucks.. hoping this is just a flare that’ll go away soon. Super tired.

How long do flares usually last for you guys?

Hi! I was curious if anybody had experience with A.S. And vegetarian/vegan diets? I've been vegetarian for years and my fatigue levels are through the roof. I'm so exhausted most days I can barely function. Since starting cimzia my pain has gotten a little better, but the fatigue hasn't changed. Does reintroducing meat help with fatigue?

I try to be sure I get enough protein and B12 but something is still missing the mark for me. I know diets effect everyone differently, but any general advise or experience would be appreciated. :)

So I used to go to Hopkins, #1 in rheum apparently, but my doctor left. I was switched to a new doctor where I would only see their attending and I was under a significant flare up with no message responses, no one answers the phone. I was stuck.

Went to a different rheumatologist by recommendation of my cardiologist and now they’re changing my prescription dosages because they don’t believe I have AS.

Why can’t this ever be easy?? Why is it always an uphill battle with the damn disease?!

Does anyone else struggle with standing or walking around for more than a couple of short hours a day? I am hurting bad after 1, but I work 5.5 hours a day. By the time I get off work, I am in a pissed off mood, and everything irritates me. I can barely move anything without crying in pain once im home. I am being pushed to work full time, but my body can't even handle 5.5 hours. I have no idea how I am supposed to handle 8.

Hi everyone! I'm having a really hard time with chronic fatigue lately. I'm a PhD student and really need to be able to have the energy to go through my day without copious amounts of caffeine. Is there anything that y'all find helps with this particular symptom? I already sleep more than the recommended amount of time and get regular exercise.

IDK but I feel a lot better when I workout, the pain is much more tolerable, and I sleep better. hbu guys? We can make it y'all. Much love for all those AS peeps such as myself

Hi all,

I’m recently diagnosed with nr-AxSpa at 36 and am doom spiraling. Rather than continue to spiral, I thought to see if someone can help me (and others) out. So here goes.

I’m a week and a day into my first med, Enbrel. No effect yet - it takes weeks to months to notice anything, right?

I’m an HLA negative male with nr-AxSpa — biologics/JAKs should still work for me, right? I haven’t seen anything suggesting bios/JAKs don’t work for nr-axspa, and while I’ve seen there’s some limited evidence that anti-TNFs can be more slightly more effective or work longer in HLA positive folks, I haven’t seen that for JAKs or IL inhibitors.

My disease is “mild” in the sense that my CRP and other bloodwork for inflammation is normal and not elevated. But my pain sure isn’t mild. Meds work equally well / or generally well for folks even if their bloodwork isn’t off the charts, yes.

And on the topic of meds, do we expect them to continue rolling out at the same pace as they have over the past 20 or so years? What’s coming down the pipeline for us?

And as to progression to AS or fusion. That doesn’t happen to everyone, right? And only a minority of people with AS actually fuse their whole spines, right?

Thanks all - hoping to gather hope for anyone else in a sad, scared sack right now!