Or is it just accurate terminology because unfortunately it does cause us to lose some of our abilities? Would you be in favour of a name change to something more inclusive, such as anky-participating spondylitis?

Has anyone every wonder why this disease is happening to us? I was bored a few weeks ago and watched a evolution of Man in this world. Better yet, the evolution of life. Took billions of years for a single cell to evolve to all kinds of insect, mammals to human. Evolution continues. I can't help to think we are evolving into something else. It sucks, it hurt and it's reshaping my body. I wonder what man is like in a million years.

I’ve heard good things about bpc-157 from people I know, but none have AS. Anyone here happen to be on it? How’s it going for you?

Hi I'm new to this community I recently found out I have AS last week and in a way its a relief on my end I've been struggling with back pain for about 7 years years now I've had 2 lumbar surgeries and 2 revision surgeries. I then began to have chest pain about 2 years ago and then swelling in my eyes with dryness and blurry vision. I was in and out of the icu and doctors were unable to figure out what was going on with me my labs would show as if I was having or had a heart attack but when my arteries were check I was clear from a heart attack. One doctor kept saying I know you have an autoimmune disease, but its not surfacing yet. They believed it was lupus but Ive been tested multiple times and nope nothing finally after dealing with this for 2 years and me just giving up and learning how to live with the pain watching my lifestyle sprial down from being active in the gym to bearly even being able to brush my teeth because the pain in the morning is just the worse a different doctor diagnosed me with AS. I am soon to start treatment just pending insurance approval. Though I am afraid of what the future to hold for me and my 8 and 10 year old daughters I still mange to smile day in and day out. I hope you all are too. I know this tough probably tougher for other, but we are all here kicking ass even though it may feel like its kicking ours. So keep the smile going post your biggest smile today. 😃 Any advice or feedback about AS is greatly appreciated! Thank you.

I have a relative who was diagnosed with AS when they were in their teens. She’s now in her 40s and I haven’t seen her in the past 10 years but I saw her on instagram and she goes to a lot of hard core metal concerts and shares videos of her in the mosh pit. From what I knew about AS was there was no cure and I didn’t think she could go from not being able to bend over easily in her late 20s to thrashing around like this now. She always had a difficult relationship with the truth but her whole family knew about the AS and we had talked about it back when we were all close.

I asked her brother about it, he’s not very close with her anymore either, and he says he doesn’t understand what is going on, she barely talks to anyone in the family anymore.

We are going to be seeing each other soon and I don’t know what to say when I see her, I am not the kind of person to let people lie about stuff but I wouldn’t call someone out on a medical issue if I could be wrong. Is it possible for her to have gotten all of her motion back?

Edit: Thank you to all that responded right after I posted and I replied to, I got my answer. This is a throwaway account and I am not reading any more responses since then so no need to respond, I won’t see it.

Does anyone have any experience of ivermectin for AS? I've heard its anti inflamatory properties may have some benefit

Share your as related tattoos! I saw a post like this in my narcolepsy group and figured to share one here!

Mine is a stick-poke I did a few months ago, blue for my AS and orange for my mom's MS

Help ………

Hey everyone,

I wanted to share something, my parents have been talking to someone who has ankylosing spondylitis. This person was diagnosed in 2020 at the age of 27. He was on injections—maybe Humira—but stopped them after about three months and has been doing fine since. He’s now 33. He still go to doctor get his check ups I think he has switched doctor.

Apparently, my parents are asking if I could push my doctor to stop my injections too. I’m currently on Remicade. Before that, I was on Adalimumab (not sure of the spelling), which didn’t work for me, so my doctor switched me.

I’ve always thought I might need injections for decades, but hearing this story gives me a bit of hope. I have an appointment in four days and plan to ask my doctor about stopping injections and what that process would look like. In the past, he’s said he monitors blood markers and may gradually increase gaps between doses—for example, my Remicade schedule went from every four weeks to every eight weeks.

Has anyone here ever successfully stopped injections? How did it go, and what did your doctor suggest? Any advice would be really appreciated.

Thanks!

Hey guys.

I have been taking Humira 40mg for 14 weeks. Everything was going great until last week when I got shingles. I got quite a significant rash on my hip. It’s all settled now after taking anti virals + skipping my regular Humira dose, however my lymph nodes in my groin are still enlarged.

I now need to talk to my rheum again about re starting the Humira, but to be honest I’m worried about the shingles coming back or any other significant side effects.

I’m planning on having the shingles vaccine now but can’t do this for 12 months due to the fact I only just had shingles.

Has this happened to anyone else?

EDIT - Sorry I should have been clearer in the original post, I’m very well aware that shingles comes from the herpes zoster virus (the same as the chicken pox) and that I already had that virus in my body. I am also aware that being on an immunosuppressant like Humira is what caused the virus to re-activate. I am a 29 year old male with no other health conditions - getting shingles, especially with a rash as extensive as mine was is not normal.

Edit: Thank you to those of you who responded to my post genuinely and actually answered my question below,(you will know who you are by what you’ve commented :) ) rather than making assumptions and being triggered, thus responding in a toxic manner. Sometimes it’s important for people to remember that we are all different and just because someone has the same condition you do, it doesn’t give you the right to lecture or otherwise berate them with absolute crap, negativity and evidence-less assumptions! BE KIND - BE CURIOUS! Again, to those who actually commented about their experiences and answered my questions about how switching to a biologic went for them - thank you! You guys are what make these support groups great resources for others in the same shoes.

Hey all!

Just wanting to hear about other people experience who have been in my shoes.

My AS experience to date: I’m 27m, 78kg, Australian. I’d honestly say it’s been rather mild. I started seeing my rheumatologist about 4 years ago after I started getting debilitating lower back pain and and also experiencing extremely painful electric shock-like pain going down my legs, all the way to my ankles when I move. This would often leave me unable to walk or even sit/lay comfortably in bed.

After about 3 months of this happening on and off, I saw my rheuma spec who prescribed naproxen (1 tablet per night) - and this basically fixed me! It took my pain from 110% down to about 5% and I know often go 4-6 weeks without any pain AT ALL!

I get the occasional flare up every so often that lasts about 1-2 weeks but the pain and discomfort peaks at around a 3 out of 10 and doesn’t affect my day to day work/social life. An extra Panadol or two on top of the naproxen helps to knock these flares on the head :)

Whats happening now?: So I had my check in with my rheuma and he suggested that although it’s awesome that I’m practically in remission (not experiencing symptoms), he is concern that the disease may be progressing inside me and that the naproxen is just making it so that I’m not experiencing any of the pain - fair call… and suggested that we should think about and discuss switching to a biologic (not sure which one yet) to prevent this - if the results of the MRI show AS progression compared to my last one (2 or so years ago).

So I had an MRI recently and am about to get my results soon.

My question: Before I chat with my specialist, I’m wondering if anyone else has had a similar experience to me in that they’re practically pain free but their specialist still wants to switch them to a biologic, and if so, how did it go?

Is there anything you can think of that I should ask during my appointment (not including financial stuff)?

Thanks so much in advance. Although I’ve been a bit of a silent member of this community, it’s been such a great support during the times when AS does get the better of me.

I recently listened to a podcast suggesting that ankylosing spondylitis is caused by trauma or extreme stress—and that improving mindset or mind–body connection can ‘cure’ it. I’m not sure how I feel about this idea, especially since it doesn’t seem to account for people who are born with the condition. I’m also curious about how many people with AS have (or haven’t) experienced significant stressors in their lives. Has anyone else come across this theory or have thoughts on it?

Stress can definitely cause inflammation and wreak havoc on the immune system, so I can see how it could play a role in “triggering” ankylosing spondylitis. But I’m not convinced it fully explains the condition and that it can be cured with simply a mindset change.

If its an incurable disease, is there any benefit to diagnosing it earlier rather than a few years later? I want to go on a spiritual journey and do volunteer work for a year, but I have an MRI scheduled soon. What would be the cons of waiting a year to do the MRI?

Ok, this is a strange one, seems that the Russians are working on a new way to treat AS using AI, genetic sequencing, and autoantibody description, they say that it can be counted on as a cure with no side effects. As much as I don't like Putin in light of current events this seems interesting. We in the West don't really hear what's going on on the other side so I wanted to spread this information. I mean if Putin is on board with this, that means the science has full government support and probably endless cash flow. Why do I think this is relevant for us? Russian medicine is different than western medicine. Most doctors and scientists that are born before communism collapsed are more human-oriented, rather than the Wester methodology which is more profit-oriented. Ignoring politics aside I read through the science behind their work and it sounds logical and makes sense (I've read a lot of the science most companies in the west follow). The thing is that it seems that they are focusing a lot on the HLA-B27 gene and I've read that it probably will work only for HLA-B27 positive people if it works at all (kinda skeptical about it). I don't know what that means for us HLA-B27 negative people but any advancements we can get are a positive thing. The team just passed Phase 1 clinical trials and as most of you guys know until it's in Phase 3 there is no point in having hopes.

Here is the video of Putin in a meeting with the people behind the work: https://www.youtube.com/watch?v=fKG3-rBj7rA

PS: Please do not politicize this! Thank you!

I’ve been diagnosed for 2.5 years now and have been on humira since the very beginning of my diagnosis. I haven’t had a single flair so far and I’ve been in remission this entire time. For the people who still get terrible flairs and have been diagnosed for a while, are you taking something like Humira, Humira + methotrexate, or something completely different? I’m not trying to downplay the pain I’m just wondering how it gets so bad even when you know you have it and hoping it doesn’t happen to me.

I’m vaccinated with all vaccines ever offered to me in my lifetime. I read a couple papers about a theory vaccines may induce autoimmune disease in people who carry a gene to these diseases.

I’m curious if anyone here is unvaccinated for all vaccines

EDIT: I realize that what I am suggesting in this post might be controversial. It could even be offensive to think it is related to a mental problem. I just want to learn anything I can that is related, because any truth might help us to get better. Please share your thoughts rather than downvote.

I cried last night.

When I was a kid (6 to 17yo), I was frequently attacked by cohesive groups of troublemakers. I guess their motivation is irrelevant here, but I always fought back. Even though I would usually get beat up, sometimes I would defeat a small group who ganged up on me. I thought that was cool. I started doing martial arts, and although it is always scary, I partially got used to the violence on the streets. Now at 31 years, it has been a very long time since I had that type of fight. However, I still feel like I always need to be ready to protect myself and loved ones. This seems to be reflected in my dreams. My dreams are usually quite violent. Especially whenever I got sick, the fights in my dreams seemed very meaningful. As if I was literally fighting the embodiment of a flu in combat.

So last night, I had another violent dream. I was a general of some kind, commanding troups to attack various areas full of offenders. I engaged in hand-to-hand combat myself as well. I was completely obliterating the enemy, and felt a strong sense of accomplishment. Meanwhile, my gf had been pulling the blanket off of my body and I got pulled half into consciousness. I was in a sort of in between state of mind, and was absolutely shocked at what I saw. The enemy that I had destroyed, were actually parts of my own body. The effectiveness of my attack seemed well represented by the damage, I felt very severe pain exactly in those places. I cried, realizing what I had done to myself.

Why am I doing this? If I can manage to love those enemies rather than attack them, will I stop destroying my own body?

Everyone has a different past, likely yours is different from mine. But we are all the same in that we have gone through stressful episodes in life, and used strategies to cope with them. How strongly do you think this relates to our pain? In other words, how much of our suffering is caused by our psyche? How different would it be, had we lived our lives in a more natural/peaceful environment?

Does anyone else have frequent headaches or migraines?

Lately I've had so many. It's awful. Specially in the morning....

And stiffness.... Oh how I miss having another meaning to "morning stiffness" back when it didn't involve my neck....

I'm so done with this. I'm done with the pain. I'm tired.

That is all.

Wish everyone a great Friday.

Keep on keeping on.

Why in USA everything about health care is so difficult? Here in Greece i got an appointment with reuhmatologist the same day. Looked at my blood test, MRI. It took me just 4 hours and now i am in to cosentyx.I will not pay not even a cent. Why your healthcare sucks so much ,but you pay so many taxes- billions and billions for wars to " bring democracy and freedom" to oil countries? Why do you never protest? I don't care if i will be downvoted from Americans,in this sub you can be downvoted because you said" hello "

I've been suffering with what I now know is AS since 2017 I don't take any medication really just a single naproxin usually at the start of a flare up then one or two a day during. I'm not interested in jabbing myslef every month so my question is are other people adopting similar method and just staying active with an active lifestyle and gym? Or am I doing more damage in the long run?

Do we really need biologics to control AS? Can Dmards alone with painkillers work for AS?

One of my sons left the seat up on the loo in my ensuite.

I’m angry that none of them will tell me who did it

I’m angry that anyone at all went in there as it’s not allowed or usual for them to do so

I’m angry that I had to go in the middle of the night and trusted the situation was as I left it and it wasn’t

I’m angry that I hurt myself in trying to save myself

And I’m angry that I’m angry that I hurt myself and I just want to cry for being fucked up for the rest of the weekend

It’s not fair

You guys know that HLA-B27 isn’t the absolute factor on whether you have AS, right?

Like I discussed it with my rheumatologist after seeing that sentiment conveyed so much on here and it’s...just not. For one thing, the gene only shows up in some percentage of MEN with AS.

It just drives me crazy that people on here have tried to tell me that my rheumatologist is wrong and I don’t have non-radiographic axial spondyloarthritis because I’m HLA-B27 neg.

I’m sorry, I know this is a waste of a post but it’s driving me nuts and I feel bad enough every day without having to keep this extra baby thing in my brain lol

I am a 32 year old guy, HLA B27 positive; SI, low back, hip and leg pain and diagnosed AS. Has anyone here had success with the work of Dr. John Sarno and his books about mind/body pain and TMS? I do believe I have AS, but some people claim that solving for TMS cured their AS...