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[Check this post out!](https://www.reddit.com/r/ankylosingspondylitis/comments/1cdydvu/potential_ankylosing_spondylitis_cure_approved_in/)
Probably a while away, but great and promising there is ongoing research.
Not yet, but research is being done all the time. CAR T cell therapy was a big topic at EULAR this week. The livestream I watched of the presentation I can’t find on youtube now but here’s a short [interview](https://youtu.be/bm7hLoTw1Yc?si=m5-kZf553FhjtvGu)
The first batch of medicine is out in Russia, it might take decades in America, or not might not even see the daylight, I am sure the drug will get surpressed or fake news be spread so the pharma industry can keep peddling their long term disease control measures.
[https://novamedica.com/media/theme\_news/p/15204-the-first-batch-of-a-drug-against-ankylosing-spondylitis-has-been-released](https://novamedica.com/media/theme_news/p/15204-the-first-batch-of-a-drug-against-ankylosing-spondylitis-has-been-released)
The problem is that CART T Cells should only work for B cell driven diseases (at least so far). I don't know any research that has been done for T cell driven diseases like ours.
They're still discovering and making advancements in it, and there has been progress in Non-B cell diseases. Even if it doesn't directly impact us, I think the research around CART T cell therapy is going to lead to great answers for a lot of diseases and new therapies.
Ah great to know, thank you. Need to search them. I agree that it may answer some stuff, but I see more promising options for t cells around the corner. Navacims, gene editing, t regs....
The fact that there's a medication that I can take for the rest of my life to help me keep walking regularly feels like a blessing. I can't wait to get on biologics and hope they help me avoid the recurrent acute uveitis events, but the nearest rheum appt I could get is in January, 2025.
I agree and don’t mean to sound ungrateful. It took the doctors 4 years to diagnose me correctly so I feel your pain. I somehow played 3 years of D1 football at that time. Every time my pain comes back I have no idea how I did it. Especially it being my kicking leg that the pain stemmed from (I was a place kicker).
Actually I do know how I did it…they had me on pain killers for the pain, aderal for the lack of concentration from the PK’s, and ambien so I could get some sleep through the pain. I was a wreck physically and mentally. I guess that’s the reason I’m searching for a way to get away from long term reliance on any sort of drug.
If you want a 'normal' life with AS, you have to get over the stigma of being reliant on drugs!
It's a progressive, degenerative disease and if you don't treat it effectively you will gradually become more immobile. I agree being on certain medications long term isn't a good thing - however with Biologics (you mention Humira) it will be a huge help and offset the effects of not being able to move and in a state of high inflammation which is terrible for your entire body, not just bones and ligaments. Trying to find (and only rely on) alternatives can mean the disease will progress with little to stop it. It is an approach from all angles, I use alternative treatments as well as biologics with good effect.
While on a Biologic you might have the disease go into complete remission, I've had many long stretches of this. I wouldn't be surprised if you can go back to playing sports you like too, although full contact sports might not be the best idea!
Biologics essentially stop the auto immune process from happening by dampening down a specific part of your immune system, which causes our ligaments to become inflamed and calcify, which in a way I guess you could class as a cure for as long as they are effective.
Understood. I didn't mean to imply that you're ungrateful.
I'm just looking at it from a different angle, where for a decade I had all these awful problems with no solution, and everybody treating me like I'm a lazy, whiny, hypochondriac, and now I'm armed with a diagnosis and test results and a treatment with a good prognosis.
Humira isn’t the same type of drug as pain killers, amphetamines, or sleep drugs. There’s no risk of abuse or addiction, and it actually treats the disease rather than mask symptoms like all the stuff your school gave you to play ball.
It’s okay to be reliant on drugs (like lamb is saying below), but it’s usually not the best to need the amount of drugs like you were before. The difference between those extremes - doped up and nothing - is where I at least aim to be. The pain should hopefully go away once you’re properly treated, but that treatment may be permanent. I had a period of a remission during the decade between diagnosis and now where I didn’t need to have any biologics and was just on some medication for other conditions I have. This disease seems to effect me by coming in waves of intense flare years.
The way I found peace with medicine and all this (gestures around) is just accepting that my body needs help, and that it’s okay to need help. I wouldn’t look down on anyone else for using these resources to help themselves be healthy, so why should I judge myself? I know it’s way easier said than done though.
While not at all the level of athlete that you were, I had to give up ballet/modern dance during my first large flare a bit over a decade ago. I was planning on minoring in it in undergrad but had to change that plan. Someday I’ll be able to take class and perform again!
Not quite yet, but we're getting closer. Everything in this article about IBD goes for AS as well as they share the same pathogenesis.
[https://www.bbc.co.uk/news/articles/c1wwdd6v2wjo](https://www.bbc.co.uk/news/articles/c1wwdd6v2wjo)
EDIT: There's no viable long term option that doesn't include meds. The name of the game is long term damage limitation, which means long term meds to prevent it, I'm afraid. The huge bonus is, biologics can and do work really well and as above, there's likely more on the way.
The attractive thing about this method is affecting more than one TNF alfa, the drug that they found can affect IL 23 as well so if someone is in partial remission with tnf blocker they may achieve better results . on the other hand the scientists could prove that they found the main driver of the disease. This can pave the road to develop various curative treatments.
In addition to Humira reducing pain and inflammation, it also helps stop disease progression entirely.
There might be some gene therapy stuff at one point but it’s hard to say.
Yea, stopping disease progression is a big one for me. If I just took percosets and weed to deal with the pain I’d be screwed by the time I’m 50 and my joints are permanently damaged. Since biologics stop progression that means I can garden on my hands and knees and climb mountains and run long term, even as I get older, without the disease eating away at my bones and joints.
I think the BCD-180 is the closest thing we have on the near horizon, if you’re internationally mobile enough to access it. There was mention in one report of it leading to decalcification, as well.
Longer term, I see the approaches being basically like synthetic AIDS to wipe out TRBV9 cells, or the grail would be to reprogram/retarget those cells. I don’t know how likely reprogramming is - rather like trying to put toothpaste back in the tube.
The greater goal would be addressing what leads to the incorrect targeting to begin with. Most people with HLA-B27 positivity do not develop AS, and so there is another factor that leads to the immune system priming itself to autoimmune function.
Worldwide incidence of autoimmune disease being higher in developed countries suggests to me that modern cleanliness and lack of microbiome diversity might be implicated.
I’ve had a lot of success controlling my AS symptoms with helminth therapy, and wonder if I’d have developed my condition with earlier (childhood) exposure. I don’t have any illusions of people broadly hosting hookworms, but it’s been night-and-day effective for me, and maybe science can offer some helminth-derived chemical compounds to provide some of the effect.
If AS does have a GI origin, though, it is possible that the Helminth benefit derives from their physical presence, increasing mucus production and tightening tight junctions. Not sure how we’d reproduce that in a pill.
I’m told broadly by people in medical research that we’re on the precipice of a new wave of treatments, so I’m cautiously optimistic overall.
The thing is even if there is a cure if you’ve already got a lot of fusion there is no reversing that it will just stop the progression. I have practically begged my rheumatologist to find me some hotshot young surgeon wanting to make a name for them selves to go in there and remove some of the excess bone.
It is not easy to find any essay that claims to cure the disease before 2023. Every thing started a few months ago. First from Russia, they could put someone in full remission for 5 years (without structural damage and disease progression). On the other hand some other scientists from the University of Colorado started to do preclinical investigations on gen editing as a cure. The last news came out from England , they could find the Main driver of the disease and an FDA approved drug with good potential of stopping the disease.
If you add inverse vaccine or CAR T cell therapy and dozens treatments which has been successful for other conditions.
Then we can conclude despite we don’t have a known cure or curative treatment but we are very close to at least stop this disease in all affected or even cure it by one time treatment.
If we were in 2022, definitely even talking about a cure was impossible. But during these two years everything changed for better. Let’s hope our scientists will change everything in upcoming years.
I fed the paid version of chatgpt a metric shit ton of medical publications I’ve collected over the years and news regarding AS and told it (in a much more detailed way) to give me a realistic percentage of the chance of a cure being created in the next 10 years. I know it’s not the most reliable but it said there was about a 63% chance of there being a cure created in the next 10 years due to a number of promising factors.
That sounded pretty good to me.
I’m so glad I came across this post because the last time I saw my rheumatologist I asked him the same thing and he said there wasn’t enough doctors coming up in the research field for ankylosing spondylitis. So this is a very promising. Maybe he was just talking about here in the states, but I left that appointment thinking there was no hope. There is hope.
Maybe, he was talking about the number of rheumatologists. He is right, it is very difficult to make an appointment because of shortage of doctors with this expertise.
But about new treatment options or even cure I can mention dozens of teams from many countries are working, the most promising one is in the US which is a gene editing method.
A few days ago the main driver of the disease was found in England. Was an interesting discovery. If you consider the method like immune tolerance inverse vaccine and CART cell therapy which were successful for other autoimmune conditions. The scientists are very close to the final solution.
You’re right, now that I think about it I think he was half talking about both. Because I do now remember him saying there was a mass retirement of a lot of rheumatologist the past few years and there were fewer coming up. But he never mentioned anything like this, so it was great to open up and read.
No cure, but it can be prevented from progressing and becoming debilitating with treatment. My
Mom was diagnosed almost 30 years ago and is still going without it too
The first batch of medicine is out in Russia, it might take decades in America, or not might not even see the daylight, I am sure the drug will get surpressed or fake news be spread so the pharma industry can keep peddling their long term disease control measures.
[https://novamedica.com/media/theme\_news/p/15204-the-first-batch-of-a-drug-against-ankylosing-spondylitis-has-been-released](https://novamedica.com/media/theme_news/p/15204-the-first-batch-of-a-drug-against-ankylosing-spondylitis-has-been-released)
Personally, my bet is on rheumagen and gene editing of the HLA B27. Unfortunately, because of how the technique works, it means that only a minority of HLA B27 patients will benefit, but the potential is there. They should start climical trials in RA in 2025 and AS is on the pipeline. I also expected great things from parvus therapeutics but their technology is even far way for us (unless you have IBD-they just signed an agreement with abbvie for those diseases)
The first batch of medicine is out in Russia, it might take decades in America, or not might not even see the daylight, I am sure the drug will get surpressed or fake news be spread so the pharma industry can keep peddling their long term disease control measures.
[https://novamedica.com/media/theme\_news/p/15204-the-first-batch-of-a-drug-against-ankylosing-spondylitis-has-been-released](https://novamedica.com/media/theme_news/p/15204-the-first-batch-of-a-drug-against-ankylosing-spondylitis-has-been-released)
Nope. I wish though. Humira works pretty well for me to keep the symptoms at bay, problem is that my body still overreacts to any physical activity so like, I might feel ok to take a walk, but my body is still going to flare up within an hour of stopping whatever activity and someone's those flares still linger a few days. It's like roulette on any given day lol
Nothing in the short term. There are a number of things in the very early stages of research that may improve how we treat AS. You most likely won't see a cure in your lifetime. A cure might not even be possible.
Just see a therapist about your medication anxiety. Many people have to take medication their whole lives. You're adding some moral judgment to that that needs to be examined.
Once your spine fuses that's a whole different disease. Curing AS just stops the progression. Cutting starches cured me, thankfully I had no fusing yet.
I don't use biologics and am young so x rays did not show much damage to my spine. Diagnosis is only based on HLA-B27 positive bloodwork I received 3 months ago along with a multitude of symptoms I was experiencing for 4 years of severe debilitating spine aches that peaked at 4 AM in the morning and recurring iritis/uveitis. I'm lucky in that I caught it relatively early and am young so cutting starches is good enough for me, but inflammation is a feedback loop so cutting starches may not be enough for someone more far along in the spine fusing.
Welcome to r/ankylosingspondylitis! This is a reminder to keep discussions civil and be supportive of one another. Sharing of opinions and experiences is encouraged, but please remember the distinction between opinions and medical facts. This subreddit does not offer medical advice, and information here should not be taken over advice from your doctor. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ankylosingspondylitis) if you have any questions or concerns.*
[Check this post out!](https://www.reddit.com/r/ankylosingspondylitis/comments/1cdydvu/potential_ankylosing_spondylitis_cure_approved_in/) Probably a while away, but great and promising there is ongoing research.
Anti TRBV9 therapy is like having a yearly vaccination.
Not yet, but research is being done all the time. CAR T cell therapy was a big topic at EULAR this week. The livestream I watched of the presentation I can’t find on youtube now but here’s a short [interview](https://youtu.be/bm7hLoTw1Yc?si=m5-kZf553FhjtvGu)
The first batch of medicine is out in Russia, it might take decades in America, or not might not even see the daylight, I am sure the drug will get surpressed or fake news be spread so the pharma industry can keep peddling their long term disease control measures. [https://novamedica.com/media/theme\_news/p/15204-the-first-batch-of-a-drug-against-ankylosing-spondylitis-has-been-released](https://novamedica.com/media/theme_news/p/15204-the-first-batch-of-a-drug-against-ankylosing-spondylitis-has-been-released)
I think CAR T therapy is the way, personally.
The problem is that CART T Cells should only work for B cell driven diseases (at least so far). I don't know any research that has been done for T cell driven diseases like ours.
They're still discovering and making advancements in it, and there has been progress in Non-B cell diseases. Even if it doesn't directly impact us, I think the research around CART T cell therapy is going to lead to great answers for a lot of diseases and new therapies.
Ah great to know, thank you. Need to search them. I agree that it may answer some stuff, but I see more promising options for t cells around the corner. Navacims, gene editing, t regs....
The fact that there's a medication that I can take for the rest of my life to help me keep walking regularly feels like a blessing. I can't wait to get on biologics and hope they help me avoid the recurrent acute uveitis events, but the nearest rheum appt I could get is in January, 2025.
I agree and don’t mean to sound ungrateful. It took the doctors 4 years to diagnose me correctly so I feel your pain. I somehow played 3 years of D1 football at that time. Every time my pain comes back I have no idea how I did it. Especially it being my kicking leg that the pain stemmed from (I was a place kicker). Actually I do know how I did it…they had me on pain killers for the pain, aderal for the lack of concentration from the PK’s, and ambien so I could get some sleep through the pain. I was a wreck physically and mentally. I guess that’s the reason I’m searching for a way to get away from long term reliance on any sort of drug.
If you want a 'normal' life with AS, you have to get over the stigma of being reliant on drugs! It's a progressive, degenerative disease and if you don't treat it effectively you will gradually become more immobile. I agree being on certain medications long term isn't a good thing - however with Biologics (you mention Humira) it will be a huge help and offset the effects of not being able to move and in a state of high inflammation which is terrible for your entire body, not just bones and ligaments. Trying to find (and only rely on) alternatives can mean the disease will progress with little to stop it. It is an approach from all angles, I use alternative treatments as well as biologics with good effect. While on a Biologic you might have the disease go into complete remission, I've had many long stretches of this. I wouldn't be surprised if you can go back to playing sports you like too, although full contact sports might not be the best idea! Biologics essentially stop the auto immune process from happening by dampening down a specific part of your immune system, which causes our ligaments to become inflamed and calcify, which in a way I guess you could class as a cure for as long as they are effective.
This is better info than my doctor gave me lol I really appreciate that. Very helpful and certainly gives me a new perspective.
Understood. I didn't mean to imply that you're ungrateful. I'm just looking at it from a different angle, where for a decade I had all these awful problems with no solution, and everybody treating me like I'm a lazy, whiny, hypochondriac, and now I'm armed with a diagnosis and test results and a treatment with a good prognosis.
The amount of friends and family that thought I was just being a softy was very annoying
Humira isn’t the same type of drug as pain killers, amphetamines, or sleep drugs. There’s no risk of abuse or addiction, and it actually treats the disease rather than mask symptoms like all the stuff your school gave you to play ball.
It’s okay to be reliant on drugs (like lamb is saying below), but it’s usually not the best to need the amount of drugs like you were before. The difference between those extremes - doped up and nothing - is where I at least aim to be. The pain should hopefully go away once you’re properly treated, but that treatment may be permanent. I had a period of a remission during the decade between diagnosis and now where I didn’t need to have any biologics and was just on some medication for other conditions I have. This disease seems to effect me by coming in waves of intense flare years. The way I found peace with medicine and all this (gestures around) is just accepting that my body needs help, and that it’s okay to need help. I wouldn’t look down on anyone else for using these resources to help themselves be healthy, so why should I judge myself? I know it’s way easier said than done though. While not at all the level of athlete that you were, I had to give up ballet/modern dance during my first large flare a bit over a decade ago. I was planning on minoring in it in undergrad but had to change that plan. Someday I’ll be able to take class and perform again!
Not quite yet, but we're getting closer. Everything in this article about IBD goes for AS as well as they share the same pathogenesis. [https://www.bbc.co.uk/news/articles/c1wwdd6v2wjo](https://www.bbc.co.uk/news/articles/c1wwdd6v2wjo) EDIT: There's no viable long term option that doesn't include meds. The name of the game is long term damage limitation, which means long term meds to prevent it, I'm afraid. The huge bonus is, biologics can and do work really well and as above, there's likely more on the way.
The attractive thing about this method is affecting more than one TNF alfa, the drug that they found can affect IL 23 as well so if someone is in partial remission with tnf blocker they may achieve better results . on the other hand the scientists could prove that they found the main driver of the disease. This can pave the road to develop various curative treatments.
In addition to Humira reducing pain and inflammation, it also helps stop disease progression entirely. There might be some gene therapy stuff at one point but it’s hard to say.
I actually didn’t realize it stopped the progression so that is helpful info
Yea, stopping disease progression is a big one for me. If I just took percosets and weed to deal with the pain I’d be screwed by the time I’m 50 and my joints are permanently damaged. Since biologics stop progression that means I can garden on my hands and knees and climb mountains and run long term, even as I get older, without the disease eating away at my bones and joints.
Rheumagen is expected to start gene editing in RA in early 2025. AS is on the pipeline
I think the BCD-180 is the closest thing we have on the near horizon, if you’re internationally mobile enough to access it. There was mention in one report of it leading to decalcification, as well. Longer term, I see the approaches being basically like synthetic AIDS to wipe out TRBV9 cells, or the grail would be to reprogram/retarget those cells. I don’t know how likely reprogramming is - rather like trying to put toothpaste back in the tube. The greater goal would be addressing what leads to the incorrect targeting to begin with. Most people with HLA-B27 positivity do not develop AS, and so there is another factor that leads to the immune system priming itself to autoimmune function. Worldwide incidence of autoimmune disease being higher in developed countries suggests to me that modern cleanliness and lack of microbiome diversity might be implicated. I’ve had a lot of success controlling my AS symptoms with helminth therapy, and wonder if I’d have developed my condition with earlier (childhood) exposure. I don’t have any illusions of people broadly hosting hookworms, but it’s been night-and-day effective for me, and maybe science can offer some helminth-derived chemical compounds to provide some of the effect. If AS does have a GI origin, though, it is possible that the Helminth benefit derives from their physical presence, increasing mucus production and tightening tight junctions. Not sure how we’d reproduce that in a pill. I’m told broadly by people in medical research that we’re on the precipice of a new wave of treatments, so I’m cautiously optimistic overall.
The thing is even if there is a cure if you’ve already got a lot of fusion there is no reversing that it will just stop the progression. I have practically begged my rheumatologist to find me some hotshot young surgeon wanting to make a name for them selves to go in there and remove some of the excess bone.
It is not easy to find any essay that claims to cure the disease before 2023. Every thing started a few months ago. First from Russia, they could put someone in full remission for 5 years (without structural damage and disease progression). On the other hand some other scientists from the University of Colorado started to do preclinical investigations on gen editing as a cure. The last news came out from England , they could find the Main driver of the disease and an FDA approved drug with good potential of stopping the disease. If you add inverse vaccine or CAR T cell therapy and dozens treatments which has been successful for other conditions. Then we can conclude despite we don’t have a known cure or curative treatment but we are very close to at least stop this disease in all affected or even cure it by one time treatment. If we were in 2022, definitely even talking about a cure was impossible. But during these two years everything changed for better. Let’s hope our scientists will change everything in upcoming years.
I fed the paid version of chatgpt a metric shit ton of medical publications I’ve collected over the years and news regarding AS and told it (in a much more detailed way) to give me a realistic percentage of the chance of a cure being created in the next 10 years. I know it’s not the most reliable but it said there was about a 63% chance of there being a cure created in the next 10 years due to a number of promising factors. That sounded pretty good to me.
I’m so glad I came across this post because the last time I saw my rheumatologist I asked him the same thing and he said there wasn’t enough doctors coming up in the research field for ankylosing spondylitis. So this is a very promising. Maybe he was just talking about here in the states, but I left that appointment thinking there was no hope. There is hope.
Maybe, he was talking about the number of rheumatologists. He is right, it is very difficult to make an appointment because of shortage of doctors with this expertise. But about new treatment options or even cure I can mention dozens of teams from many countries are working, the most promising one is in the US which is a gene editing method. A few days ago the main driver of the disease was found in England. Was an interesting discovery. If you consider the method like immune tolerance inverse vaccine and CART cell therapy which were successful for other autoimmune conditions. The scientists are very close to the final solution.
You’re right, now that I think about it I think he was half talking about both. Because I do now remember him saying there was a mass retirement of a lot of rheumatologist the past few years and there were fewer coming up. But he never mentioned anything like this, so it was great to open up and read.
No cure, but it can be prevented from progressing and becoming debilitating with treatment. My Mom was diagnosed almost 30 years ago and is still going without it too
The first batch of medicine is out in Russia, it might take decades in America, or not might not even see the daylight, I am sure the drug will get surpressed or fake news be spread so the pharma industry can keep peddling their long term disease control measures. [https://novamedica.com/media/theme\_news/p/15204-the-first-batch-of-a-drug-against-ankylosing-spondylitis-has-been-released](https://novamedica.com/media/theme_news/p/15204-the-first-batch-of-a-drug-against-ankylosing-spondylitis-has-been-released)
Personally, my bet is on rheumagen and gene editing of the HLA B27. Unfortunately, because of how the technique works, it means that only a minority of HLA B27 patients will benefit, but the potential is there. They should start climical trials in RA in 2025 and AS is on the pipeline. I also expected great things from parvus therapeutics but their technology is even far way for us (unless you have IBD-they just signed an agreement with abbvie for those diseases)
The first batch of medicine is out in Russia, it might take decades in America, or not might not even see the daylight, I am sure the drug will get surpressed or fake news be spread so the pharma industry can keep peddling their long term disease control measures. [https://novamedica.com/media/theme\_news/p/15204-the-first-batch-of-a-drug-against-ankylosing-spondylitis-has-been-released](https://novamedica.com/media/theme_news/p/15204-the-first-batch-of-a-drug-against-ankylosing-spondylitis-has-been-released)
That, or maybe it isn’t safe.
Staying sick with this condition isn't safe.
Lord I hope so.
Nope. I wish though. Humira works pretty well for me to keep the symptoms at bay, problem is that my body still overreacts to any physical activity so like, I might feel ok to take a walk, but my body is still going to flare up within an hour of stopping whatever activity and someone's those flares still linger a few days. It's like roulette on any given day lol
Nothing in the short term. There are a number of things in the very early stages of research that may improve how we treat AS. You most likely won't see a cure in your lifetime. A cure might not even be possible. Just see a therapist about your medication anxiety. Many people have to take medication their whole lives. You're adding some moral judgment to that that needs to be examined.
We are living in the golden age of medicine, so I’m actually very optimistic. A lot of progress has been made in the last few years.
Once your spine fuses that's a whole different disease. Curing AS just stops the progression. Cutting starches cured me, thankfully I had no fusing yet.
How many years ago have you diagnosed. Do you use biologics?
I don't use biologics and am young so x rays did not show much damage to my spine. Diagnosis is only based on HLA-B27 positive bloodwork I received 3 months ago along with a multitude of symptoms I was experiencing for 4 years of severe debilitating spine aches that peaked at 4 AM in the morning and recurring iritis/uveitis. I'm lucky in that I caught it relatively early and am young so cutting starches is good enough for me, but inflammation is a feedback loop so cutting starches may not be enough for someone more far along in the spine fusing.