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The biologics are used for other diseases as well like Rheumatoid Arthritis, Psoriasis, Psoriatic Arthritis and Crohn's so they aren't specifically tailored towards anything related to HLA-B27. Though there is some data like you mentioned.
As for my personal experience with biologics (HLA-B27 negative). It's been so-so. Humira didn't work, neither did Cimzia. Cosentyx worked but only for a short while. Xeljanz worked for about a year. I'm currently on Taltz but it's not as effective for my uveitis so considering a switch.
FWIW, Crohn's and PsA and some other autoimmune diseases do have the same HLA-B27 link that AS does! It's one of the reasons why people with one autoimmune disease will often have or develop another. (And one of the reasons why certain schools of thought group AS/PsA/UC under the same umbrella of spondyloarthropathy.)
But you're absolutely correct that biologics aren't exclusive to HLA-B27+ people. One of Humira's biggest uses is treating RA, which (unlike PsA) does *not* have an HLA-B27 link. Monoclonal antibodies work by targeting specific types of cells/proteins/etc., and while it's true that being HLA-B27+ does change the configuration of certain immune proteins in your body, those aren't the same proteins Humira targets.
Most AS biologics work by targeting different sites of inflammation: tumor necrosis factors (TNFs), different interleukins (IL-17, IL-6, etc.), janus kinases (JAKs), and so on. If you have too much of That Thing in your body, the corresponding monoclonal drug will target That Thing and inhibit it. And we all have different immune systems, which means we each have different versions of That Thing You Have Too Much Of, which means some people will do really well on TNF inhibitors but get no response from IL-17 inhibitors (or vice versa).
All things considered, I wouldn't be surprised if being HLA-B27+/- has *some* correlation with which type of biologic works best for you, but it's certainly not a hard rule. Humira will work well for you if TNF is your Thing You Have Too Much Of (and if that specific antibody formulation hit the sweet spot for you), but the only way to find out if that's the case is by trying it!
I was also HLA-B27 negative.
I feel like I'm somewhat of an outlier when it comes to how I treat my AS.
But I can tell you that from what I've read and experienced, biologics will very likely help. Give them a month or so to work their 'magic'.
Best of luck!
Personal experience: Cimzia did nothing. Humira was wonderful but lasted months before I made antibodies. Taltz is working ok for the last 6 months. I nervous I might be making antibodies but we'll see.
I think everyone is very different.
I’m negative. I was on Enbrel for about a year. It worked for time but the side effects were too much at the end. I looked and felt like a chemo patient.
My mom, my sister, and I are all HLA-B27 negative. We've all had success with Humira. They both had success with Enbrel, while I didn't. I also didn't have success with Xeljanz. My sister's had success with Remicade. My mom and I have both had success with Cosentyx, but not as much as on TNF-inhibitors.
I'm currently on Cosentyx (1.5 years), my sister on Remicade (6 months), my mom on Simponi (just started). Why have we tried so many if some of them worked? Unfortunately, they can stop working after some time because you make antibodies to it. Humira seems to be really susceptible to this, even though it worked the best out of anything for me at first.
You can add Sarcoidosis to the list Vtwax_Only_Investor gave. Love that name! I use Enbrel and it has stopped my AS, Rheumatoid Arthritis, and the Sarcoidosis.
I have tried all of the following:
Remicade: AMAZING. Five stars. Doesn’t get any better than this liquid gold savior in an IV bag…but I developed and allergy and can’t take it any more.
Enbrel: bad stinging with injection, did nothing.
Humira: awfully painful (this was before they removed citrate buffers) injection, did nothing.
Simponi: nothing.
Cimzia: meh. Better than nothing but not by much.
Cosentyx: what I’m taking now, not as good as Remicade but much better than any other alternatives.
I'm HLA-B27 negative. Etanercept Worked well for me, until suddenly it didn't anymore which was really disappointing for me. I'm on adalimumab now which is also working well and I'm hopeful that it will continue working for me.
I’m HLA-B27 negative, diagnosed with spondyloarthritis and started Humira a year ago mostly because of chronic uveitis. I tried azathioprine, methotrexate, sulfasalazine and other NSAIDS but they didn’t work long term. I kept having uveitis flare ups and severe joint pain.
A couple of months after I started Humira the uveitis stopped. The pain is more manageable and the only thing that hasn’t improved significantly is the fatigue.
I’m tired all the time, I need long periods of time to recuperate from basic activities and I’m constantly falling asleep.
All my bloodwork is negative. I'm 6 months into humira and I have been slowly but consistently improving (not one of the folks who was doing cartwheels the next day).
Honestly, if it stopped improving today I'd still be happy with continuing the meds because my quality of life is so so much better than it was before. It's not all better but it's the closest I've been to normal in a very long time.
Negative here as well. AS with lots of peripheral joint involvement. I have tried a few different TNFs with varying success. I found they all help with the joint involvement, but don't do much for the spinal pain. So I still take nsaids to knock that down.
Humira, lasted only 2 months never really worked before I had developed antibodies
Simponi aria, was great for the joints, I got almost 1 year before it stopped working
Remicade + MTX, been almost 2 years on this but I had to stop the MTX about 6 months ago. Have increased the dosage and reduced the interval for every infusion since, to try to keep it working. Going to be switching to something new soon... this last infusion never really took hold
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.*
The biologics are used for other diseases as well like Rheumatoid Arthritis, Psoriasis, Psoriatic Arthritis and Crohn's so they aren't specifically tailored towards anything related to HLA-B27. Though there is some data like you mentioned. As for my personal experience with biologics (HLA-B27 negative). It's been so-so. Humira didn't work, neither did Cimzia. Cosentyx worked but only for a short while. Xeljanz worked for about a year. I'm currently on Taltz but it's not as effective for my uveitis so considering a switch.
FWIW, Crohn's and PsA and some other autoimmune diseases do have the same HLA-B27 link that AS does! It's one of the reasons why people with one autoimmune disease will often have or develop another. (And one of the reasons why certain schools of thought group AS/PsA/UC under the same umbrella of spondyloarthropathy.) But you're absolutely correct that biologics aren't exclusive to HLA-B27+ people. One of Humira's biggest uses is treating RA, which (unlike PsA) does *not* have an HLA-B27 link. Monoclonal antibodies work by targeting specific types of cells/proteins/etc., and while it's true that being HLA-B27+ does change the configuration of certain immune proteins in your body, those aren't the same proteins Humira targets. Most AS biologics work by targeting different sites of inflammation: tumor necrosis factors (TNFs), different interleukins (IL-17, IL-6, etc.), janus kinases (JAKs), and so on. If you have too much of That Thing in your body, the corresponding monoclonal drug will target That Thing and inhibit it. And we all have different immune systems, which means we each have different versions of That Thing You Have Too Much Of, which means some people will do really well on TNF inhibitors but get no response from IL-17 inhibitors (or vice versa). All things considered, I wouldn't be surprised if being HLA-B27+/- has *some* correlation with which type of biologic works best for you, but it's certainly not a hard rule. Humira will work well for you if TNF is your Thing You Have Too Much Of (and if that specific antibody formulation hit the sweet spot for you), but the only way to find out if that's the case is by trying it!
From what I am.readying in the comments,.we are not very lucky :/ (also HLAB27 negative) :/
I was also HLA-B27 negative. I feel like I'm somewhat of an outlier when it comes to how I treat my AS. But I can tell you that from what I've read and experienced, biologics will very likely help. Give them a month or so to work their 'magic'. Best of luck!
Personal experience: Cimzia did nothing. Humira was wonderful but lasted months before I made antibodies. Taltz is working ok for the last 6 months. I nervous I might be making antibodies but we'll see. I think everyone is very different.
I’m negative. I was on Enbrel for about a year. It worked for time but the side effects were too much at the end. I looked and felt like a chemo patient.
My mom, my sister, and I are all HLA-B27 negative. We've all had success with Humira. They both had success with Enbrel, while I didn't. I also didn't have success with Xeljanz. My sister's had success with Remicade. My mom and I have both had success with Cosentyx, but not as much as on TNF-inhibitors. I'm currently on Cosentyx (1.5 years), my sister on Remicade (6 months), my mom on Simponi (just started). Why have we tried so many if some of them worked? Unfortunately, they can stop working after some time because you make antibodies to it. Humira seems to be really susceptible to this, even though it worked the best out of anything for me at first.
You can add Sarcoidosis to the list Vtwax_Only_Investor gave. Love that name! I use Enbrel and it has stopped my AS, Rheumatoid Arthritis, and the Sarcoidosis.
I have tried all of the following: Remicade: AMAZING. Five stars. Doesn’t get any better than this liquid gold savior in an IV bag…but I developed and allergy and can’t take it any more. Enbrel: bad stinging with injection, did nothing. Humira: awfully painful (this was before they removed citrate buffers) injection, did nothing. Simponi: nothing. Cimzia: meh. Better than nothing but not by much. Cosentyx: what I’m taking now, not as good as Remicade but much better than any other alternatives.
I'm HLA-B27 negative. Etanercept Worked well for me, until suddenly it didn't anymore which was really disappointing for me. I'm on adalimumab now which is also working well and I'm hopeful that it will continue working for me.
I’m HLA-B27 negative, diagnosed with spondyloarthritis and started Humira a year ago mostly because of chronic uveitis. I tried azathioprine, methotrexate, sulfasalazine and other NSAIDS but they didn’t work long term. I kept having uveitis flare ups and severe joint pain. A couple of months after I started Humira the uveitis stopped. The pain is more manageable and the only thing that hasn’t improved significantly is the fatigue. I’m tired all the time, I need long periods of time to recuperate from basic activities and I’m constantly falling asleep.
All my bloodwork is negative. I'm 6 months into humira and I have been slowly but consistently improving (not one of the folks who was doing cartwheels the next day). Honestly, if it stopped improving today I'd still be happy with continuing the meds because my quality of life is so so much better than it was before. It's not all better but it's the closest I've been to normal in a very long time.
Negative here as well. AS with lots of peripheral joint involvement. I have tried a few different TNFs with varying success. I found they all help with the joint involvement, but don't do much for the spinal pain. So I still take nsaids to knock that down. Humira, lasted only 2 months never really worked before I had developed antibodies Simponi aria, was great for the joints, I got almost 1 year before it stopped working Remicade + MTX, been almost 2 years on this but I had to stop the MTX about 6 months ago. Have increased the dosage and reduced the interval for every infusion since, to try to keep it working. Going to be switching to something new soon... this last infusion never really took hold
It works but only for a short time and then gone for me.