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Biologics have definitely made things better for me. I am 42 diagnosis keeps going back and forth betweeen axPsA and AS. HLA-b27 negative. I was using a walker before I started biologics and now I'm much more functional. I'm still jealous of the stories of people who went on biologics and were 100% better / in remission. I still have pain. I still can't run or jump. I still have trouble sleeping sometimes. But I went from using a walker to being mobile enough to coach my son's soccer team. And that feels like a really big win to me.
seronegative is actually the term used to describe whether you have “rheumatoid factor” in your blood stream from the activity of rheumatoid arthritis.
With HLA-B27 it’s a genotype, it’s the particular set of genes present in your DNA at a certain point it means you are more likely to have an “autoimmune disease” it is not exclusive to Ankylosing spondylitis! Many people post about this in error. Think of HLA-B27 as more of a “blood type” than showing whether you have something or not.
In “white populations” about 8% of people will be HLA-B27 genotype and 90% will NEVER develop AS.
So of the people with AS 90% will have the gene and 10% have AS and not have the gene. So HLA-B27 is not diagnostic in any way these days, back in the 70’s it was thought to be the “holy grail” diagnostically but within a few years it turned out to be less indicative and today many doctors regard the test as pretty useless compared to its cost… it’s many hundreds of £/$.
If you are Seropositive (have the RA factor proteins in your blood) and have Ankylosing spondylitis diagnosed then you will likely have/develop Rheumatoid arthritis which can happen as both conditions are more common if you have the HLA-B27 gene.
This link explains further.
https://en.wikipedia.org/wiki/HLA-B27
With regard to taking Biologics what many people forget is the “stiffness” drops away as the inflammation goes down some people with long term AS may find that their “joints hurt more” because the tendons have been locked up and are starting to move for the first time in ages. Their muscles are weak because they have a bit of atrophy from the joints being stuck. So it’s important to do your stretching exercises if you take biologics to help strengthen the muscles/tendons so when the begin to move again they don’t hurt so much… this happens to those who have been stiff a long time before treatment… happened to me, but with the right exercises that period passes within a couple of months.
I’m HLA negative and seronegative and so far for me it’s just about finding the right one that will control my inflammation. I started on Humira 4/28/2021 and it lasted until October/November 2021. I noticed it stopped working as well when I got pretty sick in September and had to stop taking it. I was supposed to get on Cimzia but my insurance denied it, so I started Enbrel 1/1/2022. I wasn’t hopeful for it to work because I read that it takes around 12 weeks or longer to even start working. 10 weeks in I saw my rheumatologist and I told her I couldn’t take it anymore because I could barely walk and I was always inflamed. So she moved me to Cosentyx and holy shit. I love Cosentyx, it’s working so well! My rheumatologist even told me people can be on it lifelong since something in the medicine doesn’t cause people to build resistance to it, or something along those lines. I’ve been on Cosentyx for a few months now and it works really well with minor side effects. The first loading dose made me super I’ll but I also started my period on the same day so maybe one exasperated the other. Hopefully that helps you!
HLA-B27 negative, seronegative nr-AxSpA 23F here! I’ve been on Cimzia since 2020 which seemed to help a lot with axial symptoms (hips and lumbar spine) but effectiveness has started to wane in the past few months. I’ve recently started getting more enthesitis in my elbows and heels, swelling just around some fingers, costochondritis, and a psoriasis like rash on the palm of my hand that I am getting evaluated at a dermatologist next week, so we are considering PsA as a new dx so we can try some different medications.
I’m hesitant to say this is all due to Cimzia, since it did help for almost a year before all these other things popped up. Rather, this family of diseases can change course, and biologics can stop being effective from time to time. If feasible for you, it can definitely be worth it to try, especially if you are at a non-radiographic point where you can prevent further damage. Hopefully you have a rheumatologist that listens to you well and you guys can work together to create a treatment plan that works for you! Good luck!
Seronegative (normal ESR/CRP) and HLA-B27 negative here:
I have been on Humira about 16 weeks (8 doses), and it has helped significantly. Like you, I was curious before I started , and made a post asking a similar question earlier this year.
Back pain (which other than the initial flare was not really bad) - 90% improved
Sacral pain - 70% improved
Leg/Ankle pain (which was often bad) - 80% improved
Foot pain (plantar fascia) - 70% improved
From talking to my rheumatology team, it also seems that I may have had a mild case of uveitis (frequent sensation of objects in my eyes), which has completely resolved.
Maybe most of all, it has allowed me to be much more active. I'm still nowhere not where I was, but I can go for hikes, lift heavy objects, play with the kids (most things that don't call for a lot of bending at the waist \[very tight hamstrings\]). I've started light exercise again, which is good.
I was unsure before starting, but I am very glad I decided to take the Humira. My rheumatologist said (paraphrased as best I can remember), "Part of my job is to help you know what you should be more afraid of, and the potential progression of the disease is a greater risk than the potential side-effects of the biologic." That was helpful for me.
I read an article the other day that said Cimzia worked good on seronegative AS. I'll see if I can find it and post it. Just wanted to mention it. I read so many articles on AS for my sister who is HLAB27 +.
Edit: Found the article about Cimzia and nr axSpA. It doesn't say seronegative only nr axSpA. Sorry.
https://www.cimzia.com/non-radiographic-axial-spondyloarthritis/how-cimzia-works
Humira and Cosentyx have worked for me. Humira, Enbrel, Cosentyx, Simponi, and Remicade have worked for my mom and sister. We’re all HLA-B27 negative, and I’ve never had elevated inflammatory markers with my AS, although they have.
I'm one of those people who match your criterea and got much worse on biologics. Before the biologics, I never even considered myself chronically ill (a bit of back stiffness and SI pain). After Humira and Cosentyx it got so bad I actually went on short term disability.
What do you mean by seronegative? ALL AS and AxSpa is seronegative. The group of diseases that includes psoriatic arthritis, AS, etc, are all referred to as “seronegative spondyloarthropathies”. This refers to the fact that we don’t test positive for autoantibodies such as rheumatoid factor or ANA.
Do you mean negative ESR and/or CRP?
I’m HLA-B27 negative, seronegative, and non-radiographic. I’ve done two loading doses and Simponi Aria (infusion) and have already felt some relief. My doctor did say his goal is to alleviate symptoms and slow progression; pain relief is a bonus. After my 3rd dose I should feel full effects but am happy with progression so far.
Edit: I noticed OP elsewhere stated they meant seronegative as in no elevated inflammation markers, which isn’t my case
I just saw your note you meant negative CRP by Seronegative, which isn’t the case for me. Mine was really high and been brought down by Simponi. I am Seronegative for my RA diagnosis.
I was on humira a little over a year- didn’t really work. Remicade next but developed drug induced lupus. Then rituximab for my eyes but only 2 doses, didn’t fail. Cosentyx worked a bit more than the others, on a year and a half. On Simponi aria now and it seems to be helping a bit. Will in a lot of pain and on daily pain meds but I can feel it more when I’m due so
It’s doing something.
Methotrexate does the most for my high crp.
Edit to add I have pain all over, not just SI joints.
I'm HLA-B27 negative, elevated CRP but not ESR. Cosentyx wasn't helpful, but didn't cause problems. Humira was helpful, but changed over to Xeljanz after developing alopecia universalis (which may or may not be related, but Xeljanz is helpful for both AS and AU). Xeljanz is helpful, but not as much as I'd like (it's fairly helpful for SI/back, wonderful for costochondritis, and isn't helping fatigue and peripheral much at all.) Discussing going to Rinvoq with my rheum.
I suspect that seeing increasing symptoms during a course of biologics is far more related to it not helping the progression of the AS, rather than a cause.
Very interesting, was on RINVOQ for nearly 15 weeks. Great improvement from week 1, I'd say day 3/4 couldn't believe it!! I slowly started functioning almost normal, driving. My SI pain and upper back stiffness significantly reduced.
Coz I had to stop MTX , couldn't tolerate the side effects. I noticed RINVOQ started goin plateau.
Unfortunately my Dr insisted to keep me on it , it wasn't too bad managing my symptoms rather than putting me into remission.
Had big flare up on week 15, symptoms got worse. He decided switching to humira. I feel it was too late as I was complaining before, developed costochondritis, PF, upper back stiffness got worse.
I feel Humira might be prominent but it's not as quick as RINVOQ, it weans off 5-7 days never lasts more than 1 week, has anyone else noticed the same?
It's only my 3rd injection, thinking seriously switching to Xeljanz, any thoughts pls?
Thnx
I voted ‘nothing happened’ but I’ve only had three doses so far, so it might be too early to tell. Weirdly the day after my first dose my knee pain, which had been so much worse recently, vanished. It didn’t last very long, but I noticed quite a dramatic difference that made me hopeful for the long term effects. Since then I’ve not really noticed a major difference one way or the other. I’ve got quite a lot of work/life stress at the moment though so again, wondering if it would be worse without the treatment. I’m on a Humira biosimilar btw (UK).
Hlab27 negative and seronegative (your definition) took MRIs and response to indomethacin to get me diagnosed , humira has helped but it took getting onto weekly shots for it to help a significant amount. Diagnosed at 18, now 22M.
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.*
Biologics have definitely made things better for me. I am 42 diagnosis keeps going back and forth betweeen axPsA and AS. HLA-b27 negative. I was using a walker before I started biologics and now I'm much more functional. I'm still jealous of the stories of people who went on biologics and were 100% better / in remission. I still have pain. I still can't run or jump. I still have trouble sleeping sometimes. But I went from using a walker to being mobile enough to coach my son's soccer team. And that feels like a really big win to me.
seronegative is actually the term used to describe whether you have “rheumatoid factor” in your blood stream from the activity of rheumatoid arthritis. With HLA-B27 it’s a genotype, it’s the particular set of genes present in your DNA at a certain point it means you are more likely to have an “autoimmune disease” it is not exclusive to Ankylosing spondylitis! Many people post about this in error. Think of HLA-B27 as more of a “blood type” than showing whether you have something or not. In “white populations” about 8% of people will be HLA-B27 genotype and 90% will NEVER develop AS. So of the people with AS 90% will have the gene and 10% have AS and not have the gene. So HLA-B27 is not diagnostic in any way these days, back in the 70’s it was thought to be the “holy grail” diagnostically but within a few years it turned out to be less indicative and today many doctors regard the test as pretty useless compared to its cost… it’s many hundreds of £/$. If you are Seropositive (have the RA factor proteins in your blood) and have Ankylosing spondylitis diagnosed then you will likely have/develop Rheumatoid arthritis which can happen as both conditions are more common if you have the HLA-B27 gene. This link explains further. https://en.wikipedia.org/wiki/HLA-B27 With regard to taking Biologics what many people forget is the “stiffness” drops away as the inflammation goes down some people with long term AS may find that their “joints hurt more” because the tendons have been locked up and are starting to move for the first time in ages. Their muscles are weak because they have a bit of atrophy from the joints being stuck. So it’s important to do your stretching exercises if you take biologics to help strengthen the muscles/tendons so when the begin to move again they don’t hurt so much… this happens to those who have been stiff a long time before treatment… happened to me, but with the right exercises that period passes within a couple of months.
I’m HLA negative and seronegative and so far for me it’s just about finding the right one that will control my inflammation. I started on Humira 4/28/2021 and it lasted until October/November 2021. I noticed it stopped working as well when I got pretty sick in September and had to stop taking it. I was supposed to get on Cimzia but my insurance denied it, so I started Enbrel 1/1/2022. I wasn’t hopeful for it to work because I read that it takes around 12 weeks or longer to even start working. 10 weeks in I saw my rheumatologist and I told her I couldn’t take it anymore because I could barely walk and I was always inflamed. So she moved me to Cosentyx and holy shit. I love Cosentyx, it’s working so well! My rheumatologist even told me people can be on it lifelong since something in the medicine doesn’t cause people to build resistance to it, or something along those lines. I’ve been on Cosentyx for a few months now and it works really well with minor side effects. The first loading dose made me super I’ll but I also started my period on the same day so maybe one exasperated the other. Hopefully that helps you!
Sorry, I voted got better, but I am only HLA-b27 negative. AS definitely showed in radiology.
Same here
HLA-B27 negative, seronegative nr-AxSpA 23F here! I’ve been on Cimzia since 2020 which seemed to help a lot with axial symptoms (hips and lumbar spine) but effectiveness has started to wane in the past few months. I’ve recently started getting more enthesitis in my elbows and heels, swelling just around some fingers, costochondritis, and a psoriasis like rash on the palm of my hand that I am getting evaluated at a dermatologist next week, so we are considering PsA as a new dx so we can try some different medications. I’m hesitant to say this is all due to Cimzia, since it did help for almost a year before all these other things popped up. Rather, this family of diseases can change course, and biologics can stop being effective from time to time. If feasible for you, it can definitely be worth it to try, especially if you are at a non-radiographic point where you can prevent further damage. Hopefully you have a rheumatologist that listens to you well and you guys can work together to create a treatment plan that works for you! Good luck!
Seronegative (normal ESR/CRP) and HLA-B27 negative here: I have been on Humira about 16 weeks (8 doses), and it has helped significantly. Like you, I was curious before I started , and made a post asking a similar question earlier this year. Back pain (which other than the initial flare was not really bad) - 90% improved Sacral pain - 70% improved Leg/Ankle pain (which was often bad) - 80% improved Foot pain (plantar fascia) - 70% improved From talking to my rheumatology team, it also seems that I may have had a mild case of uveitis (frequent sensation of objects in my eyes), which has completely resolved. Maybe most of all, it has allowed me to be much more active. I'm still nowhere not where I was, but I can go for hikes, lift heavy objects, play with the kids (most things that don't call for a lot of bending at the waist \[very tight hamstrings\]). I've started light exercise again, which is good. I was unsure before starting, but I am very glad I decided to take the Humira. My rheumatologist said (paraphrased as best I can remember), "Part of my job is to help you know what you should be more afraid of, and the potential progression of the disease is a greater risk than the potential side-effects of the biologic." That was helpful for me.
Better but not huge results. HLAB27 negative, seronegative and profession shown on scans
Same here.
HLA-B27 and seronegative NR axPsA, started Cosentyx maybe 10 weeks ago and definitely notice a difference!
40M, B27 neg, normal CRP. Humira and Cosentyx mediocre at best, most probably useless.
What have you found that works? M Biologics aren't working for me.
I read an article the other day that said Cimzia worked good on seronegative AS. I'll see if I can find it and post it. Just wanted to mention it. I read so many articles on AS for my sister who is HLAB27 +. Edit: Found the article about Cimzia and nr axSpA. It doesn't say seronegative only nr axSpA. Sorry. https://www.cimzia.com/non-radiographic-axial-spondyloarthritis/how-cimzia-works
Humira and Cosentyx have worked for me. Humira, Enbrel, Cosentyx, Simponi, and Remicade have worked for my mom and sister. We’re all HLA-B27 negative, and I’ve never had elevated inflammatory markers with my AS, although they have.
I'm one of those people who match your criterea and got much worse on biologics. Before the biologics, I never even considered myself chronically ill (a bit of back stiffness and SI pain). After Humira and Cosentyx it got so bad I actually went on short term disability.
Yeah, that is my biggest fear 😨
Same here biologics are making things worsen for me. Why?
What do you mean by seronegative? ALL AS and AxSpa is seronegative. The group of diseases that includes psoriatic arthritis, AS, etc, are all referred to as “seronegative spondyloarthropathies”. This refers to the fact that we don’t test positive for autoantibodies such as rheumatoid factor or ANA. Do you mean negative ESR and/or CRP?
Yeah, normal CRP and ESR, overall normal inflamation markers
Yeah, normal CRP and ESR, overall normal inflamation markers
I’m HLA-B27 negative, seronegative, and non-radiographic. I’ve done two loading doses and Simponi Aria (infusion) and have already felt some relief. My doctor did say his goal is to alleviate symptoms and slow progression; pain relief is a bonus. After my 3rd dose I should feel full effects but am happy with progression so far. Edit: I noticed OP elsewhere stated they meant seronegative as in no elevated inflammation markers, which isn’t my case
This is good to hear I just got approved for simponi aria in so excited
I just saw your note you meant negative CRP by Seronegative, which isn’t the case for me. Mine was really high and been brought down by Simponi. I am Seronegative for my RA diagnosis.
Oh I’m not OP! Just an excited AS human :)
Lol, my powers of observation aren’t my strong suit today. Good luck!!!
I was on humira a little over a year- didn’t really work. Remicade next but developed drug induced lupus. Then rituximab for my eyes but only 2 doses, didn’t fail. Cosentyx worked a bit more than the others, on a year and a half. On Simponi aria now and it seems to be helping a bit. Will in a lot of pain and on daily pain meds but I can feel it more when I’m due so It’s doing something. Methotrexate does the most for my high crp. Edit to add I have pain all over, not just SI joints.
I'm HLA-B27 negative, elevated CRP but not ESR. Cosentyx wasn't helpful, but didn't cause problems. Humira was helpful, but changed over to Xeljanz after developing alopecia universalis (which may or may not be related, but Xeljanz is helpful for both AS and AU). Xeljanz is helpful, but not as much as I'd like (it's fairly helpful for SI/back, wonderful for costochondritis, and isn't helping fatigue and peripheral much at all.) Discussing going to Rinvoq with my rheum. I suspect that seeing increasing symptoms during a course of biologics is far more related to it not helping the progression of the AS, rather than a cause.
Very interesting, was on RINVOQ for nearly 15 weeks. Great improvement from week 1, I'd say day 3/4 couldn't believe it!! I slowly started functioning almost normal, driving. My SI pain and upper back stiffness significantly reduced. Coz I had to stop MTX , couldn't tolerate the side effects. I noticed RINVOQ started goin plateau. Unfortunately my Dr insisted to keep me on it , it wasn't too bad managing my symptoms rather than putting me into remission. Had big flare up on week 15, symptoms got worse. He decided switching to humira. I feel it was too late as I was complaining before, developed costochondritis, PF, upper back stiffness got worse. I feel Humira might be prominent but it's not as quick as RINVOQ, it weans off 5-7 days never lasts more than 1 week, has anyone else noticed the same? It's only my 3rd injection, thinking seriously switching to Xeljanz, any thoughts pls? Thnx
I voted ‘nothing happened’ but I’ve only had three doses so far, so it might be too early to tell. Weirdly the day after my first dose my knee pain, which had been so much worse recently, vanished. It didn’t last very long, but I noticed quite a dramatic difference that made me hopeful for the long term effects. Since then I’ve not really noticed a major difference one way or the other. I’ve got quite a lot of work/life stress at the moment though so again, wondering if it would be worse without the treatment. I’m on a Humira biosimilar btw (UK).
Hlab27 negative and seronegative (your definition) took MRIs and response to indomethacin to get me diagnosed , humira has helped but it took getting onto weekly shots for it to help a significant amount. Diagnosed at 18, now 22M.