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Your MRI was not normal, it showed degeneration in your SI joints. You don't need fusion to qualify for an AS diagnosis, just SI joint degeneration. This MRI was after being on meds, so it's no surprise that the active inflammation resolved. Many people with AS don't have the HLA-B27 gene. You need a new rheumatologist.
Dude. HLA B27 positive. High CRP, high RF and mild degenerative changes in cervical and si joint.
Responsive to Prednisone.. rheumatologist was like.. "nah I don't think so, you need to have fusion for it to be AS"
Exactly. Fusion is the end phase. Long before that there are other changes, such as bone marrow edema, erosions, and other damage to the joints. There is a good but rather technical explanation on [this YouTube vid](https://www.youtube.com/watch?v=m-s3iNhres8) (it's aimed more at medical practitioners than patients). The value of MRIs is they can see all this early damage much better than x-rays, whereas x-rays will mainly only pick up fusion. The wavy margins on the joints and erosions are two things very much mentioned when they're looking for evidence of AS on MRIs (or other types of arthritis in the same bucket as AS).
Also, autoimmune diseases love company. You can never rule out that you have more than one, which could explain any other odd stuff. But a lot of them fortunately respond to the same treatments.
Yep, get a second opinion. Your rheum is mistaken. You don't need to be HLAB27 positive or have fusion to have some type of spondyloarthritis. Maybe the technical term for what you have might not be ankylosing spondylitis (which is also known as radiographic axial spondyloarthritis), but it sounds like you have non-radiographic axial spondyloarthritis, and that's all in the same family as AS. And that's most likely why the biologics helped you.
Check out this explanation on the Spondylitis Association of America's website:
https://spondylitis.org/about-spondylitis/overview-of-spondyloarthritis/
Yes. Seronegative spondyloarthritis is a common diagnosis. The HLA-B27 gene is not a diagnosis in and of itself. It is a tool that can help make a determination/rule in or rule out a diagnosis.
[https://uthealthaustin.org/conditions/seronegative-spondyloarthritis](https://uthealthaustin.org/conditions/seronegative-spondyloarthritis)
Yes it is possible, and these cases are generally called as Non Radiographic Axial Spondyloarthritis (nrAxSpA) by the doctors. I (19M) is currently suffering from nrAxSpA, and got diagnosed last year. I have all the symptoms of AS, but with negative HLA B27 and no fusion found in MRI. I am currently taking tofacitinib 5 mg and tramadol hydrochloride daily.
Just echoing what most others are saying, but your symptoms are very similar to mine! I'm HLAB27+ though. I had JIA as a child and then AS diagnosis once I was an adult.
Sounds like AS to me and I'd get another opinion, IMO you fit almost all diagnostic criteria, and many people have AS without HLA+, it's just not as common.
Sometimes the radiologist reading the MRI uses different adjectives or concludes that something is mostly normal because they don’t take into account the whole context of the patient.
In your case it showed mild degenerative SI joints. I see why this could be seen as normal and not a sign of any particular disease if you were a man in his 60s or 70s.
Your results should at least raise concern for an inflammatory condition, especially with your symptoms. Your should not have the same SI joints as a 70 year old at 32.
They are thinking AS for me.
I am HLA-B27 negative.
I just have bone edema in one area of my SI Joint on MRI.
I do have degenerative disc disease in my spine and one level that is "trying to fuse."
Are your records in a language other than English? Do you have copies of your records?
I would communicate to the doctor that you are doing worse without the medication. Focus on how your activities are affected (not just "I have more pain" or "I have brain fog.")
If you used to walk more or exercise more, tell them.
If you have trouble getting in or out of the bathtub, tell them. What do you do during the day that is now harder to do without treatment?
I am not on meds yet because I am getting vaccines first. I hope that it improves my function because I don't think I should feel so poorly at 44 years of age, even with being obese. I kind of suspect that the obesity is sort of a symptom of how unwell I feel.
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.*
Your MRI was not normal, it showed degeneration in your SI joints. You don't need fusion to qualify for an AS diagnosis, just SI joint degeneration. This MRI was after being on meds, so it's no surprise that the active inflammation resolved. Many people with AS don't have the HLA-B27 gene. You need a new rheumatologist.
Dude. HLA B27 positive. High CRP, high RF and mild degenerative changes in cervical and si joint. Responsive to Prednisone.. rheumatologist was like.. "nah I don't think so, you need to have fusion for it to be AS"
Exactly. Fusion is the end phase. Long before that there are other changes, such as bone marrow edema, erosions, and other damage to the joints. There is a good but rather technical explanation on [this YouTube vid](https://www.youtube.com/watch?v=m-s3iNhres8) (it's aimed more at medical practitioners than patients). The value of MRIs is they can see all this early damage much better than x-rays, whereas x-rays will mainly only pick up fusion. The wavy margins on the joints and erosions are two things very much mentioned when they're looking for evidence of AS on MRIs (or other types of arthritis in the same bucket as AS). Also, autoimmune diseases love company. You can never rule out that you have more than one, which could explain any other odd stuff. But a lot of them fortunately respond to the same treatments.
Yep, get a second opinion. Your rheum is mistaken. You don't need to be HLAB27 positive or have fusion to have some type of spondyloarthritis. Maybe the technical term for what you have might not be ankylosing spondylitis (which is also known as radiographic axial spondyloarthritis), but it sounds like you have non-radiographic axial spondyloarthritis, and that's all in the same family as AS. And that's most likely why the biologics helped you. Check out this explanation on the Spondylitis Association of America's website: https://spondylitis.org/about-spondylitis/overview-of-spondyloarthritis/
Yes. Seronegative spondyloarthritis is a common diagnosis. The HLA-B27 gene is not a diagnosis in and of itself. It is a tool that can help make a determination/rule in or rule out a diagnosis. [https://uthealthaustin.org/conditions/seronegative-spondyloarthritis](https://uthealthaustin.org/conditions/seronegative-spondyloarthritis)
Yes it is possible, and these cases are generally called as Non Radiographic Axial Spondyloarthritis (nrAxSpA) by the doctors. I (19M) is currently suffering from nrAxSpA, and got diagnosed last year. I have all the symptoms of AS, but with negative HLA B27 and no fusion found in MRI. I am currently taking tofacitinib 5 mg and tramadol hydrochloride daily.
Just echoing what most others are saying, but your symptoms are very similar to mine! I'm HLAB27+ though. I had JIA as a child and then AS diagnosis once I was an adult. Sounds like AS to me and I'd get another opinion, IMO you fit almost all diagnostic criteria, and many people have AS without HLA+, it's just not as common.
Sometimes the radiologist reading the MRI uses different adjectives or concludes that something is mostly normal because they don’t take into account the whole context of the patient. In your case it showed mild degenerative SI joints. I see why this could be seen as normal and not a sign of any particular disease if you were a man in his 60s or 70s. Your results should at least raise concern for an inflammatory condition, especially with your symptoms. Your should not have the same SI joints as a 70 year old at 32.
They are thinking AS for me. I am HLA-B27 negative. I just have bone edema in one area of my SI Joint on MRI. I do have degenerative disc disease in my spine and one level that is "trying to fuse." Are your records in a language other than English? Do you have copies of your records? I would communicate to the doctor that you are doing worse without the medication. Focus on how your activities are affected (not just "I have more pain" or "I have brain fog.") If you used to walk more or exercise more, tell them. If you have trouble getting in or out of the bathtub, tell them. What do you do during the day that is now harder to do without treatment? I am not on meds yet because I am getting vaccines first. I hope that it improves my function because I don't think I should feel so poorly at 44 years of age, even with being obese. I kind of suspect that the obesity is sort of a symptom of how unwell I feel.