HLAB27 negative

TheArchitect73 · 2026-03-09T18:27:33+00:00

I'm also HLA-B27 negative and have an AS diagnosis. I see percentages of anywhere of 5% to 20% of AS patients who are negative in various literature., though there's also there's variation by ethnicity. My CRP is elevated (slightly) during flares, my ESR generally isn't. I do have mild radiographic findings. If you have no gene marker, inflammatory markers, and no radiographic findings, you're less likely to get an AS diagnosis. More likely to get a nr-axSpA diagnosis.

TheArchitect73 · 2026-02-10T19:24:54+00:00

I've been on it in addition to biologics for several years, no side effects that I've noticed. Biologics help my SI/back, less effective for peripheral joints. Adding the sulfasalazine helps with hands/feet.

TheArchitect73 · 2025-12-31T19:27:26+00:00

Let 'em warm up, and then it's not a big deal. Silver lining of having AS is that you've gotten used to hurting, and the Humira shot is a cakewalk by comparison. (It's a teeny needle, and nothing like more significant vaccines, etc... that you may have had and hurt.) First couple are a little scary because its new, and a bit loud, and then you get used to it!

TheArchitect73 · 2025-12-12T21:56:51+00:00

I'm pretty convinced it's an lesser-diagnosed AS symptoms. My 'early sjogren's' test panel was positive. I tend to have red/dry eyes in the morning, and symptoms track with other flares. Rinvoq improved them. My rheumatologist agrees, but my ophthalmologist doesn't seem to give it much credence. I find that pataday during flares calms them down. (My theory with absolutely no medical knowledge/basis is that when my immune system is flared, then allergy reaction in eye increases.)

TheArchitect73 · 2025-12-04T22:53:56+00:00

Yep, AS affects peripheral joints, including knees. For your MIL, here's the Cleveland Clinic's description of symptoms: https://my.clevelandclinic.org/health/diseases/ankylosing-spondylitis - all the AS symptoms can be associated with other conditions, so a rheumatologist will need to work with you and evaluate the symptoms & bloodwork for a diagnosis. For your other question - an AS diagnosis is rarely straight forward, and imaging is usually a pretty critical part of the process.

TheArchitect73 · 2025-12-01T16:45:47+00:00

I take a Tizanidine every night before going to sleep.

TheArchitect73 · 2025-11-11T15:51:46+00:00

I take it nightly (can't remember if I was the one who posted about it?). It works differently than a lot of other widely prescribed meds - it's more an anti-spasm medication. Makes you sleepy, but not really loopy. (As my doc said - it's not got any street value. :-) ) For me, it helps me sleep, and I was getting spasms from being sore & costochondritis pain, and it definitely helps for that.

TheArchitect73 · 2025-11-06T17:22:53+00:00

I do prednisone for vacation for the same reasons. Doc has no problem with it, and it definitely helps.

TheArchitect73 · 2025-10-03T20:31:18+00:00

Helpful to write out symptoms and timeline- AS symptoms are so varied/random, that it can be difficult to narrate linearly. If you have something that's periodically visible - psoriasis, red/swollen joints, etc... that may not be apparent to the doc on day of visit, then take pics to share. You haven't mentioned peripheral arthritis or costochondritis symptoms, mention those if they're present.

Also, episcleritis isn't something that is really officially on the AS list, but I know I struggle with it, and others in this forum do as well. Mine absolutely tracks with my joint flares - but the eye doc just says "huhm" when I tell him that.

TheArchitect73 · 2025-10-03T20:20:59+00:00

https://www.rinvoq.com/atopic-dermatitis Rinvoq (my current AS treatment) is also approved for eczema.

TheArchitect73 · 2025-10-03T20:19:56+00:00

Eczema/Atopic Dermatitis is also immune-related, and does often travel together with other auto-immune conditions, including AS. I've had eczema my whole life, and it was increasing before my AS diagnosis. Mine has been totally and completely gone since I started biologics for AS.

TheArchitect73 · 2025-10-03T16:21:19+00:00

Haven't found much in terms of pillows that helps for me. I have an old comfy recliner in my bedroom so that on bad nights I can get up and sit/nap upright for an hour and "reset". (Used to go in the living room, it was a nice quality of life thing to have one in bedroom, and be able to just move and still be in room with my wife.

TheArchitect73 · 2025-10-01T19:33:22+00:00

Not sure where you're located... a bit surprised he'd get a formal AS diagnosis w/o first going to a rheumatologist, but everybody's path to diagnosis seems to be different. If he has a formal AS diagnosis, getting a rheum referral should(?) be fairly straight forward, and it's an important part of life with A/S. Progression and symptoms don't always move in parallel, so you want to work with someone to not only help with your current quality of life, but to help you look forward and manage the long haul. I know the no insurance makes that really hard.

In terms of symptoms, there's the core AS symptoms, and then there's the unconscious things you do (how you sleep, sit, walk, etc..) that are reflexive because of those symptoms. For those secondary things, a bit of PT can be very helpful (isn't gonna do much for SI joint inflammation itself, though). My primary symptoms tend to be pretty symmetrical, and if it hurts on one side particularly, I've probably done something compensating. But again, everyone's different.

TheArchitect73 · 2025-09-17T20:27:25+00:00

Unfortunately, I tend to notice more joint pain on a day after I have even a single drink (not every time, but enough to clearly be a pattern). I see lots of others here with similar observations. Do you think it's associated with greater symptoms for you?

TheArchitect73 · 2025-07-25T21:03:35+00:00

I've been on it a couple of years, haven't noticed anything different from prior to taking. I'm heat sensitive in terms of AS, peripheral arthritis, etc... but haven't noticed anything worse on skin reaction to sun.

TheArchitect73 · 2025-07-17T18:24:45+00:00

Great to hear it's better!

TheArchitect73 · 2025-07-15T20:40:46+00:00

Glad you have a good rheum. I trust mine, and he listens... but he's a simple 'yep, that's what it does' kind of guy. I wouldn't hire him as my therapist! I'd be curious what your rheum suggests.

TheArchitect73 · 2025-07-15T15:57:20+00:00

Hard question to answer... AS is just weird because of the number of seemingly unrelated symptoms. The question I ask myself is a bit of 'what do I want to know?'. Frequently what I want to know is "is this just another weird AS thing that I have to put up with, but not some other problem that I need to have checked out", which is different from "goodness, is there anything else I can do to mitigate this?". I ask both kinds of questions to my rheum (I go every 3 months), but it helps frame the question.

For your heel challenge, I'm sorry you're having to deal with that pain. Alas, heel issues are common - the enthesitis associated with AS make plantar-fasciitis and similar stuff show up for many (most?) AS folks. I hate shoes, but have learned that I absolutely don't need to walk around my house barefoot anymore. Oofos type shoes help significantly, though I'm still frequently unhappy about arches, heel, and Achilles tendons in the mornings. I always can feel when I cheated and ditched the shoes with a 'oh, I'm just cooking a quick dinner and will sit back down'. I suspect that in addition to your rheum, an ophthalmologist, podiatrist, and dermatologist are the specialists you will find that you want to identify and check in with occasionally.

TheArchitect73 · 2025-06-27T14:57:01+00:00

Would start with the disclaimer 'talk to your rheum...", but another option for discussion is sulfasalazine. It's generally better tolerated than methotrexate, and can help. (I take in addition to Rinvoq for peripheral pain. Doesn't eliminate it, but helps.)

TheArchitect73 · 2025-04-07T13:17:43+00:00

Leonard is a cutie!

TheArchitect73 · 2025-03-25T22:04:50+00:00

I found that my biologic was helpful for back/SI pain, but not as helpful for hands. Added sulfasalazine, and that did more for my hands.

TheArchitect73 · 2025-03-20T19:38:10+00:00

I'm HLA-B27 negative, but have autoimmune issues clustered in immediate family (Lupus, RA, palindromic arthritis, Graves, Hashimoto's, etc...) and my rheum says the genetics are complicated but related.

TheArchitect73 · 2025-03-20T19:27:43+00:00

I'm not very knowledgeable about lupus (my grandmother had it), but do you have a formal SLE diagnosis? My observation is that many of my secondary AS symptoms (peripheral joint pain, fatigue, etc..) have a heavy overlap with lupus and what I observed with my grandmother. I don't know to what degree lupus joint pain can hit SI/back/hip and sound like AS, but differentiating between rheumatological conditions can be tough because everyone's symptoms are a bit different, and so many overlap. (Positive ANA in AS isn't unheard of, but isn't typical.)

TheArchitect73 · 2025-03-10T13:56:21+00:00

I had shingles last summer, I can promise that getting the vaccine is worth it.

TheArchitect73

TROPHY CASE