@zaratustra yeah. it also has this really annoying thing where... you know how when you fall asleep on your arm for a really long time, and when it comes back it has this horrible dull almost flu-like ache that feels like it's inside your bones? it's like that but for no reason.
@dngrs tbh I'm just glad my disease progression doesn't seem to be on the path where I'm gonna need to risk going the infliximab route any time soon. NSAID pain management is mostly going ok. but I'm also one of the weird ones who is HLA-B27 antigen negative, so maybe that's why I don't seem to be deteriorating quite so fast.
@dngrs the data is sparse on that front. 95% of AS patients are HLA-B27 positive, so we're talking one twentieth the cohort size for studies. there seems to be some correlation between being HLA-B27 negative and lower severity and slower disease progression, but it's hard to make a concrete statement on that because AS diagnosis is largely based on symptoms and exclusion of other conditions, so, absent HLA-B27, there's not much of an identifiable physiological fingerprint to go by.
@dngrs it's possible that us HLA-B27 negative folks have some other distinct condition or variant that, right now, we don't understand well enough to distinguish it from "AS" as a broad symptom-focused disease label.
but it's also possible that HLA-B27 is simply one mechanism by which physiological processes can become disordered in the way that they are with AS, and we just haven't figured out what that other mechanism is.
so it ends up being kinda muddy and bogged down in semantics.
@gsuberland interesting. My (half) sister is positive, and we're pretty sure we inherited from our father, who never got a diagnosis but showed definite symptoms. I'm constantly both amazed and frustrated by what modern medicine can and cannot (yet?) do
@gsuberland FWIW, her symptoms seem a lot worse, I'm more or less stable since years, however Long Covid has thrown a very severe curveball in my direction and I'm now mostly unable to work because of that. LC seems to be correlated with AS, too.
@gsuberland stay safe! I was out of order for half a year after my first infection, but the second one completely wrecked me (so far 17 months in, much worse symptoms than after the first and no improvement whatsoever)
@Laukidh yeah I've heard it pretty much knocks you out for a day or two after the injections. a friend of mine's dog recently started on a new canine MAB for arthritis and has a similar reaction each time, so I guess it's not limited to humans.
@gsuberland I think part of it is they give you some antihistamines beforehand to minimize risk of a reaction. But I always liked to think of it as my body going “ahhhhhh” (like, in a good way)
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