Akylosing Spondylitis.
Im trying to follow those that replied to this thread. Seems a basic function but I cant see a follow button on Lemmy! can anyone tell me how to follow others?
I can answer this one due to first hand experience - it’s a condition caused by axial spondyloarthritis which is an autoimmune disease that attacks joints, in this case in the spine. Inflammation of joints leads to creation of osteophytes - bony projections that accumulate at the edges of vertebra that can form a bridge and fuse together. It is postulated that there’s a genetic component to this process because there are people who have inflammation but no excess of osteophytes without a solid reason but to be honest there are a lot of unknowns about this disease.
Sorry to hear you have first hand experience, was any treatment effective? The point of posting was a test, to see if some medical education can be done over fediverse. Still exploring what these sites can do
Mine’s not progressed that far, caught it relatively early so just degenerative changes and random inflammation all over the place. I’m on maximum dose of NSAIDs (like Celecoxib which are better than nothing and I’m fortunate to tolerate them so far) and on a waitlist for biologic treatment qualification but my country doesn’t pay for it unless you’re already fusing so I don’t put much hope in it. This kind of medicine can be brought for ~$150 per month (cheapest TNFa inhibitor generic like Hyrimoz or Yuflyma) but up to $2000/m for stuff that you have to use if those don’t help (IL17A and JAK inhibitors). Apparently DMARDs like Sulfasalazine are no longer used even though they were standard just a couple of years ago since they’re not very effective in treating axial kind of this disease, just peripherial.
If you just found out - I think everyone affected wants to educate others after their diagnosis so that they don’t have to go through the same unnecessary pain but doctors just don’t have time to consider rare diseases. There’s also an issue that it’s common for this disease to present no biomarkers (especially if you have non-radiographic kind) so you might have inflammation visible on MRI with normal CRP and sed rate, weird stuff like that. There are lots of people that were referred to a psychologist before they were referred to a rheumatologist, at least where I live.
The only way for people not to go through this horrible process is to have better funded healthcare. When healthcare is a machine that’s supposed to make a profit there’s no sense in spending too much time on expensive to treat stuff. There is no magic solution unfortunately. I mean there is but it’s called fringe left ;)
Thats very interesting, I dont know much about these medications. Which country are you in?
Also what is ‘fringe left’? I never heard this phrase, where does it come from?
These are standard course of treatment according to current state of medical / scientific knowledge. I’m in Poland but what I’ve shared is generally what the course of treatment is. Most people are fine with NSAIDs.
I was joking that healthcare reform that would solve it would be deemed too left wing politically. There’s been some activism in the US on that front like shooting private healthcare CEO but even raising taxes is now ridiculed.
What are we looking at? (I get it’s the spine, but what makes the image look the way it does?)
Akylosing Spondylitis. Im trying to follow those that replied to this thread. Seems a basic function but I cant see a follow button on Lemmy! can anyone tell me how to follow others?
Thanks.
I’ve read a little about A.S., but had no idea what it looked like.
I too have no idea how to follow someone.
I can answer this one due to first hand experience - it’s a condition caused by axial spondyloarthritis which is an autoimmune disease that attacks joints, in this case in the spine. Inflammation of joints leads to creation of osteophytes - bony projections that accumulate at the edges of vertebra that can form a bridge and fuse together. It is postulated that there’s a genetic component to this process because there are people who have inflammation but no excess of osteophytes without a solid reason but to be honest there are a lot of unknowns about this disease.
No idea why OP posted it though.
Sorry to hear you have first hand experience, was any treatment effective? The point of posting was a test, to see if some medical education can be done over fediverse. Still exploring what these sites can do
Mine’s not progressed that far, caught it relatively early so just degenerative changes and random inflammation all over the place. I’m on maximum dose of NSAIDs (like Celecoxib which are better than nothing and I’m fortunate to tolerate them so far) and on a waitlist for biologic treatment qualification but my country doesn’t pay for it unless you’re already fusing so I don’t put much hope in it. This kind of medicine can be brought for ~$150 per month (cheapest TNFa inhibitor generic like Hyrimoz or Yuflyma) but up to $2000/m for stuff that you have to use if those don’t help (IL17A and JAK inhibitors). Apparently DMARDs like Sulfasalazine are no longer used even though they were standard just a couple of years ago since they’re not very effective in treating axial kind of this disease, just peripherial.
If you just found out - I think everyone affected wants to educate others after their diagnosis so that they don’t have to go through the same unnecessary pain but doctors just don’t have time to consider rare diseases. There’s also an issue that it’s common for this disease to present no biomarkers (especially if you have non-radiographic kind) so you might have inflammation visible on MRI with normal CRP and sed rate, weird stuff like that. There are lots of people that were referred to a psychologist before they were referred to a rheumatologist, at least where I live.
The only way for people not to go through this horrible process is to have better funded healthcare. When healthcare is a machine that’s supposed to make a profit there’s no sense in spending too much time on expensive to treat stuff. There is no magic solution unfortunately. I mean there is but it’s called fringe left ;)
Thats very interesting, I dont know much about these medications. Which country are you in? Also what is ‘fringe left’? I never heard this phrase, where does it come from?
These are standard course of treatment according to current state of medical / scientific knowledge. I’m in Poland but what I’ve shared is generally what the course of treatment is. Most people are fine with NSAIDs.
I was joking that healthcare reform that would solve it would be deemed too left wing politically. There’s been some activism in the US on that front like shooting private healthcare CEO but even raising taxes is now ridiculed.
Is Polish your first language? Because your written English is perfect, your writing is like that of a (well educated) native!