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.
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!