this post was submitted on 16 Sep 2023
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Hope it's not a stupid question but would this kind of thing work for ankylosing spondylitis??
I ask because I suffer from AS the doctor's that I've gone to are always arguing whether it's an autoimmune or an autoinflammatory disease, and on the web it says that the underlying mechanism is either of the two as well.
So it's not clear to me whether it's one or the other, or if itimplies the same thing. I've read a huge deal about AS but I'm not really good at biology or medicine to understand a lot.
Honestly the only reason I'm commenting -and asking- here, is because I want to have hope that this actually leads up to something that can help me stop this fucking pain that makes me feel like I want to die (figuratively) but I'm afraid of this being a clickbait article.
Also my English is not the best so sorry for any mistakes and for the long comment.
Do you take humira or another medicine for it? I have AS too and it’s bearable with Humira for me. But yeah if this research leads to something that would be great
Oof I've had an experience with these meds...
I used to take Humira for 5 years but my country stopped delivering it (I used to live in Venezuela), then I moved ti the US and started Humira again, but it was about 30-50% effective only, I still had a lot of pain
I then went through Cosentyx and Taltz, none worked. Then I tried Enbrel, same effectiveness, got it through a foundation. Healthcare didn't want to cover it and the foundation didn't approve me if I had Healthcare.
Got sick in the US, lost all my money (due to lack of money), so I spent the little I had saved to return to my country, moved to Brazil and I'm about to start Golimumab (Simponi) tomorrow, hopefully it works because I haven't gotten medication in 2 months and the pain feels unbearable.
Having said all this, if there is a speck of a chance that this helps people with AS and other similar conditions, it would make me happy. Having this kind of pain is unbearable.
Sorry for the long comment, I suddenly wanted to rant about this!
Wow. You’ve tried a lot more than me. I just met a nurse in the airport and she said to try this drug she administers, but I can’t remember the name now… she did send me a link to their website though. But honestly I’m a bit suspicious of stuff like this. https://www.soleohealth.com/chronic-inflammatory-disorder/
But I mean, if you’re desperate then maybe give them a call, idk. Kinda seemed too good to be true, the story she was spinning for me.
I'm sorry! My knowledge of this process does not extend to the point where I could even give you a hint of the answer. To be honest, it would require me diving into the underlying mechanisms of your condition, and it sound like your doctor has said it isn't even settled science why it's happening, so I don't think anyone can tell you if this would work for you.
I know that isn't what you wanted to hear, but two things: 1) this treatment is a long way off anyway, so anyone will have to wait for it to be available, and 2) there are probably many other treatments coming down the line for your condition... even if those also take a long time.
Anyway, I'm sorry for your pain and that I couldn't help! Honestly, I hope something will be available to help you many years before this becomes a treatment option.