3 ms·

I have a sibling that has been diagnosed with AS, along with a handful of other related diseases, such as juvenile rheumatoid arthritis. The specialists can’t

by chabes 3y ago

I have a sibling that has been diagnosed with AS, along with a handful of other related diseases, such as juvenile rheumatoid arthritis. The specialists can’t concur with their own conclusions, let alone the conclusions of others. Diagnosis changes every few years. It’s a confusing situation for the patient and their family. One treatment that is used for a specific condition might have harmful - even carcinogenic -side effects. It’s difficult

spondylosaurus 3y ago
I hesitate to give unprompted quasi-medical advice to a stranger online, but if the potentially harmful treatment you're referring to is biologic therapy, just know that millions of people have taken TNF inhibitors for decades to positive ends. There are risks, to be sure, but not necessarily greater than the risk of untreated autoimmune disease—runaway inflammation is linked to heart problems, for example, and untreated Crohn's/colitis massively increases your risk of colorectal cancer. I mainly mention this because I was terrified of starting Humira when I got diagnosed with AS years ago—those black box warnings are legit scary. But I had to weigh the risk of maybe developing a rare side effect versus the guarantee of my spine permanently fusing and my immune system burning everything else to the ground out of spite, and ultimately went for the Humira. And I'm glad I did, because my quality of life has improved massively. Which is all to say that I hope your sibling's doing okay and found a treatment that works for them. It's scary out here, but there's hope, I promise.
- alanmoraes 3y ago
  Thank you for your testimonial on Humira.
- ekianjo 3y ago
  Problem with biologics is that you can never really know how long you can take them. Some people who take them for years all of a sudden stop tolerating them and have to drop out of using them
  - ekianjo 3y ago
    not sure why I'm being downvoted here, it's clearly what's happening in practice.
    - spondylosaurus 3y ago
      It's true that biologics can wear off, but two counterpoints: (1) with the wealth of options available on the market today, you can generally hop to a new drug if a particular formulation starts losing its effectiveness, and (2) even if you only got Three Glorious Years of relief before all biologics stopped working for you forever, isn't that still a net gain versus not going on them at all? For what it's worth, though, many people don't develop resistance, or at least not for a loooong time. My gastro told me one patient of his has been on Remicade for 15+ years and it's put them in happy remission the whole time. Not everyone's a success story, but the success stories are very very good.
      - scandinavian 3y ago
        I've been on adalimumab since I was 19, I'm 34 now. Treatment for Crohn's disease. I've had the talk with my doctors multiple times about what we do if the treatment stops working, and they always reassure me that there's multiple other options these days.
      - ekianjo 3y ago
        > many people don't develop resistance, or at least not for a loooong time Yes, but I have also seen people who used biologics for 10 years without issue, and out of the blue they started to have severe side effects that made them move drop off (or move to another one). You just never know.
- velavar 3y ago
  Seconded. My father who also had AS 25 years ago, had to get on sulpha drugs to stop disease progression. In comparison, I consider biologics a walk in the park and truly consider myself lucky to have access to them. I luckily haven't had symptoms of AS (yet) but the auto-immune problems I've had include recurrent uveitis. I was similarly reluctant to get on biologics but having been on it a while now, I truly consider it a miracle drug - especially when the alternative is losing my eyesight.

by chabes 3y ago

spondylosaurus 3y ago

I hesitate to give unprompted quasi-medical advice to a stranger online, but if the potentially harmful treatment you're referring to is biologic therapy, just know that millions of people have taken TNF inhibitors for decades to positive ends. There are risks, to be sure, but not necessarily greater than the risk of untreated autoimmune disease—runaway inflammation is linked to heart problems, for example, and untreated Crohn's/colitis massively increases your risk of colorectal cancer. I mainly mention this because I was terrified of starting Humira when I got diagnosed with AS years ago—those black box warnings are legit scary. But I had to weigh the risk of maybe developing a rare side effect versus the guarantee of my spine permanently fusing and my immune system burning everything else to the ground out of spite, and ultimately went for the Humira. And I'm glad I did, because my quality of life has improved massively. Which is all to say that I hope your sibling's doing okay and found a treatment that works for them. It's scary out here, but there's hope, I promise.

alanmoraes 3y ago
Thank you for your testimonial on Humira.
ekianjo 3y ago
Problem with biologics is that you can never really know how long you can take them. Some people who take them for years all of a sudden stop tolerating them and have to drop out of using them
- ekianjo 3y ago
  not sure why I'm being downvoted here, it's clearly what's happening in practice.
  - spondylosaurus 3y ago
    It's true that biologics can wear off, but two counterpoints: (1) with the wealth of options available on the market today, you can generally hop to a new drug if a particular formulation starts losing its effectiveness, and (2) even if you only got Three Glorious Years of relief before all biologics stopped working for you forever, isn't that still a net gain versus not going on them at all? For what it's worth, though, many people don't develop resistance, or at least not for a loooong time. My gastro told me one patient of his has been on Remicade for 15+ years and it's put them in happy remission the whole time. Not everyone's a success story, but the success stories are very very good.
    - scandinavian 3y ago
      I've been on adalimumab since I was 19, I'm 34 now. Treatment for Crohn's disease. I've had the talk with my doctors multiple times about what we do if the treatment stops working, and they always reassure me that there's multiple other options these days.
    - ekianjo 3y ago
      > many people don't develop resistance, or at least not for a loooong time Yes, but I have also seen people who used biologics for 10 years without issue, and out of the blue they started to have severe side effects that made them move drop off (or move to another one). You just never know.
velavar 3y ago
Seconded. My father who also had AS 25 years ago, had to get on sulpha drugs to stop disease progression. In comparison, I consider biologics a walk in the park and truly consider myself lucky to have access to them. I luckily haven't had symptoms of AS (yet) but the auto-immune problems I've had include recurrent uveitis. I was similarly reluctant to get on biologics but having been on it a while now, I truly consider it a miracle drug - especially when the alternative is losing my eyesight.