3 ms·

All of them increase risk of cancer (EDIT: upon further review, maybe not all of them? Or maybe just with combination therapy?) and severe infection. Many of th

All of them increase risk of cancer (EDIT: upon further review, maybe not all of them? Or maybe just with combination therapy?) and severe infection. Many of the biologics are also quite new, and the long term effects of taking them are not well understood. Plus, in some cases they don't work well enough alone and so multiple drugs are required (a biologic in combination with something like methotrexate or azathioprine is typical), which further increases risks. Anecdotally, I know of a couple people who had bizarre and severe immune reactions to biologics that left doctors baffled, so that's something that can also occur, apparently. Also some people are just prescribed steroids like prednisone for whatever reason, which has some pretty negative long term effects.

jessriedel 3y ago
At least for Ulcerative Colitis, there are safe drugs that are much less effective (mesalamine) but the strong effective drugs all come with long-term cancer risks (prednisone, remicaid, entyvio, etc), as you say. The newer drugs like entyvio are generally less risky than the older ones, mostly on account of being more targeted, but the risk is still significant. I imagine the situation is similar for CD.
- 0x00_NULL 3y ago
  Becareful with Stelara. The body reuses the same inflammatory cytokine group that is the target in the lungs to fight off infection. So, your lungs can’t fight infection very well on Stelara small issues can very quickly become life threatening. I got Pneumonia that turned into Sepsis in about 60 hours. It happened so fast that the doctors brought in an addiction specialist. The only other time they’ve seen this is when drunks pass out and aspirate on their vomit. (Crohn’s doesn’t let me drink, so we can rule that out…) After days of studies, we found the warning label on Stelara about the elevated risk of lung infections. My care team reached out the Janssen and confirmed it. After about 4 days of IV antibiotics, I was sent home to continue on oral antibiotics. Still, if I die from something like this, it’s still worth it to take these biologics. At least I lived a much better life for a while thanks them. The side effects can be life threatening, but the ability to have a life is worth it. TLDR: On Stelara, I went from Pneumonia to Sepsis in about 60 hours while taking oral antibiotics. The warnings on the labels of the biologics are serious - and the side effects can be life threatening.
epgui 3y ago
I mean if you’re thinking about the big picture, chronic inflammation increases cancer risk even more. For corticosteroids, I agree… But that’s not supposed to be used long term and is a bit of an emergency resort.
- 6177c40f 3y ago
  Not supposed to be used long term, but sometimes they are, I personally know two people who are on corticosteroids long term because nothing else works. You're right though, it's all a calculated risk because untreated disease can be life threatening, in addition to being debilitating.
pants2 3y ago
I had a severe anaphylactic reaction to Remicade, it was a terrifying experience. The doctor had seen it a few times before so apparently it's not uncommon.
- wholinator2 3y ago
  On your first injection or a little while in?
  - pants2 3y ago
    It was on my second infusion. Started having trouble breathing about a minute in.
spondylosaurus 3y ago
Untreated bowel inflammation also increases your risk of cancer significantly. If cancer risk is on the table either way, might as well take the drugs that increase your quality of life in the meantime :) Plus—you have a chance of beating cancer. But a colectomy is a one-way trip! (Prednisone will absolutely fuck you up long-term though. No cancer risk afaik, but osteoporosis risk is through the roof. I've heard of UC patients who needed joint replacements in their 30s from long-term steroid use...)
arcticbull 3y ago
> Many of the biologics are also quite new, and the long term effects of taking them are not well understood. It's interesting that this has become a talking point now for basically any new therapy. As soon as something new and promising comes out, we "don't understand the long-term effects" -- but this discounts (1) the years and years of research and development that go into them (2) the decades of research and development that has gone into the underlying platforms (3) the trials that have happened and (4) the known and understood negative effects of the disease being treated. The FDA tends not to yolo new therapies. We see this with GLP-1's all the time. They have side-effects, what will happen later, etc -- as though obesity doesn't have side-effects, and predispose you to every disease known to man? I feel like this all started during the COVID vaccine hysteria, but maybe it was always there and I wasn't paying attention? I feel like a decade ago when a new treatment for a chronic disease came out people threw themselves at it. I guess maybe as a concrete follow-up question: how many years would it take before you felt comfortable with it, and why that number specifically? 10? 20? 30?
- 6177c40f 3y ago
  I'm not trying to discourage the use of these drugs. In fact, I would absolutely use them if I required them- their potential benefits outweigh the risks. But I also must admit that I would still feel more than a bit nervous about it. I also should point out that "long term effects of taking them are not well understood" isn't my personal opinion per se, it's something I've read in the literature about these drugs, including relatively recent research (I wish I had a good source that summarizes this point, but I don't have one on hand). Concern about long term effects is real and legitimate, and pre-dates concern about COVID-19 vaccines (another instance where I believe the benefit far outweighs the risk, for the record). There must always be a balance between spending time testing vs. getting a pharmaceutical deployed. It would be absurd to imply that we're not making a tradeoff here.
pseudosudoer 3y ago
Your statements are true, but please present this information with nuance. Yes you have an increased risk of cancer, but it's a small percentage and not a guarantee. Untreated bowel disease is guaranteed to have side effects, horrible QoL, and a much higher risk of cancer than medications. Prednisone is the one exception though, unless life is completely unlivable or you have a significant chance of death (typically from perforation) I would avoid it.
- 6177c40f 3y ago
  I think that the benefit of the medication is clear, or else why would anyone take it? I definitely do not want to imply that I don't think the cost-benefit analysis comes out in favor of taking the medication. I just wanted to underscore how difficult of a situation it is to have a disease that necessitates the use of these drugs.

jessriedel 3y ago

At least for Ulcerative Colitis, there are safe drugs that are much less effective (mesalamine) but the strong effective drugs all come with long-term cancer risks (prednisone, remicaid, entyvio, etc), as you say. The newer drugs like entyvio are generally less risky than the older ones, mostly on account of being more targeted, but the risk is still significant. I imagine the situation is similar for CD.

0x00_NULL 3y ago
Becareful with Stelara. The body reuses the same inflammatory cytokine group that is the target in the lungs to fight off infection. So, your lungs can’t fight infection very well on Stelara small issues can very quickly become life threatening. I got Pneumonia that turned into Sepsis in about 60 hours. It happened so fast that the doctors brought in an addiction specialist. The only other time they’ve seen this is when drunks pass out and aspirate on their vomit. (Crohn’s doesn’t let me drink, so we can rule that out…) After days of studies, we found the warning label on Stelara about the elevated risk of lung infections. My care team reached out the Janssen and confirmed it. After about 4 days of IV antibiotics, I was sent home to continue on oral antibiotics. Still, if I die from something like this, it’s still worth it to take these biologics. At least I lived a much better life for a while thanks them. The side effects can be life threatening, but the ability to have a life is worth it. TLDR: On Stelara, I went from Pneumonia to Sepsis in about 60 hours while taking oral antibiotics. The warnings on the labels of the biologics are serious - and the side effects can be life threatening.

epgui 3y ago

I mean if you’re thinking about the big picture, chronic inflammation increases cancer risk even more. For corticosteroids, I agree… But that’s not supposed to be used long term and is a bit of an emergency resort.

6177c40f 3y ago
Not supposed to be used long term, but sometimes they are, I personally know two people who are on corticosteroids long term because nothing else works. You're right though, it's all a calculated risk because untreated disease can be life threatening, in addition to being debilitating.

pants2 3y ago

I had a severe anaphylactic reaction to Remicade, it was a terrifying experience. The doctor had seen it a few times before so apparently it's not uncommon.

wholinator2 3y ago
On your first injection or a little while in?
- pants2 3y ago
  It was on my second infusion. Started having trouble breathing about a minute in.

spondylosaurus 3y ago

Untreated bowel inflammation also increases your risk of cancer significantly. If cancer risk is on the table either way, might as well take the drugs that increase your quality of life in the meantime :) Plus—you have a chance of beating cancer. But a colectomy is a one-way trip! (Prednisone will absolutely fuck you up long-term though. No cancer risk afaik, but osteoporosis risk is through the roof. I've heard of UC patients who needed joint replacements in their 30s from long-term steroid use...)

arcticbull 3y ago

> Many of the biologics are also quite new, and the long term effects of taking them are not well understood. It's interesting that this has become a talking point now for basically any new therapy. As soon as something new and promising comes out, we "don't understand the long-term effects" -- but this discounts (1) the years and years of research and development that go into them (2) the decades of research and development that has gone into the underlying platforms (3) the trials that have happened and (4) the known and understood negative effects of the disease being treated. The FDA tends not to yolo new therapies. We see this with GLP-1's all the time. They have side-effects, what will happen later, etc -- as though obesity doesn't have side-effects, and predispose you to every disease known to man? I feel like this all started during the COVID vaccine hysteria, but maybe it was always there and I wasn't paying attention? I feel like a decade ago when a new treatment for a chronic disease came out people threw themselves at it. I guess maybe as a concrete follow-up question: how many years would it take before you felt comfortable with it, and why that number specifically? 10? 20? 30?

6177c40f 3y ago
I'm not trying to discourage the use of these drugs. In fact, I would absolutely use them if I required them- their potential benefits outweigh the risks. But I also must admit that I would still feel more than a bit nervous about it. I also should point out that "long term effects of taking them are not well understood" isn't my personal opinion per se, it's something I've read in the literature about these drugs, including relatively recent research (I wish I had a good source that summarizes this point, but I don't have one on hand). Concern about long term effects is real and legitimate, and pre-dates concern about COVID-19 vaccines (another instance where I believe the benefit far outweighs the risk, for the record). There must always be a balance between spending time testing vs. getting a pharmaceutical deployed. It would be absurd to imply that we're not making a tradeoff here.

pseudosudoer 3y ago

Your statements are true, but please present this information with nuance. Yes you have an increased risk of cancer, but it's a small percentage and not a guarantee. Untreated bowel disease is guaranteed to have side effects, horrible QoL, and a much higher risk of cancer than medications. Prednisone is the one exception though, unless life is completely unlivable or you have a significant chance of death (typically from perforation) I would avoid it.

6177c40f 3y ago
I think that the benefit of the medication is clear, or else why would anyone take it? I definitely do not want to imply that I don't think the cost-benefit analysis comes out in favor of taking the medication. I just wanted to underscore how difficult of a situation it is to have a disease that necessitates the use of these drugs.