Which drugs are you talking about? Pretty much all the biologics for CD have amazingly positive safety profiles…
We have no evidence biologics caused it but the fact that they reduce t-cell activity, it is definitely plausible. That is why all of them disclose the blanket cancer risks. She is not currently cancer free but we are concerned that the next one will be something with a much worse 5 year outlook
We would rather her not be on them but they are the best thing that currently exists.
She is currently on tremfya
Also some people are just prescribed steroids like prednisone for whatever reason, which has some pretty negative long term effects.
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...)
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.
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.
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?
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.
For corticosteroids, I agree… But that’s not supposed to be used long term and is a bit of an emergency resort.
However I have been prescribed prednisolone for brief periods in the past when I’ve had active disease, which has a lot of known risks with long term use.
I don’t know if it’s still used much but at one stage my doctor considered prescribing Azathioprine (Imuran), which has some potential nasty side effects and risks.