[rgmerk]

I have Crohn’s but am one of the lucky 20% who is in long-term remission without surgery and without the more problematic drug therapies - thus far!

But if this works as well as hoped it will bring a lot of peace of mind that if I do ever need surgery, I won’t be going back in for more every few years.

Medical research is awesome, for all its inefficiencies.

[wholinator2]

How did you do it?

[rgmerk]

No idea.

Taken mesalazine as directed by my doctor for nearly 30 years, and been extremely lucky.

(I’ve had to take predisone three times for flare ups, but not for more than 20 years. As I said, extremely lucky).

[epgui]

Which drugs are you talking about? Pretty much all the biologics for CD have amazingly positive safety profiles…

[jml78]

My wife is on a biologic for psoriatic arthritis. We are scared of the long term impacts around cancer. Within 8 years of being on various biologics she was diagnosed with cancer late last year in her early 40s. No family history of cancer.

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.

[computer7050]

Rinvoq?

[jml78]

That is one she has been on in the past. She has gone thru about 8 trying to find one that works best for her.

She is currently on tremfya

[computer7050]

Thanks for the response. I have a family member about to start on Rinvoq and cancer risk is weighing on my mind as well.

[TheLML]

I've been on Rinvoq since last summer and I delayed getting on it for that very reason. Reading the risks was really not making me feel well, after I've already taken multiple other medications. The worst part is, that it doesn't work as perfectly as some previous meds have. But at least I can enjoy eating out occasionally again without much worry and can travel again. That quality of life improvement puts it into a slightly better perspective again.

[jml78]

I am probably sensitive because my mom passed away due to stroke prior to my wife being on Rinvoq but that was a bigger concern for me when my wife went on it. Learn to identify stroke symptoms.

[6177c40f]

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.

[spondylosaurus]

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...)

[jessriedel]

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]

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.

[pants2]

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]

On your first injection or a little while in?

[pants2]

It was on my second infusion. Started having trouble breathing about a minute in.

[pseudosudoer]

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]

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.

[arcticbull]

> 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]

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.

[epgui]

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]

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.

[rgmerk]

I’m in the very fortunate position of not having to keep track of the most recent Crohn’s therapies.

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.

[purple_ferret]

some of them you have to take with an immunomodulator to suppress the possibility of antibodies, and those increase the risks of lymphoma and some other stuff.

[deluxeroyale]

And the immunomodulotors(thiopurine) comes with an 2x risk of skincancer and 3x lymphoma (monotherapy). anti-TNF comes with an 3x associated risk of lymphoma (monotherapy). Combined it’s doubled (6x risk of lymphoma) Integrin Receptor Antagonist are not associated with any increase of cancer.

[odyssey7]

If so then they are a lesson in how misleading statistics can be.