Oh, I can tell I am listening to an emotional fear response throughout this thread. As you've been reading some bad stories and worried that they are the majority or will happen to you (as I said earlier, it's human nature and all).
Let me ask you this, who fills out those Comment Cards at restaurants? It's nearly all those who had an awful dining experience (maybe their server was rude, food overcooked, waited a very long time, etc etc.). It's pretty rare to get a comment card filled out saying the service and food was good or great (except the rare case where waitstaff went well over and beyond all expectations). Same thing goes with biologics, mostly those who experienced a side effect who rant online.
As far as UC medications go they all follow the same trend: ~65% of us get a response and the rest do not, and the most concerning side effects are "rare," single digit percentage odds whether you are talking mesalamine-intolerance, talking thiopurine-intolerance (extreme vomiting from azathiopurine/imuran/6mp), or talking a reaction to a biologic. Each time you try a new medication there's about the same 65% odds that it will improve your symptoms, and a very small but real risk. A treatment is a treatment regardless of what it's called and nothing gives us 100% odds of a success. One can fret about the next level of treatment and suffer in their quality of life as they delay treatment out of fear, or they can try it and see. It either works or it does not work, only trying tells you which you get. Best to try and move on quickly rather than beat yourself over what could possibly happen (and suffer for months and/or years due to a fear of trying what's next).
There's risk in doing nothing, colorectal cancer, as well and inaction (I should've could've done something earlier to spare myself getting a CRC).
But as the lymphoma risks of biologics that seem to scare folks the most. So, lets take a deeper dive into what that's all about. During the initial clinical trials of remicade, two adolescent boys got lymphoma and that was the basis of the black box warning. One important thing to note, this clinical trial like all them, allow you to concurrently continue your other medications while undergoing the trial. The two adolescents in question where also on thiopurines (azathioprine/imuran/6mp) in addition to remicade. Given, thiopurines are already known to have rare odds of getting lymphoma. So, it was most likely the thiopurines that caused the problem. If you're concerned about lymphoma risks then do not take the thiopurines concurrently with the biologics (you currently are not taking a thiopurine), especially if you are an adolescent male. That'll most likely eliminate all odds of the lymphomas.
Lets ask another question regarding the lymphomas, what happens to that 0.04% who got the lymphoma? 66% were able to get that lymphoma into a remission. So, the odds of dying from it get further still.
What are our odds of colorectal cancer, over our lifetimes as UC patients? They're 5% for CRC, much, much higher than the 0.04% odds of the lymphomas. So, doing nothing is more likely to harm you then not.
Certainly a fair point. I do wonder how much we lower our colorectal cancer risk from taking biologics.
So you had colon cancer? What happened i.e. how was it treated? I guess you're OK now.
I did some reading into the history of colitis a while ago and in the early 20th century the death rate was 30%. In the 19th century it was 60%. I sometimes think we lose sight of how serious the condition is and how important medical intervention is.
That seems surprisingly high. But either way, I've said before we are lucky to have it now vs literally any other time in human history. From 10,000 years ago until like 1900 you were basically screwed if you had IBD.
I imagine at some point in the future there will be a cure or genetic modification to prevent it, but at least it's manageable for most now.
Probably the biggest factor reducing our chances of CRC is that (hopefully) as IBDers we are getting scoped regularly. But there are also some studies indicating that maintenance with mesalamines can be more protective than “immunomodulators, steroids, and nonsteroidal anti-inflammatory drugs”.
We compared body mass index, family history of IBD, family history of CRC, tobacco use, and cumulative and daily use of aminosalicylates, immunomodulators, folic acid, steroids, and nonsteroidal anti-inflammatory drugs.
Aminosalicylate and folic acid use may decrease the risk of CRC among IBD patients.
Our pooled results indicated that 5-aminosalicylates use was associated with a reduced risk of colorectal neoplasia in patients with ulcerative colitis, especially in the cases with a higher average daily dose of 5-aminosalicylates use. However, the chemopreventive benefit of 5-aminosalicylates use in patients with extensive ulcerative colitis was limited.
If the main increase in CRC is from inflammation, I wonder why steroids and immunomodulators did not seem to decrease the risk?
Wonder what it would show if biologics were studied as well
Post Edited (David1991) : 6/5/2019 4:16:43 PM (GMT-6)