...But I am mentally struggling with elevating medications to biologics. Once you start on biologics or immune suppressors, I am likely stuck on them for life. What are the long term risks of being on biologics for 40+ years (I am 35 right now). Can we even know? They haven't been around that long. It would be easier to motivate myself if I had terrible symptoms but my doc doesn't think symptom control is good enough. ...
The balance of treatment (and adverse reactions you might experience) against living with some morbidity/risk is a personal decision that patients should approach as active and informed participants. I myself, choose longer slower treatment with mesalamine versus going on thiopurines. I had diabetes and sometime was more prone to infection and slow wound healing due to elevated blood sugar. I also had a history of kidney stones, and with thiopurines you are advise to drink lots of water to avoid kidney stone. I knew this might increase my absolute risk of colo-rectal cancer *slightly*). I did not fully understand it might lead to thickened colon and persistent symptoms in remission. I do have some persistent stool consistency issues and this may be due to the number of years I spent achieving remission.
I have no knowledge that once starting biologics you are stuck for life. I believe this is a false statement. I have read literature where biologics are used as a rescue drug, and then tapered or stopped after a few years. This is not the common practice, but it has been discussed. It is possible because you do not become addicted to the biologics.
Furthermore within 5 and 10 and 15 years there are going to be powerful alternatives to biologics (monoclonal antibody therapy). There will be probiotic solitons, possible SSI solutions, possibly stem cell or other epigenetic solutions ... etc. You will likely switch to one of these. So not 40+ years. Be careful you are not making up false arguments for the "con" side of things.
I think the main question is any family history of cancer, and you personal willingness to tolerate elevated risk of colo-rectal cancer. The practices doctors used are standard of care based on the best average outcomes for the average patient. You should discuss how you individual case might differ from the "average".
I think I would have been more concerned about
Remicade. If I again have to consider biologics, I might be less concerned about
Entyevo. The "What if" questions are important, but they should be as objective and accurate as possible, and not used as unformed fears to paralyze your decisions. Asking the question here is a good start. Evaluate the information you get, and make decisions. Not taking biologics is a legitimate choice - just be aware of the costs as well as the benefits of NOT doing something.
Imagine if I said, what is the long term effect of being on Insulin for 40+ years? What is the long term effect of using new, sometimes toxic, drugs to increase insulin sensitivity? In this case the cost is too much because I die sooner without insulin and other drugs.
If your family risk of cancer is low, if you inflammation is mild, and if you feel you are a less than average candidate for biologic benefit, then don't take them - but do this as an informed decision. color-cancer risk is clearly linked to the duration and severity of inflammation in the colon. If your risk tolerance is high, and you get regular monitoring for pre-cancer dysplasia and polyps, then this seems a reasonable choice to me.