pez927 - yes, the warning labels are scary. I've struggled with this decision in the past, also.
I started taking Remicade in 1998. It was that drug plus the immunosuppresent purinethol. Took it until 2006 when I had an allergic reaction to the Remicade. (With that one, most people will eventually have to stop because the body builds up an immunity to it.) While on it, I had no noticeable side effects. I did have one minor flare in 2004 that required a steriod boost, but Remicade continued to work after that for 2 more years. I didn't get any sicker than any previous cold/flu seasons.
At the time, I was given an option to switch to Humira. It was really the only other biologic at the time without getting onto a recent 3rd one that the doctor had little experience with or a 4th and 5th one that was available if I joined a university study (which means I could have also received a placebo). The growing concern (in my mind) about
side effects and the fear that I was on the edge of available drugs led me to not switch to Humira at that time. (For example, what if Humira didn't work, then I'd have nothing to do except participate in studies of unknown drugs?!?)
So, at that time I switched to purinethol + pentasa. That seemed to generally work for me for about
3 years. I had a flare in late 2009 and again in late 2010. Following those two flares, my stricture was so narrow that prednisone wasn't helping. I switched to Humira in March 2011 just prior to my one & only small bowel resection. I continue Humira as a maintenance medication & have now been on it alone for the past 4 years. Just like the Remicade, I have had no noticeable side effects on Humira. I have twice in the past two years had a sinus infection bad enough to require a visit to my GP and received a 5-day dose of antibiotics.
So, has the Humira or long periods on other immuno suppresents weakened my immune system? Or is it environmental differences? The other difference is that (1) I now have two young elementary aged children, bringing home all sorts of germs and (2) I volunteer in a church preschool programs on Sunday mornings. So, I'm exposed to a lot more stuff in the past few years than I was a decade ago. And, my kids get sick a lot more than I do. I only catch a fraction of the stuff that they get, and usually anything I do catch runs less severely though me than it did through them. I'd conclude, that generally, being in remission from Crohn's on the immunosuppresent drugs has helped me to stay healthier and more immune to other germies floating around.
In 12 of the past 17 years, I have been on either Remicade or Humira. Those drugs have kept me in remission during the periods I was on them with little-to-no short-term side effects. I guess there is a small possibility that a very rare cancer could be slightly less rare (but still very rare) for those of us on Humira long-term.
When first facing this decision in 1998, the potential benefit of good health in the short-term, which has now stretched out over most of the past 17 years, outweighed the risk of other long-term problems. As beave noted, there are other known, proven and experienced long-term problems from other common Crohn's drugs like prednisone. I'm having to face more and more of that over time. I was never consistently on prednisone long-term, but before the biologics I had frequent flares. The longest time I'd go between flares was 24 months, though 6-12 months was more common.
Good luck in your upcoming decision!
Diagnosed in Feb 1989 at age 14Just diagnosed, worried about future?Tips on recovery from 1st surgery
1 Resection: 4" at terminal ileum + 24" of jejunum - June 2011
Current med: Humira (since Mar 2011)
Also take: monthly B12 injection, Calcium, Multivitamin