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Biologics and moderate Crohns

Sat, May 18, 2019 2:37 PM

My condition has progressed to moderate from mild (treated successfully with Pentasa; but unfortunately I stopped the Pentasa and lesions returned on a subsequent colonoscopy). First diagnosed in 2015, however, I believe I have had this my whole life but it flew under the radar so to speak. The dilemma I am having now is that my gastroenterologist wants to put me on Stelara to manage my moderate status. I suspect that his diagnosis barely qualifies as moderate in my discussion with him. I am virtually asymptomatic: no cramping or bleeding, sometimes I have gas/bloating but really dependent on what food I am eating (he also tells me I have irritable bowel syndrome), no pain, good appetite, heathly weight and in great health otherwise. As a health care professional, I fully understand the possible progression of the disease that can potentially arise with time and an ageing body BUT I am struggling immensely going on a medication for life (which is extremely expensive) and the potential consequences of using this drug for decades (do we have a 20, 30, 40 year longitudinal study for Stelara?) I have a healthy skepticism for the pharmaceutical industry and truly understand how that will affect their future revenue with large number of patients taking this drug for life. I also understand that biologics maybe a life saver for many patients and I am sure that the risk of taking this drug for life greatly exceeds the risk of living with a severe condition. But that's not me. I am getting significant pushback from my gastroenterologist telling me that I am not making the right decision by not going on this drug. I want a dialogue with my physician not a lecture. Also, was blown away when I received a telephone call from the drug company "concierge" to help me start on my journey on Stelara. Red flags were raised. So does anybody have any advice for me where I am at? Just worried all around either taking the medication or not taking the medication. Also, really wanted to try Pentasa again as that was successful for me when my condition was considered mild but my GI said no. Basically, totally confused...

docbuffalo
Joined May 18, 2019

Mon, May 20, 2019 9:26 AM

Reply posted for docbuffalo.

Most of these drugs are too new for longitudinal studies, but all the evidence suggests they are relatively safe. That's the key: RELATIVELY. I had to understand that I was going to have to do something for long-term care, or else I would lose my J-Pouch and have an ostemy, which I am not ready for.

I have failed remicaid and stellara. My experience with remicaid was I felt better than I'd ever felt--arthritis went away, pouchitis resolved...But I developed anitbodies.

Now trying entyvio.

Best of luck!

Ethan
Joined May 18, 2019

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