Advice on medication?

[GingerGirl]

About a month ago my GI decided I should try prednisone. He put me on 40 mg/ day plus the Lialda and told me to start tapering once I felt completely normal, but I still don't feel normal. I'm better but still having stomach pains. I'm worried that if I'm not at normal now I won't be when I start tapering down. Any experience with this? Also any idea how long it takes to get rid of the puffiness I've gained with prednisone? Does it start to go away when the tapering starts or not until the prednisone is completely stopped?

When I was first diagnosed I tried to stay optimistic that I just needed to get the right medication so I could get better and get back to living my life but now I'm very worried about getting back to normal activities which have been stopped for months now. The GI doctor told me at the last appointment that he wasn't sure what I would do next if the prednisone didn't work. He mentioned that the next step would be a drug that had a significant risk of causing causing cancer as a side effect and at my age (35) he said I was too young to risk that. My next follow up appointment is next week so I'd like to be prepared. Any advice on what the next medication would be so I can look into it?

 

[Clash]

I'm so sorry to hear you are struggling. The puffiness may start to dissipate while tapering but does often take until you are completely off of it.

As per your docs comments for the next step in meds I'm not sure what to say. Immune modulators like Imuran, 6mp or methotrexate could be next or biologics like remicade or humira. There is a slight increase in cancer risk but not in any significant. The risk of HSTCL(a cancer) is 2 in 10000 for a non IBD person, with the meds the risk goes to 4 in 10000. You take risks everyday. Have you ever looked at the risk of fatal injury from a car accident? I'm not saying the risk isn't there just that you have to compare the benefit to the risk. Untreated or uncontrolled Crohns has serious risks too including bowel cancer.

A second opinion may be in order because another professional set of eyes and advice can be very helpful and no downside.

My son was 15 when he started remicade, a biologic, he had to add methotrexate 6 months later. His quality of life was 10 fold better on these meds. It was scary to think about but honestly I'd take these meds over the fear of uncontrolled disease and his poor quality of life beforehand.

He has since moved to another biologic, Humira.

They do regular blood work and he's had no side effects and he is able to enjoy life as a soon to be college freshman since he is 18 now.

Good luck I hope you find remission soon.