Remicade or surgery

I’m having a active flair currently on 40 mgs of prednisone and Balsalazide Disoudium 750 msg 3 caps 3x a day. I also have gangrenosum my Gi feels I should start remicade or consider surgery I bin reading up on some of the risk of lymphoma cancer. Just trying to see if anyone else is in the same boat or was and what they opted do. Ultimately I know it’s my decision and a big one.

Was diagnosed in 2015 with UC
Had 2 flare ups including one Im having now
Have bin on Lialda, prednisone, Balsalazide
Was hospitalized 1x for a wk in 2016
40 yrs old

Post Edited (Cbbjr) : 3/2/2018 3:17:07 AM (GMT-7)

Thank you for the response. I literally just started taking prednisone 2 days ago. I feel better I know I’m not out of the woods yet, I think I would like to try and stay on prednisone and my other meds for a little time and see what happens or see if I could possibly try another stronger drug in the family I’m on. My gastro told me I’m on the weakest drug and dose in the family it’s in. I have heard people taking remicade and heard wonderful things about it just when you see the BIG C word it kinda makes you think a little more.
I’m glad to hear you are doing well after your surgery good luck with your recovery

Thank you will do please keep us updated on your status as well

Prednisone can take a couple of weeks to have full effect. There is still healing that has to happen regardless of what drug you are on. I am on my second biologic, and hoping this one works for me. I initially freaked about biologics, but realized that in reality they are safer than prednisone.

Absolutely remicade, as you might achieve a remission from it (like I did of 1-non-urgent bm a day). Surgery results in 4-6 non-urgent-bms a day in good scenarios and is only needed by 25 percent of uc patients for whom none of the 3 classes of uc meds have worked. 75 percent of us don't need a surgery. We have a large intestine for a number of reasons and it is best to keep yours if your uc can be managed through medicinal means. You've only tried one class of uc meds (there's 2 more left).

Everyone is a bit worried when considering a new class of medications like I was. What helped me greatly was looking at the actual odds of risks versus benefits. The odds of remicade improving your uc symptoms are about 65%. The most concerning side effect of these medications is lymphoma which has odds of 6 in 10,000 (or 0.06 percent) compared to 2 in 10,000 ( or 0.02 percent) for the general population. What happens to those who get the lymphoma? 66% are able to put their lymphoma into a remission. So we're talking very long odds, and hardly anything to loose aleep over.

The Crohn's and Colitis Foundation of America is the source for these statistics and has a good watch/read on risks versus benefits:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

You've only been on anti-inflammatory mesalamine the very 1st class (of 3) uc medications. So, it's a bit premature to talk surgery. With uc, there is an immune system attack that causes inflammation within our large intestine. First, anti-inflammatory mesalamine is tried. If that's not enough then we attempt to slightly weaken the immune system via immunomodulators and/or biologics. If that doesn't work then surgery is last. There's still immunomodulators (imuran/6mp/azathioprine) which is the 2nd class of uc meds. There's also biologics (remicade/humira/entyvio) which is the 3rd class of uc meds.

I've been on remicade since 2012 and have experienced zero side effects. A few of the mods have been on remi for 8-10 years now (red_34 and jubjub).

I’m not familiar with gangrenosum, I’d ask your GI about the risk factors with this and any of your GI’s prior experience with other patients who’s colon looks similar.

If I had a choice I’d go with Remicade, surgery has a long recovery process and may not be worth it at this point in your battle with UC.

https://www.mayoclinic.org/diseases-conditions/pyoderma-gangrenosum/symptoms-causes/syc-20350386

I did decide to try remicade before I had surgery. It didn’t work so surgery it was after that. Looking back I wish I didn’t waste the time on the remicade but hey, you just never know if it’s going to help or not. I’ve been very happy with my surgery results. I have a j pouch....going on 8 years.

I was in a bad flare for 2 years. Tried Humira for 10 months with no improvement. Moved on to Preds with no improvement.

Went into the hospital in October where I was started on Remicade at 10 mg/kg. Stopped the Preds. Reduced Remicade 6 weeks ago to a maintence dose of 5mg/kg every 6 weeks and I am still in remission and feeling great.

I am so glad that I didn't let my fear of the unknown keep me from trying Remicade. If Remicade stops working than I will try every medication possible before I agree to surgery. I have decided that surgery is the last choice for me.

No matter what you decide to do this is a very individual decision that everyone must make for themselves. I wish they could give us some kind of guarantee with the choices we must make, but there are no guarantees when dealing with UC