from turmeric to remicade

hello everyone. quick history, was diagnosed with UC back in 2006, mainly limited to distal end. on colazal at first then switched to lialda. had to stop mesalamine in 2015 due to uptick in creatinine and what looked like interstitial nephritis on ultrasound. they did another challenge dose in 2017 and cr shot up immediately. so since 2015, i've been on turmeric only and have had no flares since. scope last april showed clean colon and even the biopsies showed no histologic evidence of UC. I deployed to afghanistan in october, we had lots of stressful situations and I believe that's what started this recent flare. a few weeks ago, noticed blood streaks on the stool. they tried steroid suppositories which did nothing, the bleeding/mucus/urgency increased. sent to Landstuhl for a colonoscopy which showed extensive ulceration/friability/erythema/edema in rectum and 25cm up sigmoid. some isolated erythema/edema/friability but no ulceration in descending/transverse/cecum (none in ascending). they started me on ulceris foam. they are now talking about starting remicade which seems like a huge leap forward to me. would it be better to start with systemic steroids? or can I just try the foam for now and see if everything calms down? I know the foam won't reach beyond the sigmoid, but i'm thinking that being removed from the downrange environment will help. plus, it'll target the most problematic area at the moment. sorry that was a mouthful (typeful), thanks for any comments/advice!

Remicade is scary because it is different than what we are all used to. I am quick to give advice to others but I don't know what I would want to do if I were you. I don't think uceris will work. It's track record is poor. Systemic steroids have known terrible side effects, many irreversible... but they work in the short term. Remicade also has some serious side effects, but most seem to be reversible after discontinuing the medication. Might work or might not. You might get lucky and be someone who gets 10+ years of remission from it. I am less afraid of biologics than I used to be since I now know several people who take them.

Good luck with whatever you choose. There are no perfect choices with this disease so you just have to accept that, decide, and live with your decision.

Thanks Sarah for the positive reply. I’ve been on the uceris foam for only three days and so far have noticed some decrease in bleeding/mucus and a definite reduction in frequency. It won’t address the cecum/transverse obviously, but I’m going to see if they can put me on PO budesonide for that. Plus, I’ll continue my turmeric and introduce boswellia. Hopefully combined with the fact that I’m out of the offending environment (Afghanistan) these measures will get things back under control. I plan on getting another scope in a month or so to see if things have improved.

Sara I actually loved uceris when I was on it. I had so much energy! I was in remission at the time so hard to say if it was effective for me. Glad it is working for you.

I was only referring to the low remission rate (less than 20%...15-17% if I remember right) and that is in mild to moderate cases vs. humira which is tested in those already refractory to other medication and are moderate to severe cases. Tough to compare since not apples to apples.

Either way I wish you and the OP success with it.

Sevodreams, have you read this? It is a relatively large collection of supplemen and diet studies for UC.

https://www.dietvsdisease.org/ulcerative-colitis-diet/

Thanks for the replies guys. Started the foam last Friday, some mornings have been less blood after holding it in. Some others have been like I wasn’t on anything. Started the budesonide by mouth a couple days ago, hopefully that starts working soon. Have been on turmeric (one capsule Turmeric Force) this whole time and am going to start boswellia when I get home in a couple days. Hoping for the best!

Give the budesonide another week or two. I saw improvements from it in 4 days, but I know it can take longer sometimes.

Oh, I see. Ok, I'll look up more about curcumin -- thanks!

Sara, so far I’ve had some decreased frequency but there’s still blood in the mornings and throughout the day. Maybe a little less mucus. I’m hoping this means that it’s starting to work. Is bleeding perhaps one of the last symptoms to resolve? I’ve been on the uceris foam for a week and the oral budesonide three days. Maybe just need a little more time?

Sara14 said...

Uniform Charlie said...
I don't think uceris will work. It's track record is poor.

I always thought that, too, from reading this forum. But it's working for me right now. And I wish I had given it more than a few days to work years ago and I probably would have avoided having osteoporosis from prednisone now. I've read the trials on Uceris and they aren't any worse than most the other UC drugs out there in terms of effectiveness, so I don't know what you are referring to when you say it has a poor track record. Most of the UC drugs have really low efficacy rates. Humira was about 20% in the clinical trials.

Just in case this has not been mentioned for those taking turmeric/curcumin: the supplement forms that are hydro-soluble will absorb better. There are many challenges for turmeric to be absorbed well in the intestinal tract.