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HELP! May be flaring and need to take something other than pred

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Ulcerative Colitis
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Posted 1/10/2015 6:16 PM (GMT 0)
Hi there!

Did the antibody test for remicade back in November and they found a small amount, not a ton but still present. Since September I've noticed occasional specks/streaks of blood in stool and occasional mucous; sometimes the mucous has some blood in it. Since it was sporadic I never paid too much attention and just tried to do the next best thing to keep my body healthy (yoga, healthy eating, keeping stress-levels down). During my last remicade infusion on Thursday my infusion nurse said if there is any blood at all I'm not in remission since inflammation is still present. I haven't had any other symptoms though. No fatigue, I haven't lost weight, no urgency expect when I actually have to go or diarrhea. My frequency has also stayed the same (anywhere up to 4 times a day) since August. Stool is usually very formed with fluffier edges.

I have an appt with my GI doc on Tuesday to chat about this, but I wanted some opinions before I went in. I'm thinking that if this has been a continuous minor flare she'll recommend prednisone to kick it. I cannot take that drug again. It made me crazy and I work in a field where I can't lose control of my mood. It's not a stressful environment, but you need a level head. Since I'm not showing many other symptoms of a really bad UC flare, is there something else I can ask for her to try? What is out there that works to calm inflammation so I don't need to deal with the terrible pred side effects?

I'm sure she'll want me to switch biologics since I'm developing antibodies, but I'd rather not go into full-on flare in between biologics if I don't absolutely have to. My sister is graduating college in May and our family is taking a trip to France to celebrate--if I have to miss all of that because of UC I will never forgive myself. Any encouragement/ideas would be helpful!
Posted 1/10/2015 6:46 PM (GMT 0)
Hey Colorado,

Have you heard of Uceris? I have never taken it, but it's supposed to be a steroid that is less systemic in nature... aimed more at the gut. That might give you a shot at less emotional changes if you need a steroid of some sort.

I've noticed after being on prednisone a good 4-5 times in the past 11+ years with UC, that if you really pay attention to yourself you can control your outward appearance even if you are all over emotionally. It takes practice, but it's not too hard... and would allow you to heal up if necessary.

It's hard to say if you'll flare badly if you switch biologics. One time I briefly delayed a Remicade infusion and flared intensely within a week. Another time I did just fine in that same time period. I am now off Remicade (87 days past due for an infusion) and have not flared. I'm doing a specific diet, and taking supplements.

Something else to ponder... only when you have time to breathe/relax and not stress... just read a little on the potential for gluten sensitivity causing some issues. Right now I'm gluten-free (maybe a trace here and there, but making a concerted effort)... and I think it helps. After stopping Remicade my colon began to hurt fairly bad, but once I got eating like this the pain went away mostly.

Your situation sounds manageable to me, if that helps you feel better. I'm getting to be a veteran at this... so hopefully I'm a credible source for you! ;-)
Posted 1/10/2015 8:12 PM (GMT 0)
I agree with Thoreau, uceris may be a great option for you. It is like pred but it's delivered only to the colon so it doesn't cause all of the side effects. It may give you mild side effects but nothing like pred from my experience. I also think changing biologics is a good option but i don't know if you want to jump the gun if you're still feeling fairly stable and the blood work doesn't show a major buildup of antibodies. It is something to consider though and it could keep you off pred if it comes to that.

Good luck at the GI.
Posted 1/10/2015 9:23 PM (GMT 0)
I am not sure the GI would want to do steroids for a mild chronic flare. You don;t say if you are on 5-asa, or if you take an immune suppressant with the Remicade. Hard to advise without much info.

If the inflammation is sigmoid or rectum, you could try a topical steroid enema - but again if not flaring big time, may be better to do 5-asa rectal med.
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