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Starting Uceris...need advice/wisdom

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Ulcerative Colitis
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Posted 4/15/2015 12:35 PM (GMT 0)
Hi everybody,

I'm feeling very disappointed today.
Been actively flaring since January, I had one week in March where I thought I was in remission...NOPE! So I've been on the cortenemas and the highest dose of Lialda for about a month now. I THOUGHT I was healing and then about 2 weeks ago I suddenly started getting small bouts of diarrhea and this lingering cramping (I can only liken it to intense menstrual cramps) that would come and go. This diarrhea/cramping symptoms are totally new for me and developed overnight, and they really freak me out because I'm afraid it means that my colitis is progressing higher up. Is that what it means? Or does it just mean this flare is really active? Does development of new symptoms like this usually mean your disease is getting more severe? The bleeding has significantly gone down and I have had legit NO weight loss (unfortunately LOL) so I'm hoping that it means I'm not truly getting 'worse.'

My stool culture results just came back, no infection/parasite (I was actually hoping it was an infection). So now I am about to start on Uceris. Never taken it before, I'm praying it works. Because apparently the highest Lialda dose and the Cortenemas aren't powerful enough to get this flare under control. Have other people had luck with Uceris? Any side effects I should look out for?

I'm so discouraged. I'm so afraid I'm going to be one of those cases that starts out "just as proctitis" and then gets worse and worse and worse. I've always been kind of a 'worst case scenario' thinker in my head, probably doesn't help my colitis.
sad
Posted 4/15/2015 1:48 PM (GMT 0)
Obviously everyone's body is different but I have only had good experiences with it! For me Uceris has been an amazing "get out of a flare" drug. In fact it was, by chance, the first steroid type I was given after a visit to the ER. My GI doctor was surprised since it was "so new". But like I said I felt better after a few days and within a few weeks I started feeling close to normal. I tapered off of it under my GI doctors instruction and I was good for a while. Now anytime I start to drop into a flare and it looks like I can't fix it myself Uceris seems to be what is used to get me back on track.

The only side effect I noticed is that it pepped me up like a jolt of caffeine after I took it. Most of the ones listed sounded a lot like the normal possible side effects that could happen with a steroids. Also note that there are some interactions with some foods so make sure to read the information on it!
Posted 4/15/2015 1:53 PM (GMT 0)
I also tend to be a worst case scenario thinker and yeah, it doesn't help, but anxiety seems to go with UC. I try to remind myself that worrying about what-if's doesn't actually help prevent anything in the future but only makes me feel scared now. When I am able to remind myself of that (it's not always easy!) the anxiety over that specific thing sort of fizzles out :-D.
Posted 4/15/2015 2:40 PM (GMT 0)
Uceris works incredibly well for me - it usually starts working within 1-3 days. It isn't as powerful as prednisone, but it works almost as well (for me) and has far fewer side effects. Actually, the only side effects I have are some mild steroid withdrawal effects after I stop taking it - fatigue, mood swings/depression, etc (but FAR more mild than those I get when I taper off of pred).

Good luck - I hope it works as well for you as it does for me.
Posted 4/15/2015 6:13 PM (GMT 0)
The first time I took Uceris it worked really well -- I called it a wonder drug! I was back to pretty much normal within 2 weeks and had zero side effects. It didn't work as well when I had to take it again though -- don't know why.
Posted 4/15/2015 9:24 PM (GMT 0)
Thank you everyone so much for your advice and encouragement! I was nervous to start this just because my doctor referred to it as a "stronger medication" which just sounded scary (there is a bit of a language barrier). So thank you everyone, I'll keep you posted on results!
Posted 4/16/2015 8:07 AM (GMT 0)
Yesterday I answered you on this but my post got lost because the website logged me out.

I can only tell you how it is like for me. I can usually tell how far my inflammation spread depending on the pain. However the cramping is a "normal" symptom of UC. It doesn't have to mean that it spread but it could simply mean the ongoing inflammation has gotten worse.

I'm glad you're taking Uceris. It helped me when 60 mg of oral Prednisone couldn't. What's your doctors plan for keeping you in remission after Uceris? I see you're on Lialda but apparently it didn't cut it.
Posted 4/16/2015 4:26 PM (GMT 0)

quickksand said...
Thank you everyone so much for your advice and encouragement! I was nervous to start this just because my doctor referred to it as a "stronger medication" which just sounded scary (there is a bit of a language barrier). So thank you everyone, I'll keep you posted on results!

Stronger medications are nothing to be afraid of. Stronger medications likely means immunosuppressive medications are next (imuran, 6mp, aza). Ulcerative colitis is caused when your immune system attacks the lining of your large intestine, causing inflammation that results in diarrhea, blood in stool, urgency, etc. Your lialda and rowasa are anti-inflammatory medications. If it isn't strong enough then immunosuppressive medications are tried next. White blood cells are your immune systems attack dog, they cause inflammation. Imuran/6mp/aza reduce the amount of white blood cells in your body, so less inflammation can be caused in your large intestine, and therefore less uc symptoms. Regular blood tests are needed to ensure your white blood cell count doesn't get too low, it's weekly at first, reduced to biweekly, monthly, and then finally trimonthly.
Posted 4/16/2015 7:18 PM (GMT 0)
Uceris did not do much for me. It took the edge off of the cramps and the pain, but seven weeks later I had a colonoscopy and there is still inflammation in the sigmoid and pain. I was extremely tired all the time and had pretty chronic headaches. It seems to be working for many people though. Hopefully it does for you too.
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