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Uceris - Anyone Try It

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Ulcerative Colitis
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Posted 4/24/2013 3:14 PM (GMT 0)
Received an update from my GI in regards on how to taper. He advised me to take Uceris for 8 weeks and then stop. No tapering.
Posted 4/24/2013 4:36 PM (GMT 0)
Today is day 21 of Uceris. I don't know that I've seen any big improvement, but I think that is my fault. I have been making major diet changes - adding in a lot of Resistant Starches over the past 2 weeks - and I've come to the sad conclusion that they don't agree with me and may be negating the effect of my meds (Uceris + Rowasa + Lialda). Basically, I've added IBS-type symptoms on top of my already painful UC problems. I started slow with the RS, but still ended up with major gas (I mean epic), cramping, bloating, etc. Yesterday I switched to more of a low FODMAP diet, and am hoping that will calm everything down. Honestly, it's already been easier this morning, so we'll see.

As for Uceris side effects, I do notice some minor extra emotions. The blurry vision I was having in the beginning disappeared when I started taking zinc + sunflower lecithin. So, the side effects aren't the issue, it's that I am only seeing minor, incremental primary effects. I'm not quite half way through the 8 weeks, so I'm trying to be patient.

Will post again in a week.
Posted 4/24/2013 8:38 PM (GMT 0)
I've been on Uceris for 2 weeks now and in that time I've had a light period two times that lasted a couple days after already having a normal period the week prior.
Posted 4/28/2013 7:51 PM (GMT 0)
Keeping this bumped.

Any other updates on uceris?
Posted 4/30/2013 2:41 PM (GMT 0)
I've been on Uceris for 4 weeks with no improvement for a UC flare. In fact I have watery diarrhea, a lot of gas and bloating which I did not have before Uceris. As of March, 2013, Uceris is approved for treatment of UC so most insurance should cover it. It cost me $17 for 30 9mg. tablets.
I'm seriously considering discontinuing though. Good luck to all!
Posted 4/30/2013 3:12 PM (GMT 0)
If you look at the drug information about it, the success rate in their studies revealed a relatively low overall improvement rate yet the drug was put on the market anyway. Although it has helped me so far, it took me a few days before I felt it was worth it.
Posted 4/30/2013 9:48 PM (GMT 0)
Today is the half-way point (4 weeks) on Uceris. I am still feeling pretty awful, but marginally better than when I started it. Lots of bloating / gas, which impedes the retention of Rowasa at night, and still Blood and M and Pain, albeit less than before as far as I can tell. The last few days have been marked by frequent and watery D and lots of cramping. I'm trying to eat as little as possible and limit to only friendly foods.

I was expecting more benefit at this point and am unsure what to do. I have an RX sitting in my drawer for Pred that the GI gave me just in case, but I also kind of want to see it through in case it works then I'll know what to do next time. So annoyed at this stupid flare and its impact on my life! Every day I keep hoping that maybe I'll turn a corner from feeling bad most of the time to feeling ok most of the time. I'll post again in a week.
Posted 4/30/2013 10:44 PM (GMT 0)
Most of the treatments actually have a fairly low percentage of success. That's why most people go through several drugs before finding something that works and then that works for a few years at the most. Prednisone probably has the best remission rate of the harder drugs but you can't take it long term and the higher success rate is only a rate while taking the med and not after tapering off and being on nothing else.
Posted 5/1/2013 12:37 AM (GMT 0)
I stopped taking it last week. Was giving me really bad d (and d typically isn't a uc symptom for me). It also caused my reflux to flare.

I'm not exactly sure what I will do next. I should probably let my gi know I stopped taking it. I've taken a lot of meds ( basically everything!) this is the first one I only gave a month. I usually try 2-3 with everything else.
Posted 5/3/2013 6:29 AM (GMT 0)
Hi everyone. I'm new here, just started taking Uceris on Monday (4/29). I was diagnosed last year in Feb with IBD, though doctors are still arguing over whether it is Crohn's or UC. Either way right now I'm having issues in my colon. Started Remicade last July after being hospitalized, also did about 10 months of Prednisone, which was both a miracle drug and my own personal hell. Anyway, finished my pred taper in February and started flaring again, this time with extreme fatigue and joint pain to go along with belly aches and urgency. Saw a new specialist on Monday who put me on an 8 week course of 9mg Uceris, as well as starting me on 100mg of 6MP to go along with my Remicade every 6 weeks. I still feel terrible; headaches, fatigue, joint pain, belly aches, but the urgency has died down slightly. The second day I was on it I actually started having constipation with the extreme cramping... Now I go back and forth between not being able to go and having to go too much. I just wish I had my energy back. But at least with the Uceris I haven't noticed any of the horrible side effects like the pred had.
Posted 5/4/2013 4:11 PM (GMT 0)
I am quitting Uceris today. It is giving me relentless D, to the point of not being able to sleep or leave the house. I am really disappointed, I wanted this to be my go-to flare drug. I made it 4.5 weeks. I'm going to wait until it clears my system and see how I feel, will consider starting pred if necessary. I am in so much discomfort, it's really terrible, plus I'm totally dehydrated and shaky. Booooo.
Posted 5/4/2013 5:02 PM (GMT 0)
^It gave me terrible d too. It took about 48 hours after my last dose for the D to stop.
Posted 5/4/2013 7:43 PM (GMT 0)
I am still taking it and doing well.
Posted 5/4/2013 8:55 PM (GMT 0)
me too, enjoying Uceris. It's been about 5 weeks now, & things have definitely stabilized for me. Granted, my UC wasn't bad to begin with, day to day symptoms were pretty manageable. I don't know how good it would work for someone in the middle of a bad flare, but for those of us who experience ongoing low-grade inflammation, bleeding & urgency... it seems to really help with those issues. I haven't had any side effects such as diarrhea or nauseau. To me, it's the same thing as a steroid enema, only administered differently. Those alone are not likely to pull you out of a flare, but if they are used daily in moderately active UC, symptoms noticeably improve.
Posted 5/5/2013 1:25 AM (GMT 0)
Im taking uceris with 20 mg of pred (slowly tapering) and its working fine for me besides a little bloody spotting in the morning, but the rest of the day is fine for me
Posted 5/5/2013 1:51 AM (GMT 0)
3 weeks on Uceris. Only 1 or 2 BMs in the day. Drinking/eating whatever I want...even drinking coffee😳.
Reason for post is because ive had a throat cold now for two weeks and just came down with a yeast infection. I never get those. I strongly feel Uceris affects my immune system.
Posted 5/7/2013 3:36 PM (GMT 0)
Started Uceris Monday 5/6/2013. Two doses so far. First dose gave me a little dizziness, slight headache, and a little gas, bloating, cramping. I haven't seen any of these side effects after the second dose. Doctor prescribed in response to a developing flare one week out from next remicade infusion. If it doesn't catch the flare, or makes it worse, he will prescribe pred. instead. I typically flare a bit at week 7 of my 8 week remicade cycle, but worse this time. Moving future infusions to 7 week cycles. I will update my experiences as they occur, with emphasis on the next few days leading up to my infusion on Sunday, as well as the week afterward when I should be bouncing back from remicade anyway.

Currently taking:
6MP 100mg, Remicade/8 weeks, Lialda x2, prilosec 40mg, Canasa ~x5 weekly, Uceris 9mg
Posted 5/7/2013 8:46 PM (GMT 0)
Zigzag - my apologies for getting off topic but I notice you are taking pretty much the same drugs as I have just started. The Remicade and Lialda were not enough to keep me out of a flare once I tapered off Pred so last week I started 100mg of 6MP and Uceris. My flare symptoms have pretty much vanished but I'm nauseous on and off throughout the day and pretty fatigued and get frequent headaches. My question is did you get used to the 6MP after being on it a while? Does it bother you or have side effects?

And going back to the point of the thread, a week on the Uceris and I love it. My guts are feeling great so far with none of the nasty pred side effects.
Posted 5/8/2013 1:25 AM (GMT 0)
I started 6MP roughly 8 months before my doctor added in Remicade. He says that for many people the two drugs won't work very well unless they are working together, both because of their therapeutic effects and because 6MP helps to prevent your body from building immunity to Remicade, so this could end up being the case for you. I experienced a notable improvement after starting 6MP, but after I tapered off the pred., it wasn't enough. Since you just started 6MP, you probably won't see much of a change for a few months because it takes awhile to enact a change in your immune system. I don't remember experiencing the symptoms you mentioned when I started 6MP, but my doctor started me on 50 mg for a week, then 75 for two weeks before setting me on 100mg indefinitely, so it may have allowed my body to ease into it. My dad takes it as well, and he has a little nausea in the morning with it. Are you convinced it's the 6MP that's making you feel like that and not the Uceris? You mentioned you started them at the same time. Those sound like the symptoms I got when I started Uceris yesterday. They hit me here and there throughout today in a minor fashion, but nothing too bad. I do think I feel a little improvement, but I guess I'll have to wait and see in the morning. Keeping my fingers crossed. Also, are you noticing any of the pred.-like symptoms with the Uceris? I feel like my appetite is skyrocketing and I'm a little jumpy.
Posted 5/9/2013 6:11 AM (GMT 0)
Yeah I had the same thing only in reverse. I was hospitalized for a bad flare and put on remicade and 80mg pred. I was almost instantly better. Took about 9 months before my old doc would let me taper off steroids and start lialda again. Stayed on remicade the whole time and felt great until about 20mg of pred, things started going way downhill. New specialist thinks like you said that the remicade really needed the 6MP to do it's job right. So it's been a week and a half now and you could be right, it could be the uceris making me nauseous. What I do is take uceris in morning right after breakfast and then 6MP every night after dinner. I find taking them at night helps with the effects. And no side effect from the uceris yet, slightly jumpy heart here and there and need to keep an eye on blood sugar levels cause of crazy diabetes brought on by pred. But so far so good. I thought the fatigue and nausea were all from the 6MP.
Posted 5/9/2013 1:26 PM (GMT 0)
Day 4 on Uceris. The signs of my flare are pretty much gone. Not sure if it is because of Uceris or not. I can at least say Uceris has not had any noticeable negative effects.

EDIT: I now believe that I'm having some mild bloating on my left side, with a little random D that doesn't feel like it is UC-related. Also, a little rectal burning that I haven't experienced before.

Post Edited (zigzag) : 5/9/2013 2:25:32 PM (GMT-6)

Posted 5/12/2013 6:32 AM (GMT 0)
I have a 16 year old who has uc she is also handicapped, her dr wants to put her on uceris we have insurance and they still want $380 for a month of it,I found the website with the $25 discount card but when my pharmacy went to put it through they said because she is not 18 she isn't covered..is there any other discounts out there???
Posted 5/12/2013 7:36 PM (GMT 0)

dontscopeme said...

Andrina said...
I can deal with the puffy face and I sleep intermitted anyways. But yes I will never go back to pred once this taper is done. It will always be Uceris from now on. I'm feeling so much better.

Not to sound like a jerk but what about the Aza and Apriso you're taking? I'm taking prednisone right now with mesalamine oral and I find it hard to distinguish what's doing what. Are Azathiopurine and Apriso just something you are taking for maintenance which you'll end up stopping for just Uceris?

Sometimes with how varied this disease is for everyone, it's hard trying to find someone who I can relate to. I'm two drugs off of having same the same treatment plan as you right now, lol. What were symptoms like throughout your current flare? Mine seems to be bleeding predominantly.

Thanks


Apriso has only helped me in the beginning and it stopped having effect. Aza hasn't been working back in 2006/2007 my GI just wanted to try again.

My symptoms were cramps, d, blood and mucus.
Posted 5/15/2013 5:51 PM (GMT 0)
Just wanted to chime in on Uceris results. My daughter who is 17 has been in a flare. Bathroom run every 1.5 to 2 hours, little blood and either watery or loose stool. Started Uceris about 7 days now and there seems to be light at the end of the tunnel. Urgency down to about 6 times per 24 hours and alternating dia. and semi-formed stool. Our doctors here in NJ as well as at Cleveland Clinic had no experience with Uceris so we were pretty much the first. Covered by our Aetna plan expect for small co-pay. Currently on Imuran and twice daily Cipro for awhile. In the past pretty much steroid dependent so this seems like a better solution if it holds.
Next we have to deal with the recent Lyme and Babesia diagnosis, but had to get her flare under control first.
Posted 5/15/2013 7:40 PM (GMT 0)
Hi. New member. I am a type 2 diabetic and I've had Pancolitis since 2001. Along with my 3 400mg asacol I started the 9mg Uceris this morning. Pred really does a number on my diabetes(along w/ face and mind), yet during all my almost yearly hospitalizations I am pumped full of it and sent home with an awfully long taper. Life has been tough. I ain't crossing my fingers here though. I am hoping it stays localized. I can't find any studies with diabetes and Uceris. I just woner how bad it will raise my sugars. My GI and his PA are trying to kee me away from Pred. Alas ...who knows. Boy, do I have two bad bad diseases that fight each other.
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