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Pred not working, try uceris before remicade?

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Ulcerative Colitis
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Posted 4/20/2013 5:54 AM (GMT 0)
I have been on pred 40mg 2 weeks and 35mg 2 weeks, with no change. Was on steroid enemas for week then switched because could not keep in so on cortifoam for past week. Had diarrhea with asacol and lialda. Dr wants me to go on remicade, but I am nervous as this is my first flare and where I will go after this?

Another forum member suggested uceris, has anyone tried uceris after pred not working?

Also started vsl#3 tonight, one packet
Posted 4/20/2013 6:10 AM (GMT 0)
I would try everything before getting on Remicade. It can cause a lot of severe problems and once you're on it, you're on it...of course, until it stops working. Seems like you should be on Prednisone 40mg until it slows things down. You shouldn't be weening off before it's done it's job. I'd add L-Glutamine and Slippery Elm, asap. These help your body heal itself, especially the intestinal lining. I'd eat a bland, no gluten, no dairy, no corn, no soy diet. Lots of water, no caffeine at all, etc. That's just me though. My doctor has been pushing Remicade for 10 years it seems and I've only had a few flares. I feel like such a serious drug should be reserved for when it's super serious and for when nothing else works. Good luck with whatever you choose. :)
Posted 4/20/2013 11:48 AM (GMT 0)
I have no experience with Uceris but it is designed for mild to moderate UC and I honestly doubt it would work if 40mg pred does not. Depending on how rough your flare is now then the choice might be between Remicade and surgery if you are not responding to pred.

And Remicade won't be the end drug forever, we have new biologics in the pipeline.
Posted 4/20/2013 12:01 PM (GMT 0)
igotthis,

I too, like bluechair, would suggest you try certain supplements: probiotics VSL 3# is a good one, slippery elm powder, l-glutamine powder, diet modification by eliminating gluten and dairy,

what about your vitamin d3 levels?

Prednisone did nothing for me, and i was intolerant of the mesalamines.

And I didn't want the big guns like remicade, so I found another way.

If you are interested, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

Posted 4/20/2013 2:07 PM (GMT 0)
You are all so helpful...thank you. I am researching another dr today, they a friend of a friend thing.

I have diarrhea this am, have not had for couple of weeks. Took vsl#3...anybody else get diarrhea from it? I don't want it to be the vsl!
Posted 4/20/2013 3:00 PM (GMT 0)
Uceris did what 60 mg Pred could not do for me. Finally my bleeding stopped and I have rarely any symptoms anymore. Even my pain has gotten better. Good luck!
Posted 4/20/2013 3:01 PM (GMT 0)
If VSL doesn't work for you, you could try another probiotic as well. I use Dr.Ohhira's probiotics and they work great for me.
Posted 4/20/2013 3:14 PM (GMT 0)
Don't stop the VSL. Die off of bacteria can cause diarrhea. Stick with it, do half a packet if you really cant' tolerate it, and work up to a whole packet and then 2. Everything takes time. I've been on Uceris for 5 weeks and I'm just now getting better. You really can't make quick judgments about meds or supplements. You have to give them time. Diet is huge, too. If you haven't already changed yours, I'd do that next.
Posted 4/20/2013 4:12 PM (GMT 0)
I did one whole packet last night ill try a half tonight. My diet is totally messed up right now, but i am doing low fiber and no dairy. Have not conquered the gluten free thing yet. Was going to go to local health store this am, but can't seem to stay away from the bathroom. Want to try the slippery elm and l-glutathione. I have liquid vit d, need to take more regularly. It is so hard to fit all these meds into the day.

Bought sunflower butter, tastes good! Bought frozen spinach, haven't eaten it yet, kind of scared to.

I started all the testing for the remicade, but I am going to ask for a script for uceris on Monday from my doc, called is office today, closed....was worth a shot.

Don't want to start too many things at once since I won't know what is helping or not helping, but I feel like I am running out of time for trying things. Atleast my patience for things to work is wearing out. My kids have been watching cartoons all day while I run to the bathroom, feel so guilty they want to do stuff, I want to curl up in a ball in bed. My five year old is asking when I will get better and why Am I always sick, even coming up with her own stomach aches.

Sorry that was a little whining right there.
Posted 4/20/2013 7:49 PM (GMT 0)
Been on Uceris for over a week and a half taken with 6 asacol hd and I was able to run a 25k this morning and didn't have an urge once during the race! I was going 20 times a day a couple weeks ago with bloody stool. I couldnt even think of running a mile in my condition. If your insurance will cover it I would consider uceris first. When I suggested remicade to my dr they said there are other options to try first. Just my two.
Posted 4/22/2013 11:34 AM (GMT 0)
Didn't take vsl last night just woke up and did my usual immediate bathroom run, good news! Had less blood for second day, and stool more solid, passed small amount without pain. I think the probiotics were helping but system can't handle them, maltose? Gonna run to local health food store see what they got and look at ordering vsl #3 capsules. Too bad I got almost $200 worth vsl in my fridge wish I new someone could use it.

Gonna get some l- glut amine and slippery elm...hopefully I can leave the house today. Gonna call dr too ask for uceris and put off remicade for a bit and let this play out.
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