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Just finished Uceris...now what do I do?

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Posted 6/25/2013 10:18 PM (GMT 0)

Just took my last Uceris pill yesterday after doing a small taper and I'm so scared.  Supposed to leave for a 3 week RV trip out west with my family and I've already had the return of 3 strong urges and I am extremely tired.  When I say tired it's like I have to try soooo hard just to pick up a few toys or have to sit and think about picking up a plate or cup.  My finger joints have been hurting since I got on Uceris so hopefully that will fade away. I'm starting to worry I might be getting RA but spouse thinks it's a side effect of Uceris. 

Life has been so amazing these past 2 months and now the fatigue and the returning urges...ughh.  So depressing to think about. cry   

What am I supposed to do know? Just keep taking Asacol?  Anyone else ahead of me in their discontinuation of this new drug?  Thanks.

Posted 6/25/2013 10:31 PM (GMT 0)
cross your fingers! I wish I had better things to offer, but sadly.... I finished my 8 week course of Uceris about 1 1/2 months ago- while on the med, I was great. Less urgency, no bleeding, more formed stools, and less overall bathroom trips. Within a week of stopping, things were back to my (ab)normal routine. I wish it was a maintenance med. And to complicate things, I had to switch to Delzicol due to Asacol being discontinued- made me so constipated & nauseous, such horrid indigestion... I stuck it out for 1 week, then my GI switched me to Asacol HD. Things seem to have smoothed down a bit. I hope you have more lasting effects from Uceris- but I fear it's like pred, in that you quit, & symptoms just come rushing back.
Posted 6/25/2013 10:37 PM (GMT 0)
Great.  That's what I was afraid of.  I guess I'll call my Dr. tomorrow to see what she says.
Posted 6/25/2013 10:58 PM (GMT 0)
haha, I had the exact opposite with Uceris -- When I took it, I slept like the dead and couldn't get out of the house to save my life. I missed a week of work for the first time in almost 20 years (counting when I had cancer!). I stopped taking it and then, when the prednisone wasn't kicking in, my GI suggested I start taking both at once. I took Uceris twice, and both times went to bed at 8 pm and arose the next day at 3 pm. With effort.

Man, I wish that drug had worked for me. But boy howdy, it really really didn't.
Posted 6/25/2013 11:16 PM (GMT 0)
1. you're screwed -

2. leave the toys at home - you'll be too busy to play with them :-)

3. sorry - that really sucks big time - got any pred around ? just to get you through your vaca ?

4. don't worry about the ra -

5. immodium for the trip ?

6. yes, keep taking the asacol unless you have reason to think it's giving you issues -

7. good luck - hope everything works out -

Posted 6/25/2013 11:19 PM (GMT 0)
Most urgency comes from the rectum which Uceris is not good at treating since it is the very end of your colon, you may want to add a steroid enema to your routine if you are suffering from urgency.

I'm waiting for my refill of Urceris, I have 5 pills left. A 3 month supply costs me $700 at express scripts....ugh. The steroid enemas cost me $20 for the 3 months.

Post Edited (ks1905) : 6/25/2013 5:27:11 PM (GMT-6)

Posted 6/26/2013 3:07 AM (GMT 0)

soystud said...
1. you're screwed -

 Okay that kind of irked me when I first read this, but there is probably a ring of truth in it.

2. leave the toys at home - you'll be too busy to play with them :-)   

Screw that! Phil's World outside Mesa Verde, CO and Moab are calling my name.  I'll head out and get a box of Poise or Depends and wear them under my bike shorts and stick about 10 diaper wipes in a bag and stash them under my spandex.   I've seen and personally experienced plenty of people with the D blowouts on the trails who just drank or ate too much the night before so that's no big deal to me. Haha.  

3. sorry - that really sucks big time - got any pred around ? just to get you through your vaca ?

 Great idea, as a matter of fact I do.  I may be willing to trade extreme horrible side effects in exchange for less toilet time.

4. don't worry about the ra - Good to know.

5. immodium for the trip ?  Will look into that as well.

6. yes, keep taking the asacol unless you have reason to think it's giving you issues - Check.

7. good luck - hope everything works out - Thanks!  Sorry if this response is TMI - but I gotta live my life, I'll see how it goes!  I need a bike jersey that says "I can't Hold It"  haha!

Posted 6/26/2013 5:02 AM (GMT 0)
Raw Adrenal capsules. Less than 10 bucks.

Bovine. Everything needed to get yours built up and unless the cow also had adrenal fatigue there is probably a bit of cortisol in there. I feel it and its accessible over the counter.

Good hit of Vitamin A in there to fix the gut inflammation too.

www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=NZ-1005&sourceType=sc&source=FG&adGroup=40-60&keyword=NZ-1005&cm_mmc=Google+Shopping-_-Product+Listing+Ads-_-40-60-_-NZ-1005&gclid=CMj28vn4gLgCFZBcMgodcBEAMg#.Ucp2AqKsjTo
Posted 6/26/2013 8:37 AM (GMT 0)
Honestly I hated around being Mesa Verde, CO and Moab when I was flaring. Ugh. I hope you have a toilet in your RV!

I discontinued Uceris after 8 weeks and I'm still doing well. I was put on Azathioprine (Imuran) around the same time and upped it once a month until I reached my final dose of 150 mg. So far so good. I take it day by day and I'm thankful for every day I am not showing symptoms.
Posted 6/26/2013 12:05 PM (GMT 0)

Andrina said...
Honestly I hated around being Mesa Verde, CO and Moab when I was flaring. Ugh. I hope you have a toilet in your RV!

I discontinued Uceris after 8 weeks and I'm still doing well. I was put on Azathioprine (Imuran) around the same time and upped it once a month until I reached my final dose of 150 mg. So far so good. I take it day by day and I'm thankful for every day I am not showing symptoms.

Of course I do...that's one benefit to having your own RV and having UC, you can use the bathroom in private.  Glad to hear your doing better right now.

 

Posted 6/26/2013 2:21 PM (GMT 0)
Adventureuc, how do you taper off uceris? I'd like to know because i've been on it 9 or 10 weeks already and i know my doctor is going to ask me to get off it soon.. Sorry for going off topic
Posted 6/26/2013 2:26 PM (GMT 0)
Could look into lomotil to slow down the transit time in your body, so that you can possibly time your urgent bm's a little more safely. Lomotil helps calm my IBS issues and extremely fast transit time, which is nice. BUT, when flaring it is not a miracle drug. I just thought I'd mention it in case anything may help.
Posted 6/26/2013 2:29 PM (GMT 0)
I didn't really taper.  I just missed 2 days and then took my last one on Sunday.  I had horrendous headaches and have extreme fatigue when I didn't take Uceris at the end - I don't know if that's related or not. 

I was really surprised how quickly the symptoms came back. Stomach cramps, gas, D right after eating, ugh!

Awaiting a call-back from my GI's secretary to see what they want to do next. 

Posted 6/26/2013 2:51 PM (GMT 0)

adventureuc said...
2. leave the toys at home - you'll be too busy to play with them :-)
Screw that! Phil's World outside Mesa Verde, CO and Moab are calling my name.


I respect this. Go out and enjoy your life and don't let uc stop you. There are a few things you can try to help make it easier:

  • Try not eating for 3-4 hours before you go out and mountain bike. Eat when you get back. Eating can stimulate bowel movements either right away or a few hours later. So it might be easier if you cycle on an empty stomach.
  • Slow the transit time of your GI tract with things like immodium or lomotil as others have said. It won't stop you from having to poop, but it will increase the time period between your poops giving you more time for activities. Some of us use those over the counter meds before going on long car rides or other situations where a bathroom is far away for a while.
  • Most of all go out and have fun and don't worry about it. I think any type of intense exercise increases one's risk of puking or pooping their pants, so that community is much more forgiving then say the shoppers in the line of a supermarket. For example, my father is a long time jogger and cyclist and he's had both happen to him, and had to finish the rest of the route home without his underwear (and he doesn't have any digestive issues). Likely, you are in a remote location so should a sudden urge to go hit you then just dash into the bushes and take care of it.
Posted 6/26/2013 2:56 PM (GMT 0)
"When I say tired it's like I have to try soooo hard just to pick up a few toys "

these toys you dopes ! not the man-toys !

Posted 6/26/2013 2:59 PM (GMT 0)
nah, clearly soystud wants you to give up your man toys and play with dollies from hence forth tongue
Posted 6/26/2013 3:51 PM (GMT 0)
LOL this thread is running off the rails...oh well need something to liven up this place with all of the moping around we tend to do when we're sittin on the toilet all of the time. Imagine that! Thanks for the other suggestions that have been coming in BTW I have been reading every one and will look into it.

Also, my Dr. just called and said she is going to put me on Uceris for 2 more months and that I need to see her tomorrow. Anyone else been on Uceris for more than 8 weeks? As it is I've already been on it for about 3 months now. I'm slightly worried but more worried about living with D all of the time if i'm not on it.
Posted 6/26/2013 5:14 PM (GMT 0)
Have you tried mesalamine enemas for the rectum. An inflamed rectum will result in urgency.
Posted 6/26/2013 6:19 PM (GMT 0)
When you read the prescribing info for Uceris, you'll see that they didn't limit the trials to 8 weeks -- there are results for 12 months as well and they had the same results -- i.e., prednisone-type side effects occurred with roughly the same frequency on Uceris and on placebo. I think you're fine. :-)
Posted 6/26/2013 8:21 PM (GMT 0)
"Janey47 When you read the prescribing info for Uceris, you'll see that they didn't limit the trials to 8 weeks -- there are results for 12 months as well and they had the same results -- i.e., prednisone-type side effects occurred with roughly the same frequency on Uceris and on placebo. I think you're fine. :-)"

That's good to know...now if they would only lower their prices or offer grants for those uninsured folks...
Posted 6/26/2013 8:33 PM (GMT 0)
They have a program for a $25 copayment with participating pharmacies, including Walgreens.

http://www.uceris.com/patient/savings.asp

They say you don't need any documentation if you go to a participating pharmacy, but I saw someone on here say that didn't work for them, so I printed out the coupon and took it with me, and got my copayment reduced from $70 to $25.
Posted 6/27/2013 12:32 AM (GMT 0)
The program only works if you have a fairly inexpensive copay and reduces the copay to just $25. If you don't have a copay such as I don't, (the amount is just credited to my deductible) then the $25 card is not accepted. The drug company still makes money because they probably charge the insurance company close to $1000, with the insurance company paying $900, you have a copay of $100, and then the drug company subsidizes $75 toward the copay, ending with you only paying $25. It probably costs $50 to make the drug and the drug company winds up making the $900 from the insurance company plus your $25. As I said, if your insurance does not have a prescription copay then the card is useless and won't be accepted because the drug company is not going to subsidize hundreds of dollars. In fact, their prescription discount card program encourages you to buy a product that you probably wouldn't otherwise be buying, making them lots of money.
Posted 6/27/2013 12:45 AM (GMT 0)
My insurance does not cover Uceris, so I have no "copay", so the card does not work for me. I'd pay $1300 for eight weeks.



I was at Mesa Verde last summer when I got super sick. I'd only been out of the hospital for a few weeks, and I was just starting Imuran. I picked up some bug in Santa Fe, and by the time I was in Mesa Verde, I was down for the count. My poor DH drove me all the way home to St. Louis, then drove back to NM to pick up DS. It was a crazy trip - I was out of my mind with fever on the way home.
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