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Uceris - Anyone Try It

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Ulcerative Colitis
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Posted 6/30/2013 1:21 PM (GMT 0)
constantinprayer
My daughter is 17 and a junior so we understand your challenge and your will. We will add you to our nightly thought list and will wish you good health. My daughters symptoms are the same as your's. Uceris did cut the frequency down dramatically and allowed her to get some sleep. We have found that this is a very individual disease and effects each person differently as do the meds. Just because 97% don't have results, doesn't mean you won't be part of the 3%.
Posted 7/5/2013 7:09 PM (GMT 0)
20 days into a course of Uceris - feeling quite good now - moderate flare has subsided, doc is on vacation for a week - think I will go every other day for a week to taper off now, rather limit my exposure to these drugs-

Wish me luck : )
Posted 7/7/2013 5:42 PM (GMT 0)
tekkamaki - was your UC left sided? It took 20 days for you to see any signs? I tried Uceris for 10 or 11 days and there were no signs of improvement so I gave up - I hope I didn't give up on it too early.
Posted 7/9/2013 9:17 PM (GMT 0)
My son started Uceris about 2 weeks ago, while tapering Prednisone, and he is doing really well. He is down to 5mg Prednisone, and the UC is under control. He has one to two semi-formed stools per day, no blood, pain or mucous. I'm not sure if its the Prednisone or the Uceris, but he's doing well. I wonder why they only prescribe it for 8 weeks though??
Posted 7/10/2013 12:57 PM (GMT 0)
Our insurance company covered it for 4 weeks and denied the second 4 weeks for our 17 year old daughter.
Posted 7/10/2013 1:43 PM (GMT 0)
For clarification, I started feeling better 10 days in- had moderate flare with bleeding and D. And yes, I am left sided. Side effects seem minimal compared to pred- minor headaches, a bit less sleep and eating a bit more.

I went on rectal Mesalamine at the same time which seems to give me D in the morning after I take it.

Still feeling better as I finish my every other day taper.
Posted 7/10/2013 1:53 PM (GMT 0)
electro: that doesn't make sense. Insurance companies don't have the right to arbitrarily decide on a whim what they will cover and what they won't. They have to legally go by what's written in your policy. Either they made a mistake in the first place by covering something they shouldn't have or they are trying to con you over the cost. I'm betting they are trying to con you and intimidate you to do something different with a lower cost but they cannot legally do that. They do try though, hoping that you won't fight it. about the only exception I know of would be if your policy expires lets say on July 1st and your old policy covered Uceris in June but your new policy starting in July did not. I used to know someone who worked in the industry and they would get paid bonuses for denying coverage of things that were actually covered in your policy. Even though they would lose out if someone fought the denial they still saved millions of dollars per year on those who would just roll over and accept their decisions without a fight. I would check into it if I were you.
Posted 7/10/2013 2:40 PM (GMT 0)
Gary, thanks for your response. We are appealing. Been down this route before. The appeal process is a pain and takes time. We were denied an expedited appeal. Interesting the denial came back with it was denied but if we can show history of UC it can be overturned. They're kidding right, 3 years and without exaggeration over a million dollars in insurance coverage and they want history?
Posted 7/19/2013 8:32 PM (GMT 0)
After nearly 20 years with a Crohn's diagnosis, my new GI last year told me I have UC and it is absolutely obvious from colomoscopy, not that this matters, seems that the treatment is about the same. After a good long few years ofr remission, I have had a major flare, 1200 mg Asacol didn't control it, dietary methods didn't help, and I refused prednisone based on a terrible experience (anxiety disorder plus all the usual stuff) and after a sigmoidoscopy revealed a severe flare (left side) on Tuesday, my GI was insistent I try both Purinathol and Uceris. He had written me a scrip for Purenathol two months ago but after reading the side effects, I was too spooked to fill it. I had never heard of Uceris before this and wondered why he didn't mention this when I was last in the office.

In any case, I filled the scrips this time after a desperate week (spent time in restroom at Fenway Park McCartney concert, not the ideal way to see what is left of the Beatles) and most of the first act of a play in the restroom Tuesday night, leaving at intermission. Since I could barely make it to the bathroom from my bedroom some mornings, I felt that the time had come to try it. They had to order both scrips but did accept the $25 coupon on the Uceris web site at CVS, a happy surprise.

I started the imuunosuppresive Wed am and am already freaked out that the side effects such as hair loss will happen, but the Uceris was amazing, took first one Wed am, already was better by this am, second one today and was able to make it through my first Zumba class in a week. So far so good!

Posted 7/22/2013 12:30 AM (GMT 0)
JD good luck with the Uceris.

Follow-up, the insurance company reversed their denial and have the covered the second prescription for the Uceris. I knew that would happen.
Posted 7/29/2013 8:22 PM (GMT 0)
I began taking Uceris in mid July and have already noticed a marked improvement! Had undergone an acute UC attack for many months which I have treated with Remicade infusion (had my 4th infusion on July 16.)
I coupled the Uceris with an average dose of paregoric each day for the first week. (4 tsp/day) I've just passed my 2nd week and the once out of control diarrhea is now under control. Bleeding has virtually disappeared. There have been no side effects of which I'm aware. Took prednisone for my last major flare-up, in 1991, but so far, Uceris is much more effective. It seems to be great stuff.
Posted 7/29/2013 9:47 PM (GMT 0)
Oldpup - glad to hear it's working for you as well.

I've been on it since end of March and after a week it's been smooth sailing ever since.
I started taking it every other day and only having 1 or 2 BMs a day - mostly solid unless I eat/drink something weird along with the SCD (diet). No mucus/blood. Almost makes me forget I have UC - almost.
Posted 7/29/2013 9:59 PM (GMT 0)
Adventureuc - Uceris is usually prescribed for only 8 weeks. How long have you been on it, what doses, and what about your future plans? I've always wondered what the docs expect you to do after the 8 weeks.
Posted 7/30/2013 12:49 AM (GMT 0)
I've been on Uceris for 12 days now. I started it on the 9th day of a 10 day pred course at 40mg. I have been improving, slowly, but going in the right direction. I see the GI next week for a progress follow up, I'll report back as to what he says about what happens at the end of the eight weeks. I am guessing that he doesn't really know exactly either as this is a new drug and he doesn't have much experience with it. I may very well be his first patient on it.
Posted 7/30/2013 2:04 AM (GMT 0)
garylouisville,

My doc said I needed to start thinking about starting either Humera or Remicade or some other drug. The week right after I went off Uceris my UC symptoms returned after only a day or two. So that sucks to think about not having Uceris. She said she would put me on Uceris for another 8 weeks but didn't say why not more than that. I wonder if they are testing it out on me...

When I finish this round, I'm going to find out why it can't be used as a maintenance drug and am either going to get more Uceris from her OR I'm going med-free to see what I can do before getting on the serious stuff.


That's why I started the SCD food elimination diet. I'm hoping the meds will allow me to diet to heath. If that doesn't work then my next step is FT using my spouses donation. He already said he would mix it up and do everything for me. If that doesn't work then I'm going to try nicotine. If those all don't work, I don't know what I will do...

Posted 8/3/2013 5:50 AM (GMT 0)
This is great to hear!!! My dr. just prescribed this to me yesterday. Insurance is being difficult and say they wont cover it. My dr. has to call and explain that there is no other alternative or similar drug . Not sure what the process involves, but all I know is that I really want to start this medicine soon.

I'm so happy for all of you that are feeling better. Remission smilewinkgrin I pray you all are almost there with the help of this med.
Posted 8/3/2013 1:30 PM (GMT 0)
I have been wanting to try Uceris but must confess to letting many of you be the guinea pigs first. My only real main concern has always been, what happens after the 8 weeks? It would seem that my fears are confirmed, Uceris can work fine in many as long as you take it. After the 8 weeks your SOL. I really don't understand why they can't let us continue taking it, at least every other day or every third day and see if that can keep you in remission. And, I really don't understand why so many can be prescribed prednisone for months or years and yet Uceris is only 8 weeks only. That really doesn't make any sense.
Posted 8/3/2013 2:54 PM (GMT 0)
Gary,

My guess Is that it is because the drug is so new. Once doctors have some practical experience with Uceris under their belt, they will indeed stray from the 8-week protocol. I am happy to be your guinea pig. Onwards and upwards.
Posted 8/3/2013 5:18 PM (GMT 0)
day 4 of uceris. definitely experiencing some ups and down in terms of symptoms, but I blame my poor choices in diet moreso than the uceris.
Posted 8/3/2013 6:36 PM (GMT 0)
Budesonide is not new, and you can take it for months, orally and rectally. I have. Mention this to your doctor.
Posted 8/4/2013 10:04 AM (GMT 0)
Uceris Update:
I've been on Uceris since the end of March. I tried going off of it after 8 weeks and the flare started up immediately. My Dr. put me back on it and I decided to go SCD in conjunction with Uceris. I finally quit taking Uceris last Monday and have had NO bowl problems since then. No sudden urges, no cramping.
I even had a stressful situation Friday with family and I was scared it would cause a problem but nothing happened bathroom-wise. I'm cautiously optimistic this diet is what is helping me.

If this drug works for you, then you might want to look into that diet if you haven't already.
Posted 8/6/2013 7:02 PM (GMT 0)

garylouisville said...
Adventureuc - Uceris is usually prescribed for only 8 weeks. How long have you been on it, what doses, and what about your future plans? I've always wondered what the docs expect you to do after the 8 weeks.

I just got back from my follow up with my GI after 3 weeks on Uceris. I asked him about the 8 week protocol. He said it was meaningless and that it's only significance was that the study that got it approved was an 8-week study and so because it is new, 8 weeks is just a starting reference point. He then reiterated that it is a steroid and that it is not a maintenance drug and he went on to add that he would have no problem shortening or lengthening my time on Uceris if he thought there was a reason to. He said "treatment is an art, not a science". I like this GI a lot - my previous GI's were so by the book I wondered if they had any clue about anything or if they could make a medical decision based on their experience rather than strictly established protocol.

Another thing my GI said to me - and I had the same thought the past couple of weeks - was that he did not think the Uceris was helping me, but rather that the 10 days on prednisone before the Uceris turned the tide on the flare and that is why I am so gradually (but steadily) improving and coming out of it. For me, that is how I have always come out of flares, gradually over a period of months, and this feels the same - except I had the huge jump start from the pred. So, in other words, if the Uceris were working as it ought to be, he would have expected that I was symptomatically in or nearly in remission at this point, which I am not. That said, he thought I should finish out the 8-week course, no reason to stop it when things are going in the right direction for whatever reason - don't rock the boat. I'm doing great and progressing steadily out of this flare, but I've got a ways to go to remission.
Posted 8/6/2013 7:39 PM (GMT 0)
I like your doc. I wish all GI's would throw their medical books in the garbage. This is a disease where there is no known cause and no known cure so what good are the books? Someone somewhere needs to use their god given noggin instead of blindly following a book that tells you up front their is no known cause or cure. Unfortunately, a lot of insurances make the doctors go by the book.
Posted 9/4/2013 1:03 AM (GMT 0)
My GI took me off the Uceris (it's been 6 weeks) as my flare is getting worse again. He and I both did not feel it was working a month ago but I was doing ok so we stuck with it.
Back on the prednisone, this time I assume for longer than the 10 days I was on it the first time. Fine by me, I need to put this flare to bed already!
Posted 9/4/2013 3:48 AM (GMT 0)
I've had pancolitis since 2007 and Type I Diabetes since 1996. I can't take Humira or Remicade because of the very rare side effect of drug-induced lupus (this past episode included pleural effusions in my lung and pericarditis which is inflammation around the heart). I'm also not supposed to be on Prednisone because of being diabetic, but it's really my only option during a severe flare. My doc is reticent on 6mP because of the risk of pancreatitis (which I have a history of). So, I'm kind of screwed.

So, currently I'm on 4g Lialda, Rowasa, and Uceris. I'm on my 7th week on Uceris, and while the improvement is not as good as with Prednisone (which works wonders for me, but causes SERIOUS issues with Type I diabetes), it's been enough improvement that my quality of life is remarkably improved. I go between 3-4 times a day, about 75% of the time D, but no blood or mucus. I can live with the diarrhea, I'm just worried about after week 8 of what will happen! Apparently Uceris CAN be extended for another 8 week course.

Anyway- I just wanted to respond to let you know that I feel your pain dealing with diabetes and taking steroids. The effects of Uceris are less on the diabetes, but I still think they're there in terms of some insulin resistance. I normally get terrible reflux while on prednisone (I'm a professional singer, so this wreaked havoc the last time). Not nearly as bad with Uceris.

I have a feeling it won't keep me in remission, but it's making life tolerable at the moment, for which I'm thankful.

As if having one auto-immune disease wasn't enough....having two is even more challenging!
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