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Uceris presciption length

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Posted 9/5/2014 8:21 PM (GMT 0)
How long is it typical to get a prescription for on this stuff? I noticed I have a 6 month prescription. Thought it was a 6 or 8 week typical dosing. Was a little shocked that it was $1,600 for a months supply. That ends up at 50$ for one pill. Total that up with the Humira for the month and we are at about $8,000.
Posted 9/5/2014 8:26 PM (GMT 0)
Mine was $25 with my insurance and the copay assist card. I've heard the normal course is 8 weeks but I was on it for a bit longer. I guess the trials were 8 weeks but that doesn't mean it's only necessarily effective for 8 weeks. 6 months seems like a long time. I would want another plan before waiting around on uceris for 6 months.
Posted 9/5/2014 8:26 PM (GMT 0)
I am on Uceris and have been taking it for a month and a half. All my doctor said was that it cannot be used long term because there can be terrible side effects. My prescription is for 3 months then I have to switch to something like a 6mp- mercaptopurine. I wish I could have a 6 month prescription of Uceris it's helped me quite a bit.
Posted 9/5/2014 8:29 PM (GMT 0)
When I was on Uceris, my Dr. gave me 5 refills, so I would assume he felt it ok to continue with it past 6 weeks. It did not work so I stopped after 3 weeks. I have been reading more where there is a 3mg dose that they are using for maintenance.

It is frustrating to sit here with meds that you know other could use, my cost was about $25.00 or less for Uceris. I hope your out of pocket costs are not what you posted above. Humira has the prescription card and with my insurance, my out of pocket expense it $5.00, have you checked into this??
Posted 9/5/2014 8:50 PM (GMT 0)
Youretoomuch,

If your GI is going to put you on 6mp, he should be starting it on you now while you are on the Uceris so that you are not left unmedicated! The 6mp takes a few months to kick in, so you would want to be on Uceris during that time the 6mp is building up in your system so that when you come off the Uceris you don't revert back into a flare. The 6mp will help keep you in remission, but won't get you there on it's own.
Posted 9/5/2014 8:57 PM (GMT 0)
Gonk,
I'm going through the blood testing process now so that I am able to start the 6mp. I still have to take the TPMT blood test? Waiting for insurance approval. I think I will still have a month left of Uceris while I'm on a 6mp. I am afraid that the 6mp will not get into my system in time. But I'm hoping for the best.
Posted 9/5/2014 9:13 PM (GMT 0)

upstategal said...
When I was on Uceris, my Dr. gave me 5 refills, so I would assume he felt it ok to continue with it past 6 weeks. It did not work so I stopped after 3 weeks. I have been reading more where there is a 3mg dose that they are using for maintenance.

It is frustrating to sit here with meds that you know other could use, my cost was about $25.00 or less for Uceris. I hope your out of pocket costs are not what you posted above. Humira has the prescription card and with my insurance, my out of pocket expense it $5.00, have you checked into this??

My copay was dirt cheap, so that isn't a problem right now. As far as plans go next GI appt. in Oct. so re-evaluate then. May do a switch from Humira to simponi..... who knows. Not a whole lot left.
Posted 9/5/2014 10:50 PM (GMT 0)
I still think it's funny that some doctors will prescribe prednisone long term but usually not Uceris. That really doesn't make sense. If I were the doc I would prescribe Uceris every day for two full months and then a couple times a week forever after that. Uceris seems like a total waste because even if it works then you just have to stop abruptly and then do something else. Might as well do the something else and skip the Uceris altogether.
Posted 9/5/2014 11:12 PM (GMT 0)
I have to agree with Gary. It may be true that it is not ideal to be on Uceris long term, but seriously people use Pred for years and this is at least a better option...especially if you can use a lower dose and maybe just a few times a week or something. Lets face it immunosuppressants have their risks...UC has its risks etc...
Posted 9/6/2014 12:49 AM (GMT 0)
It seems like I may be the only one on these forums, but I was on 9mg of Uceris daily for over a year. I stopped taking it a little over two weeks ago after my second infusion of Entyvio. I can't really say if I had any side effects while I was taking it, because it feels like nothing has changed since I've stopped. I did express to my doctor my concerns with taking the drug for so long, but he always replied that I had nothing to worry about. I almost don't want to ask... But when people say that long-term use can lead to "terrible side effects," what are you referencing exactly?

At the same time, sheerly out of coincidence, I somehow got out of the habit of taking my Lialda for the first time in a long while, and still have noticed no negative changes... Really makes me wonder if these drugs did anything for me in the first place.
Posted 9/6/2014 3:21 AM (GMT 0)
I mean it's great to think everyone can just stay on Uceris forever but in all honestly, in my case, it helped for a period of time and then it was completely useless. I could have stayed on it but what's the point? If it works for you, it may not be terrible to do a longer course than 8 weeks. The side effects are not quite so noticeable as pred but i was seeing weight gain which is the one I would like to avoid the most but what's the point if you're not seeing improvement or staying in remission? Being on any steroid long-term is not a good option. I'd rather consult with surgeons than stay on steroids forever.
Posted 9/6/2014 3:52 AM (GMT 0)
I think notsosicklygirl is spot on in both of her posts. From what I remember my GI telling me when he put me on it (right after it was first approved) the trials were for 8 weeks, so that was the main basis for the length to prescribe it. He said we had "room to play around" after that based on how I was doing with it, but there may have been insurance issues. Again, this was immediately after it came on the market so things have likely changed since then. Essentially though, I think the length of a course of uceris is basically up to you and your dr. But again, the literature was all based off of 8 weeks.

And again, I need to completely agree with notsosicklygirl - uceris is still a steroid and while the systemic effects may not be as severe, it can still cause serious damage with prolonged use.
Posted 9/8/2014 12:57 AM (GMT 0)
Thank you both for the advice, it seems like it was a good move to stop taking it, especially if I had doubts that it was even still helping. I will be interested to see the results of my next scope, because I remember after I was on the drug for 8 weeks or so I did not feel any different and told my doctor this, but my doctor indicated that internally I was definitely doing better... Still holding out for the Entyvio to be the one that finally pushes me into remission!

But things are pretty "stable" now even if I'm still far from remission, even with the Uceris out of the picture, and I'm content with that for now. I just hit the three year mark from when I was diagnosed, and I think a lot of what's helped the most hasn't been the laundry list of meds that I've tried, it's just been learning to cope over time and not let it interfere with my life. Could be always be a lot worse, we've all been there!
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