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Thoughts on Uceris

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Ulcerative Colitis
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Posted 12/6/2019 5:45 PM (GMT 0)
Hi
I’ve been on this forum before but with another email. Diagnosed 7 years ago. Flare once a year normally been treated with rectal meds. Went into a flare last February. Rectal worked then did not. Colonoscopy showed inflammation had spread to left side. Put on balsalizide which did very little. Put on 20 mg Preg taper stating aug 1. Instantly worked but have not been able to get below 10mg. I moved and took a while to find new gi.
He told me to go on Uceris(tried before 9mg tablets) and stay at 10mg and balsalizide( 3 pills 3 times a day) Symptoms started coming back before I could get insurance to cover Uceris. I have upped preg back to 20 and on Uceris but still bleeding and feeling poor. Added Rowasa yesterday.
Super confused why the preg at 20 and Uceris is not helping.
1. Could the Uceris cause the symptoms to be worse? My fist dose was last Thursday(need more time?)
He told me to stick with this till Monday
Thoughts on staying on the Uceris?
2 Thinking I should change to another mesalimine then balsalizide? Thoughts?
Thanks for any information and support
Michael
Posted 12/6/2019 6:08 PM (GMT 0)
What you describe sounds like a case of disease progression in extent and severity, that permantently necessitates the usage of much stronger meds and dosages. You cannot get below 10-mgs of pred, means you need more to get by without pred. I would max out the anti-inflammatories, and if that does not work then go on to your choice of either Imuran/6MP or remicde/humira.

Max dosage of Balsalazide Disodium is 6,750mgs. That's a daily 9 pills (each being 750-mgs). And you should take one mesalamine enema a day (usually 4,000-mgs). Give that a 3 or so weeks to work. If you cannot get off of pred then talk about the other aforementioned meds. I do not think switching from Balsalazide Disodium to another mesalamine like lialda/pentasa/asacol would make much, if any difference. The differences among them are so minor, it is really a pipe-dream kinda hope.

"Could the Uceris cause the symptoms to be worse? My first dose was last Thursday(need more time?)"
Uceris will NOT make you worse. You should have a response in 2-weeks or less for Uceris.
Posted 12/6/2019 7:27 PM (GMT 0)
Uceris never helped me. It's like a really expensive sugar pill for me. I doubt switching to another mesalamine would help either. Were you not doing Rowasa at all for maintenance? They can definitely take a few weeks to work. If that's worked for you in the past, maybe that's all you'll need again this time.
Posted 12/6/2019 8:38 PM (GMT 0)
I have been on Rowasa but not since being on preg. I’m just confused why the preg is not working when I increased from 10 to 20mg last week . 20 was holding my symptoms and was fine even at 11.25mg.
I think my doc thought stay on 10 and hopefully the Uceris will allow me to come of the preg. I saw him 2 weeks ago when I was symptom free
Thanks
Posted 12/6/2019 8:45 PM (GMT 0)
I don't know either. This disease can be super confusing. :/ Makes sense what your doctor was thinking.
Posted 12/7/2019 4:51 PM (GMT 0)
Very frustrating . Have a bad cough too which is compounding everything. Think I need to step up to 40mg of preg on Monday . Moms 75th birthday is next week so I need to get this under control. Thinking of stopping the Uceris just to see how I react .
Posted 12/7/2019 5:37 PM (GMT 0)
The first time I tried Uceris it took 2-3 weeks to start to see improvement and by about 6 weeks I was symptom free. Te thing I loved about it was that there were zero side effects (unlike the variety that pred throws at you).

For me if I have to go on prednisone I have to start with at least 40 mg for a taper -- last time I had to start with 60 mg

Are you still using rectal meds? If not, why not? Mesalamine enemas work great for many people. For quicker relief you could use hyrdrocortisone enemas. It's best to use both oral and rectal medications.
Posted 12/7/2019 6:05 PM (GMT 0)
I’m trying Rowasa now . I’ve been on a variety of rectal meds for years but not since being on Pred. I am feeling as bad as ever right now and the main thing that has changed is the Uceris. Seems like I should keep with it but think it might be causing issues? Anyone feel better after stopping Uceris?
Thanks
Posted 12/7/2019 6:36 PM (GMT 0)
You could stop it and if it is a reaction to the Uceris you should feel better in a couple days. It you don't have any change then go back on it

Rowasa should help within a couple weeks
Posted 12/9/2019 5:30 PM (GMT 0)
Update
For the first time ever I had to go to the er yesterday . Have been fighting a chest cold with asthma and it all became to much for my body. They pumped me up with steroids and antibiotics and breathing treatments. Also ct scan. They released me around 7 hours later when my breathing got better. They want me on antibiotics and 40mg for 5 days. I will talk to my doc at 1pm. Thinking I need a change in plan now that I’m on 40mg. Will keep you updated and any advice is appreciated.
Posted 12/9/2019 5:45 PM (GMT 0)
Uceris/6MP worked great for me. Got me out of a year long flare. I've been in remission for a few years now. I continue to take 6MP every day.
Posted 12/9/2019 7:35 PM (GMT 0)
Sorry to hear you got admitted to the ER, but glad you're feeling better today!
Posted 12/9/2019 8:05 PM (GMT 0)
Talked to doc today
Wants to do a 40mg preg taper
Stay on UCERIS and Rowasa
He mentioned Humira as the next step. I’m a little worried about that as my insurance is through the state since I just moved.
Thinking 6mp as it is inexpensive even without insurance
Posted 12/9/2019 8:23 PM (GMT 0)
Humira has a co-pay assistance program that makes your co-pay only $5. Sorry you had to go to the ER.
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