Anyone on Uceris?

It's been a little over 24 hours and I already feel significantly better. No urgency or running to the bathroom - at all! I'm also no longer nauseous, in pain or gassy. I really cannot get over how quickly I'm noticing major improvement.

For reference, I am a 39 yr old female whose had UC for 14 yrs. I currently take Asacol HD (6pills/day) & Canasa as needed (usually 1x/week)

was wondering how the uceris was going LoLoinNJ, i'm still "not allowed" to go on it until my GI says so.

Well, my last GI appt was the final blow for that guy, and unfortunately I am paying the consequences of waiting to get into a new GI. He absolutely refused to have a little woman ask him..or gasp, tell him how to do his job (I'm assuming that was his interpretation). He hadn't heard of it, he wouldn't even consider it, he would put me on biologicals before even considering it! Even though he has me on endocort & knows how I respond to it! It was a stand off, little guy, towards the end of the appt., I was standing & facing him so it was a clear, "I'm not backing down" situation. He gave me flagyl, big whoop, that has made me D non stop. Meanwhile...I have a surgery coming up to repair my urethra & I have to get this D under control as it cannot be good for that surgery & healing & trying to keep clean, etc! Can you tell I'm a bit upset?

I started taking Uceris a couple days ago. It's been amazing so far.

For the past 3+ weeks I'd been in a full-blown flare-up with bloody D, urgency, 8+ trips to the bathroom per day, etc. Tried diet adjustments, VSL3 and pysllium seed powder with some hints of progress but no real recovery. I'm on on 4.8g/day of Lialda, which generally has been good but wasn't pulling me out of the flare.

Within 1 day(!) of starting Uceris I improved from really bad to normal stools, no blood, no urgency, ~3 trips.

Disclaimer is that I inadvertently started with an overdose. My GI hadn't used Uceris with any patients before, just got some samples. He wrote a prescription and told me to start with the samples he gave me, 3 per day. The pills are actually 9mg each, but he wrote the prescription for 3mg pills X 3...

By the time this came up at the pharmacy, I'd already taken 27mg/day for two days. Pharmacy filled the prescription as 9mg X 1. That's what I'm taking going forward. The doctor and I should've cross-checked better. There's no major risk from short-term overdosing, esp. because it releases locally in the colon rather than into the bloodstream. I felt a bit amped up and got some slight puffing in my cheeks. Nothing else noticeable.

So, really encouraging overall. Others' results might be less extreme starting at a normal dose of 1 9mg pill per day. Fingers crossed I don't regress at the normal dose.

Meemers said...
He absolutely refused to have a little woman ask him..or gasp, tell him how to do his job (I'm assuming that was his interpretation). He hadn't heard of it

Hasn't heard of a new promising drug for U.C.?? Isn't that his freakin' job????? Ridiculous. Time to say bye-bye.

C_G_K said...

Meemers said...
He absolutely refused to have a little woman ask him..or gasp, tell him how to do his job (I'm assuming that was his interpretation). He hadn't heard of it

Hasn't heard of a new promising drug for U.C.?? Isn't that his freakin' job????? Ridiculous. Time to say bye-bye.

Clown they sent to my hospital room rollled thru offering worms, surgical removal of colon and humira despite gramps having cancer.

I inquired about UCERIS and his reply was 'that is not available to you'.

Same outfit refusing iron infusion when i frantically called saying I was going to throw a clot if we did not get 800 platelet count down - DENIED.

Now out of hospital I phone nurse asking her to ask my primary GI doc for UCERIS because pharmacy has it and insurance supports it tier3 65/month. I am told we need to discuss that 1-on-1 with an appointment.. Down one hand I arrive 10 mins late, nobody at front desk until I am 15 late - DENIED dr is heading into a 'procedure' ah the butt scope.

So I get to talk to gal about trial drug and how it is similar to one that killed 75 people. Asked her could we just order up some UCERIS for 1) prime the pump with aetna 2) provide smooth landing at prednisone = 0.

She said she would mention it to him and they scheduled me to see him in 2 weeks.

If I dont get a script for UCERIS that day I am never ever going back.

aguywithuc said...
Wow they called today as I was late taking daughter to first gymnastic appointment. The Uceris answer came back 'we will cross that brigde when we get there - moving your apt up so you have twice the time to discuss with the Doctor - we have not even had any Uceris reps visit us'.

That last line is what drives me insane. So a drug could be on the market that could help immensely but because a sales rep hasn't made their way out, the doctor won't do some research on his own? Absolutely pathetic.

Sounds like a lot of our GI Doctors are @sses. Jumping through hoops left and right to get treatments/meds, etc. It's almost like being a GI was their punishment for something and they all act like we are a nuisance to them. Here's some prednisone, here's some Remicade, if that doesn't work we'll cut out your colon, NEXT!!!

That's one thing that ticks me off about doctors. Oh how they would probably be different doctors if they were the ones with UC. It is so easy for them to just do this and do that, not having to worry about side effects, etc. When they want to begin serious meds they poo-poo the side effects, convincing you that serious side effects happen to such a small percentage, and oh, by the way, "I need you to sign this form explaining I've told you about all those serious side effects".

I started taking Uceris in the morning once a day on 12-19-2013 with mixed results....it worked 'ok' for me for a bit, but long term...

I eventually wound up on Prednisone, and I'm starting Simponi this evening...so there is your answer I suppose!

Seemed kind of weak to me, maybe it would be ok for a small flare up.