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Uceris update- clearly quite systemic on me now

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Ulcerative Colitis
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Posted 4/10/2014 4:01 PM (GMT 0)
I was Diognosed Dec of 2010.
I spent Xmas eve in the hospital bleeding, with cramps, and fever.
I remember when the doctor came out and told me I had ulcerative colitis, I really had no idea what this meant.
I asked him "am I dying?" to which he replied no.
I replied "Oh great!" Can I go home?
The doctor looked at me me sternly and said "this is a very serious disease and chronic, not to be taken lightly"
All I knew then was I could go home for Christmas with temporary meds.
I actually got worse after that, got my GI and had a colonoscopy right in the middle of all this mess! I was told that my entire colin was inflamed, and that I had pancolitis. I was prescribed 8 Apriso, which over time was reduced to 4 a day. Being naive, I thought I had the bullet proof med and that would be my dosage for life to stay in remission.
You might say that was my Honeymoon phase!
What a rude awakening when I had a flare early Jan of 2014 that was worse than the original.
Today I am on Mesalamine enemas every night, 1 daily Uceris, 8 Apriso, and have to take a sleeping pill .
I tried skipping my Uceris for 2 nights and today had the shakes, and other withdrawel symptoms.
After reading everyone's comments I don't know if I can tolerate this "chasing your own tail" regimen of meds, only to find that it's all useless.
It's obvious we are prisoners to our colons, yet I'm so very pensive about surgery! Cant win, and feeling scared.
Posted 4/10/2014 4:17 PM (GMT 0)
As an opinion on Uceris.....

I was unimpressed with it the first time, I was in serious flare, so I took it for 8 weeks and saw almost nothing. However, I did NOT get and side effects that I usually get with Prednisone.

I was put on Simponi which put me into 85% symptomatic remission in 5 weeks, THEN put back on Uceris and that has put me almost back into 100% symptomatic remission within about a week more....so, maybe it's only for mild flares or 'cleanup' after the major drugs I'm thinking...or just for me at least.

IMO I don't think it's a heavy hitter like they want it to be...just for minor flares in conjunction with other things from my own experience, but it's great for no side effects.
Posted 4/10/2014 5:23 PM (GMT 0)
Hi Plt19,

Yeah, this disease is quite unpredictable and is hard to live with (as are most chronic diseases).  Sorry that Uceris is getting systemic for you. I have never taken Uceris but I do have systemic side effects from steroid enemas so I believe our tolerances are all different.  I can however use Cortifoam w/out any problems. 

I see you are now on Meslamine enemas....just a suggestion...when you come out of this flair, you may want to continue to use them for maintenance like 2 times a week.  It has been shown that this and taking the oral asa's together are better for success that oral alone.  Just a suggestion. 

Welcome to the forum...you may want to start a new thread so more people will respond to you.

B

Posted 4/10/2014 9:14 PM (GMT 0)
According to the uceris literature 8 weeks is the max time recommended to take, so I guess it IS an interim drug.
I wonder what will be next? It seems I am always
wondering what will be next!
I took my pill 3 hours ago and thanks, I will take the mesalamine twice a week.
Unfortunately it will cost me $200.00 each 3 weeks, as I am on SSD and have already passed the donut hole thing for the year.
My job let me go 3 years ago because I was an unreliable employee!
Posted 8/16/2014 4:12 PM (GMT 0)
Well, probiotic?
It's over a year... Are you colon free? Are you comfortable with the outcome? Worry free? Challenged? Relieved?
Words of wisdom?
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