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Please tell me the nurse is wrong....

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Ulcerative Colitis
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Posted 11/8/2008 2:47 PM (GMT 0)
My doctor switched up my meds now has me on colazal (instead of lialda), nightly rowasa (still now for 10 months).  She wanted to give the colazal 3 weeks before doing something different.  Well I called and told them my symptoms got better for 3 days and then now is the same.  The nurse talked to the doctor and then called me back and told me to wait until Monday b/c the doctor wanted to talk to the other doctor before making a decision.  The nurse said she was thinking about taking me off all meds and putting me on a 20 day steroid.  HUH?  Have you ever heard of this... stopping all meds and doing only pred.????  I am hoping the nurse heard it wrong...  Please tell me your opinion.
Posted 11/8/2008 3:25 PM (GMT 0)
The 5-ASA's are considered maintenance drugs and I have never been told by a GI doc to stop taking them altogether. It's always a guess with all of them as they may work and they may not though. Usually when I have switched meds I typically do better for a few weeks.... I always wonder if its the placebo affect. I wouldn't stop the rowasa no matter what I was told if I was flaring, and I probably wouldn't stop the oral drug.
Maybe the nurse just misunderstood.
Posted 11/8/2008 3:44 PM (GMT 0)
I think they may add the Pred in addition to the drugs you are already on.Those 5-asa drugs are just maintenance and aren't really good at battling flares.Hope you get some relief soon.
Marty
Posted 11/8/2008 4:40 PM (GMT 0)
The only time I was taken off was when Asacol was making my symptoms much worse. My GI had me stop the Asacol, start Pred and then re-start the Asacol after four days on the Pred. He did it to verify that it really was the Asacol causing me problems.
Posted 11/8/2008 6:03 PM (GMT 0)
What EXACTLY are your symptoms Britney?
Posted 11/8/2008 6:39 PM (GMT 0)
Blood, urgency, 3, 4 or 5 times a day D
Posted 11/9/2008 5:00 AM (GMT 0)
I was diagnosed with UC in 1980. After spending two weeks in the hospital, and barely eating the doc started me on
Azulfidine and I couldn't keep it down. He changed the script to Prednisone, which I was on for about a year, by itself, no
special diet. The side effects added some much needed weight, and started me wearing glasses. Doc switched me back
to Azulfidine, and I've been taking that or Sulfasalazine since.

There are too many side effects for long term care with steroids, but for a flair up, I was always willing to try anything.

Since I've been on Sulfasalazine, doc has never taken me off of it for flair up, just added Prednisone, Cortenamas, or
Rowasa.

I probably wouldn't stop other meds, but I'm a lousy patient. I take 1500MGx1 Sulfasalizine for a 1000MGx4
script. I increase my dose for flair ups up to the prescribed amount, and watch what I eat if I'm having symptoms. I
haven't had need of Pred,, Rowasa, or Cortenemas in about 5 years.
Posted 11/9/2008 7:23 AM (GMT 0)
Britney....maybe try using the enemas every second night to see if that helps..if it does, you just might be on too high a dosage of 5ASA.

where exactly is your UC? limited or throughout?

q
Posted 11/9/2008 3:30 PM (GMT 0)

Thanks for the replies. 

Quincy- my last scope about 10 months ago I had 5 inches of inflammation.

Posted 11/10/2008 8:07 AM (GMT 0)
Interesting...personally, I think you should ask the doc if you can lower the oral dosage to see if that helps.

Were you always on the high dosages of oral 5ASA?

quincy
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