too many flares

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lenie
Regular Member


Date Joined Feb 2008
Total Posts : 97
   Posted 2/29/2008 7:21 PM (GMT -7)   
I'm getting too many flare ups.  I'm taking Asacol 2 tabs 3x a day.  When I have a flare I go on Entocort (3 capsules for a week) and I respond very good to the Entocort.  I also use Canasa during a flare.  I told my doc that I was having flares about every 4 weeks.  So he told me to go on Entocort 10 days a month.  I did that.  I've been off the Entocort since Feb 17th.   Here it is 13 days later and I'm back to a bloody, mucusy flare.    So I'm starting myself back on the Entocort tonight.  If it was during the week I would have called my doc, but here it is Friday night.  I know the Entocort will stop it but I know I'll be right back to a flare in a couple of weeks.  Is taking all this Entocort safe?  I'm afraid one of these times it's not going to help me.  I want to be able to write that I'm in remission.  I really like my doc., he's a Gastro guy and he takes a lot of time with me and I can get into him at any time.  But when I keep getting these Flares I wonder if I should see someone else.  Is this thing so uncontrolable?  I read everything that is written at this forum.  You don't know how good you make me feel knowing that there are you guys out there that knows how I feel.  Sorry to go on so long but sometimes living with this gets the best of me and I want to know if I'm doing the right thing.  Thanks for listening. 
 

Meds:  Asacol 2 tablets 3x a day
Entocort 3 capsules for a week when flaring
Canasa when flaring


Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 2/29/2008 7:35 PM (GMT -7)   
Sounds like you're getting steroid dependent,have you tried Azathioprine yet?

Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5151
   Posted 2/29/2008 7:40 PM (GMT -7)   
You didn't say whether your UC is limited to part of the colon or whether you have pan-colitis. That would make a difference as to what meds you should be on in general, but, since you do get relief from Entocort & Canasa, I assume that you have recurrent inflammation in the rectum and/or sigmoid colon. That being the case, you should probably be taking rectal meds nightly until you achieve remission, & then taper them down to a maintenance dose. The latest medical thinking on 5-ASA meds is that oral pills used in combination with rectal 5-ASAs increases the UCer's chances of achieving remission & staying there. Have you ever used Rowasa, the liquid mesalamine enema? It treats inflammation higher up than Canasa can reach. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)

lenie
Regular Member


Date Joined Feb 2008
Total Posts : 97
   Posted 3/1/2008 8:49 AM (GMT -7)   
I had a colonoscopy 4 months ago and the doc said it didn't show uc, but he said I have all the symptoms (the blood and mucus and 20 bm's a day) He said he wants to have another look in a couple of months. Thinking I should use the canasa nightly. I was only using them in a flare. Hopefully that would help me. My poor Hubby is very patient but I think he's getting tired of me saying I can't leave the house today. Thanks Old Hat.
Meds:  Asacol 2 tablets 3x a day
Entocort 3 capsules for a week when flaring
Canasa when flaring
Xanax for anxiety


blueclassring
Regular Member


Date Joined Feb 2007
Total Posts : 385
   Posted 3/1/2008 10:14 AM (GMT -7)   
this disease can rule your life if you let it.
Pharmacy Student, Class of 2009.  Diagnosed 8/99.  Suffered for almost 10 years.  I am currently on the Specific Carbohydrate Diet and am nearing remission.  I feel fantastic!    I have lost so many years to this disease.  I decided to become a pharmacist to understand these drugs, and to help fellow sufferers of IBD.  My goal is to open up a pharmacy and take care of my patients(particularly explaining what the drugs do to you), compound special medications, and have a great practice. HAVE YOU CONSIDERED THE SCD DIET? IT HAS PUT ME IN REMISSION AND I PLAN ON GETTING OFF THE ASACOL SOON TOO!  (In remission since 2/15/08)
Meds 3200 mg Asacol, 2.5 mg Prednisone.  Doc wanted to put me on 6-mp or Remicade, but I refused to take the medications!  For me, diet works...


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 3/1/2008 10:34 AM (GMT -7)   
Be wary of the Entocort. I was steroid dependent and was on it for several years, first at three than at two caps a day. Every time I tried to drop below two I flared terribly again. It isn't supposed to have as many bad side effects as Pred, but I got osteoporosis (even with Fosamax and and calcium/D supplements) as well as avascular necrosis (a hideously painful bone disease which can be caused by steroids.)

Take it if you need it, but keep in mind it isn't appropriate for long-term use. It can give you problems just as bad as (and much more painful than) UC.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 3/1/2008 10:35 AM (GMT -7)   

lenie,

Given what you're going through, it's good to get a second opinion to be sure you're taking the best course of action.  In fact, no matter whether someone's in remission at the moment or having a flare-up I think it's wise to get second opinions as UC treatment is very subjective.  I've seen 3 GI specialists (in 3 different countries!).  In my case they offered somewhat similar oral prescription drug options, but differed in the advice offered on prescription rectal meds, diet and taking supplements.


Rio, 31 yr old male - diagnosed with UC in 07/2006.
 
Alternative therapies for several months (SCD, ayurvedic treatment, VSL#3): didn't work and became anaemic. Canasa, 2 daily: remission for a month then flared-up.
07/07-11/07: 4800mg Asacol (6 x 400mg, twice a day) & Aloe Elite.
Completed first (6 week) tapered course of Pred in 10/07, flaring up since coming off it.
11/07: Switched from Asacol to 12 x 750mg Colazal (3 weeks on it and symptoms got worse)
12/07: Asacol 4800 mg, Started Azathioprene 175mg, Prednisone taper from 60mg - Now on alternate days of 20mg and 10mg; 2/08: added 1 Pentasa x 1mg.


lenie
Regular Member


Date Joined Feb 2008
Total Posts : 97
   Posted 3/1/2008 12:26 PM (GMT -7)   
Thanks for so much good information. Long term use of Entocort I now know is not a good thing. But boy it does make me feel better. I will look into getting a second opinion from a different doc just to be sure I'm on the right track. Since I can't go more than 4 weeks afer I stop the Entocort without another flare I think something else has to be tried.
Meds:  Asacol 2 tablets 3x a day
Entocort 3 capsules for a week when flaring
Canasa when flaring
Xanax for anxiety

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