How bad does it get?

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Date Joined Feb 2006
Total Posts : 261
   Posted 8/25/2010 7:28 PM (GMT -6)   
For those of you taking 5ASA's, how bad did your disease get before you moved onto something more powerful such as Imuran? Some days I don't feel that sick at all so I don't know if it's worth moving forward at this point.

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Date Joined Jan 2010
Total Posts : 8422
   Posted 8/25/2010 7:40 PM (GMT -6)   
My experience doesn't really count, because I couldn't tolerate the 5-ASA drugs at all - they all induced severe Crohn's-type symptoms in me at a time when I simply wasn't used to severe symptoms, and it was quite scary. Therefore I can't say whether they would have done anything for me or not. (My GI doctor thinks not...)

I'd say if you're feeling pretty sick on some days, that's reason enough to increase your dose or try something new - such as Imuran/6MP.

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Date Joined Oct 2009
Total Posts : 1070
   Posted 8/25/2010 8:50 PM (GMT -6)   
i hear that they are considering changing the approach to STARTING with the big guns like remicade instead of moving up the ladder from the 5 asa

Regular Member

Date Joined Aug 2010
Total Posts : 31
   Posted 8/25/2010 11:07 PM (GMT -6)   
I wish my orig GI doc had! I started with asacol and went thru a year of flares every month or two with my UC. Finally my new GI moved me to imuran but I had a bad reaction and am now on my 2nd dose of remicade. Hopeful it works and wish you the best. Dont settle for no if your not feeling better!

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Date Joined Dec 2008
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   Posted 8/26/2010 12:36 AM (GMT -6)   
I don't think they usually start you on 6mp unless they are having trouble getting you off Prednisone. For me, it was Rectal Meds, then Asacol, then prednisone (relapse under 5mg), then 6mp to help me get off prednisone but it hasn't helped so far... I didn't want to start 6mp but there weren't too many options. I'm still not in great shape but I would think if you're well managed on 5ASAs and you're not taking prednisone for a prolonged time, there wouldn't be any reason to start anything else.
March 2007: Diagnosed with Mild Proctitis - Canasa as needed.
August 2008 - December 2008: FLARE & Anemic - Started Asacol!!
January 2009 - December 2009: REMISSION!! Asacol (9) + Canasa 2x Daily
December 2009 - January 2010: FLARE!! Asacol + Prednisone + Canasa
February 2010 - April 2010: Colazal + Prednisone + Canasa
May 2010 - June 2010: Lialda + Cort Enema + Prednisone : Colonoscopy: Mild / Moderate Active Pancolitis
CURRENT: DOING OK! Prednisone, 6mp, klonopin, Canasa + Vitamin D

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Date Joined Aug 2007
Total Posts : 884
   Posted 8/26/2010 8:49 AM (GMT -6)   
notsosicklygirl, I was put on 6mp and had not been on prednisone, so that's not always the case.  When I was dx'ed, they started me on Remicade first, since my flare was so severe.  After Remicade started failing, that's when we started trying 6mp, etc.   

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Date Joined May 2010
Total Posts : 8375
   Posted 8/26/2010 9:11 AM (GMT -6)   
WantRelief, I'm in the same boat. I'm going to see my GI on Monday. I've been managed pretty well on 5-ASAs for the last 6 years, but I've got arthritis in my SI joint associated with my IBD and that's something that worries me. I'd rather it not get worse. My bowel symptoms are really quite manageable.

On the other hand, maybe I'm just kidding myself and I'd feel a whole lot better on different meds. Am I tired all the time because I have 2 children, work a full time job, just renovated my house and don't sleep more than 6.5 hrs a night? Or is it the IBD, LOL!
48 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (6g/day), Sulfazine (1.5 g/day), Prevacid, vit. D (20K iu), flax seed oil (2 tsp/day), mesalamine enema as needed.

Veteran Member

Date Joined May 2006
Total Posts : 1177
   Posted 8/26/2010 9:14 AM (GMT -6)   
My husband was originally diagnosed with Ulcerative proctitis only (for 5 years), and was only taking Canasa suppositories, on even oral Asacol. Then, he landed in the hospital with a severe flare and a c-diff infection, so they put him on high dose steroids, Remicade, Lialda, and Canasa. So, now he takes Remicade, Lialda and Canasa and he's doing well. I truly believe that if he had been on some kind of stronger med like an immune suppressant, his flare up would not have been as severe.

Starting with his second dose of Remicade he was on the road to recovery; it truly has been his miracle drug and gave us our life back. So, if you are considering Remicade, and life is sucking right now because of Crohn's, I for one definitely think Remicade is worth a try.


Regular Member

Date Joined Feb 2006
Total Posts : 261
   Posted 8/26/2010 3:48 PM (GMT -6)   
Kazbern, I could have written your response. I too have the arthritis in SI joint and to be honest, it causes me more problems than my bowel at this time. I talked with my GI doctor and she understood my issues and really has just left it up to me if I want to start Imuran or wait until I know that "i feel bad enough" and am ready.
33 year old female
CD of Terminal Illeum and Rectum Diagnosed 12/04
Malignant Melanoma in 2000.
Illeocolonic Resection 1/08 (18 inches of terminal illeum, illeocecal valve, right colon and appendix)
Current Meds: Pentasa, Fosomax, Vitamin b12 injections, Vicodin as needed.
November'09 colonoscopy shows reoccurance at anastamosis and active disease in sigmoid and rectum
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