Steroids or Imuran- which should I choose?!

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Suesse
Regular Member


Date Joined May 2006
Total Posts : 45
   Posted 1/26/2008 10:53 PM (GMT -6)   
I'm back :(

I was diagnosed with UC (mainly proctitis) about 2 or 3 years ago. I was in remission for a little while and came off all meds. Then it returned a few months later and those meds no longer work! I've tried pretty much everything but last week my consultant said I need to go on either Imuran long-term or oral steroids for at least 8 weeks, because the ulceration and bleeding are now acute. The thought of either one scares the cr*p out of me (No pun intended!).
Basically my only symptom right now is bleeding, it's every day - with or without BMs, it's heavy, pretty much all of my clothes and bedding have been blood-stained (despite using panty-liners). Yes, it's gross and embarrassing but is it worth taking really strong drugs with nasty side-effects?!

I'm in my 20s and I've accepted that my life can't be "normal" with this illness but having severe side-effects will depress me!

Any advice is appreciated :)

My current meds (not working) are Dipentum, Predfoam and Cymbalta

princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 1/26/2008 11:25 PM (GMT -6)   
I would try the Imuran personally because I despise Prednisone. I hear it takes up to three months for Imuran to work so I'm surprised they're not trying to get you to take the Prednisone while you start Imuran. I hope you get better soon!
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Anamantle, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Jan 29) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil, Darvocet, Tylenol pm, Lyrica for Fibro started 1/17/08


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 1/27/2008 12:15 AM (GMT -6)   
I agree. Most GI's put you on Prednisone for at least a couple of months when you start Imuran because it isn't effective right away. I'm also wondering why your doctor isn't talking about a different 5ASA drug such as Pentasa and Colazal along with mesalamine enemas. I think I'd ask to try Colazal and the enemas before going on either.
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


girl28
New Member


Date Joined Jan 2008
Total Posts : 1
   Posted 1/27/2008 8:26 AM (GMT -6)   
Hi i'm in my 20's as well and i was diagnosed with UC 7 yrs ago, i also had similar problem with meds gradually not working. At the moment i'm not on any meds because nothing works for me. i've tried natural therapies that seem to help a little bit. Obviously you need to follow your specialist suggestions but keep in mind that there may be other things that make it easier. I hope you get better soon

CityWoman
Regular Member


Date Joined Jun 2004
Total Posts : 123
   Posted 1/27/2008 10:28 AM (GMT -6)   
I agree with princesscolon. I am also surprised they don't start you on pred to get the bleeding stopped and the ullcers healed and then get you on Imuran.
 
Judy

February 04: Rushed to hospital with severe blood haemorrhage. Diagnosed with indeterminate UC in 2/3 of my bowel. Treated with heavy doses of Pred; started Salofalk tabs and sups.

 

April 06: First major flare – more haemorrhaging. Colonoscopy once against confirmed indeterminate UC.

 

May 06: Started 40 mg Pred. Weaned down to 10mg by July 8, held at 10mg until December 20, tapering 1mg every 2 weeks, 5mg a day as of February 14. All this plus 10 Salofalk tabs daily.

 

Jan through May 2007: Suffering from severe headaches and vomiting likely caused by prednisone.

 

Feb 26 07: Started Imuran with continued success.

 

May 12 07: Final dose of prednisone after 50 weeks!


Suesse
Regular Member


Date Joined May 2006
Total Posts : 45
   Posted 1/27/2008 10:54 AM (GMT -6)   
Thanks everyone :) I forgot to mention that I had an allergic reaction to Salofalk so I can't take any salicylates (sp?).

I will ask my consultant about starting oral pred at the same time as Imuran. I think she's afraid of using too much at once because although the ulceration is acute it's in a smallish area and also I'm doing a very hectic course at Grad-school so she doesn't want to interfere too much with my attendance there.

So far I think I've tried dipentum tabs, colifoam, predfoam, pred retention enemas, salofalk tabs, salofalk enemas, asacolon supposotories, and probably more stuff I've forgotten ;)

Thanks again :) Take care! x

MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 648
   Posted 1/27/2008 11:29 AM (GMT -6)   
Two different animules, pred and Imuran. One is supposed to be a short-term fix, one is a long-term fix. You probably need to go on both for a short while, then hopefully you can get off the pred after a couple of months.

I've been on Imuran for around six years. It's worked wonders for me! And, like most folks here, I hate the pred. It's a necessary evil, however, in some circumstances. :-(

Mitz
Sporadic proctitis since about 1985. Mother had J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Pred, two courses of Flagyl, then Vancomycin finally got rid of it. 2001 colonoscopy dx'd left-sided UC. . Treated with prednisone, Rowasa, Asacol. Asacol not working, switched to Imuran. Three small flares since in 2002, 2005, and 2007, brought under control with steroid and Rowasa enemas. Lap Chole performed October 26, 2007, after gall bladder attack in June, '07.
Daily meds: 100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression), many vitamins and Primadophilus Reuteri


PMH1957
New Member


Date Joined Dec 2007
Total Posts : 14
   Posted 1/27/2008 12:31 PM (GMT -6)   
Just wondering about remission and coming off meds. I was diagnosed with UC (left-sided) in 1997. At that time I was put on asecol. After several flare-ups, I got a new GI and was put on Colazal. I have had 4 really bad flares, where I had to be hospitalized, in the 10 yrs that I have been diagnosed. Most of the time I have done pretty well keeping my colitis under control.

My question is, "If I am not having any symptoms (remission?) would it be safe to come off the meds?" I really hate taking medicine. My doctor said I would have to take the meds (Colazal) for life, as long as they were working. Just wondering?

jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 1/27/2008 12:37 PM (GMT -6)   
PMH, the medications help to maintain remission and prevent colon cancer. We do see people who go off the medications, but sooner or later the flare comes back and sometimes it's less easy to control then. It's up to you, of course, but as for myself, I'll keep taking my maintenance meds.
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


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 1/27/2008 1:57 PM (GMT -6)   
Imuran from my understanding is a maintenance drug, even while in remission you should stay on your maintenance drugs (why did you come off yours?) Prednisone is considered a "booster" drug, used to help with symptoms until your maintenance drugs like Imuran kick in.

So by rights you should probably go on both of them and if you are having issues with proctitis you should be on a steroid foam enema, which can take time to kick in as well.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


CityWoman
Regular Member


Date Joined Jun 2004
Total Posts : 123
   Posted 1/27/2008 3:43 PM (GMT -6)   
I am not a gambler. My meds will hopefully give me a longer term remission. I will stay on my meds.

Imuran is to help give us a better chance of staying in remission, but like life nothing is 100% guaranteed.

Judy

February 04: Rushed to hospital with severe blood haemorrhage. Diagnosed with indeterminate UC in 2/3 of my bowel. Treated with heavy doses of Pred; started Salofalk tabs and sups.

 

April 06: First major flare – more haemorrhaging. Colonoscopy once against confirmed indeterminate UC.

 

May 06: Started 40 mg Pred. Weaned down to 10mg by July 8, held at 10mg until December 20, tapering 1mg every 2 weeks, 5mg a day as of February 14. All this plus 10 Salofalk tabs daily.

 

Jan through May 2007: Suffering from severe headaches and vomiting likely caused by prednisone.

 

Feb 26 07: Started Imuran with continued success.

 

May 12 07: Final dose of prednisone after 50 weeks!


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5163
   Posted 1/27/2008 10:32 PM (GMT -6)   
You couldn't pay me enough money to take Prednisone again..... What about Remicade?

Imuran and 6-mp both work well for many UC'ers.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


Suesse
Regular Member


Date Joined May 2006
Total Posts : 45
   Posted 1/28/2008 1:27 PM (GMT -6)   
Pb4 -
I came off meds altogether because it was considered that I had a very mild case of UC and therefore just trying to relax and changing my diet was supposed to be all I should do.
Unfortunately although it's in a small area it's not at all mild, my new doc says it's severe. I've had daily bleeding (and lots of embarrassing leakage of blood) for 8 months straight now!

Keith (ks1905) -
I don't think Remicade is used here (in Ireland). Apparently we're the second richest state in the world but have one of the worst healthcare systems!
Some of my friends are GPs (general physicians?) and they said that combining oral steroids with Imuran is considered too harsh.

I'm going to suggest to my consultant (GI) that I take oral steroids for a few weeks combined with Pred retention enemas to see if that can stem the bleeding. I may end up bloated and single though ;-)

PS Why does everyone hate Pred? Is it 'cause of weight-gain and mood swings?

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5163
   Posted 1/28/2008 7:02 PM (GMT -6)   
What's ironic is that there is a Remicade manufacturing facility in Ireland that is being built; completion in 2010.

Prednisone = insomnia, bone loss, increased appitite, mental lapses, mood swings, swollen face, and i could go on and on about Prednisone.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


Suesse
Regular Member


Date Joined May 2006
Total Posts : 45
   Posted 1/31/2008 10:18 AM (GMT -6)   
Ooooh, that doesn't sound like fun! Thanks again, I think I'll be on pred for at least a few weeks though. Gotta do something :-(

AshNH
Regular Member


Date Joined Jul 2007
Total Posts : 208
   Posted 1/31/2008 10:28 AM (GMT -6)   
I agree with few others who have suggested pred for short term(not that I like pred, either) to get things under control and then imuran for the long term. If you haven't already, I would also suggest diet changes to see which help you or what causes you problems.
Ash 39 NH, vegetarian
Current meds: Asacol 12/day, Imuran 150mg
L-glutamine, Rowasa


expecting226
Regular Member


Date Joined Jul 2007
Total Posts : 402
   Posted 1/31/2008 10:34 AM (GMT -6)   
Suesse - I do not hate Prednisone. I have used it each time I've flared (4 times total over many years), and it has worked every time. I have never needed to be on it for more than a short, 8 week taper. I really do not experience many of the side effects, other than some insomnia during the first week or two and the occasional hot flash. I have never had moon face, hair loss, mental lapses or mood swings from it. I have had three bone density tests and have not experienced any bone loss from Prednisone use. There are some of us who tolerate it quite well.

Because the Prednisone has the ability to push me right into remission (literally, within days of starting it), I prefer it for my flares. The Asacol and Rowasa I use on a daily basis keep me in remission during the interim (typically, years in between flares). Until I get to the point where the mesalamine products are not working anymore and/or I become steroid dependent, I will not consider the harsher immunosuppresant drugs (i.e. 6-mp, Remicade, etc.).

I'm sure there are going to be people who disagree with me, but I just wanted to offer you a different perspective on short-term Prednisone use versus long-term use of immunosuppresants.
Current Medications:
- Asacol (4 pills, 3x per day)
- Rowasa (1 enema daily, as needed)
- Folic Acid (1 mg, 1x per day)
- Calcium (600 mg, 2x per day)
- Prenatal Vitamin (1x per day)
- Iron (2x per day)


Suesse
Regular Member


Date Joined May 2006
Total Posts : 45
   Posted 1/31/2008 1:08 PM (GMT -6)   
AshNH - I went on an exclusion diet a few years ago (Not good for me - I got VERY skinny and weak!). I found out that wheat, especially white flour, milk, spices, garlic, onions, alcohol and, oddly enough, Caesar Salad are all to be avoided.

expecting226 - thanks for your perspective on this. My Mum has UC too and she occasionally takes short courses of steroids and has no problem, but other friends of mine with Crohn's and UC hate oral steroids. Unfortunately my only maintenance option is Immuran as I'm allergic to so many meds.

Thanks everyone who posted, it's really helpful to get your advice :)

Take care x
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