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07-29-2015, 10:06 AM   #1
Lenah
 
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Join Date: Jul 2015
Location: Ontario
Information on Imuran

Long story short, I was diagnosed with ulcerative colitis about a year and a half ago. I was in denial for about a year, and for the past 3 and a half month I've been trying to get back on track and actually learn about my disease and get it under control.

I'm having a colonoscopy in just under 2 weeks to find out how much my disease has progressed at this point. I'm currently on prednisone and Salofalk.

The salofalk doesn't seem to be keeping me in remission because the first time I got off the prednisone, I started flaring up only days after. My GI is strongly pushing towards putting me on Imuran, which I'm a little bit nervous about.

I've done some googling, but I was wondering if anyone could give me a little more information than say the Web MD fact sheet. Such as stories, what to expect, personal experiences and the like.

Thanks in advance!
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Imuran - 200mg daily
07-29-2015, 11:33 AM   #2
DJW
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I've been on it for 2 years. The first 7-10 days were the hardest.

Fatigue was the worst. I was nauseated and didn't have an appetite. Felt like I had the flu but it DID pass and now I have no problems taking it
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Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

Visit Crohn's and Colitis Canada:
http://www.crohnsandcolitis.ca/site/...tis_Canada.htm

Living in Ontario with no drug benefits?

Trillium Drug Program:
http://www.health.gov.on.ca/en/publi..._trillium.aspx

Dave
07-30-2015, 12:13 AM   #3
FrozenGirl
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Agreed. First week was hard with fatigue but by week 3 it has calmed down such that it was barely perceptible difference energy wise. No other noticeable side effects. I was on it for about a year. Took a while to kick in (about 3 months) but I was on it with remicade and the combo was working great. Unfortunately my white blood cell count kept dropping so I sadly had to go off it.

I believe there is a test to see how you metabolize the drug which may be helpful in determining dose if your doc uses it. Blood work needs to be done regularly. Usually weekly for a month, then monthly then every 2-3 months if you are stable.

It sounds like it might be a good step up medication wise for you. Good luck!
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Dx: Ulcerative Colitis, Nov 2013
Currently on:
Mezavant 4.8g
Vitamin D 1000iu
Calcium
Tecta 40mg
Remicade: 600mg, every 4 weeks
Methotrexate: 15 mg (injection)
07-30-2015, 05:45 PM   #4
Ian_H
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Hey guys

I agree with the first week being the worst. I mainly had upset stomach taking it but I found if I took it early in the morning with food it helped. A couple weeks in I really couldn't tell any side effects. It's been 3 years now and I have had probably 4 flares 2 being hospitalized which was way better than before I started imuran. It does have success and works so just be positive and ride that 1st week out. You can do it. I am also starting remicade next week in conjunction with Imuran due to the imurans efficacy has diminished over the years. I hope it works for you and good luck!
08-02-2015, 04:28 AM   #5
Kiwiindubai
 
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Hi,
I have been on Imuran for one week now and I noticed a couple of little side effects - my tummy was upset and the erythema nodosum (I had before starting the Imuran) was worse. All settled down now and I feel fine. I am also taking Entocort and Asacol.

My first blood test is on Thursday.

Good luck
08-14-2015, 11:18 AM   #6
Lenah
 
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Location: Ontario
Just a quick update:

On Monday I had my colonoscopy. Unfortunately, the colitis has spread through my entire colon. (I was kind of expecting this.) The good news is that my GI saw very little inflammation when she scoped me.

Next Monday I'll be starting Imuran. I hope this works for me!
08-15-2015, 06:39 AM   #7
hawkeye
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It's been awhile since I started on Imuran (I was first prescribed it in 1991) and was on it from 1991 until 2014 at varying doses (before surgery I was taking 150 mg/day). I did not have any side effects, and can't remember if I had any nausea the first week.

I was on both Imuran and Salofalk and think the Imuran is what kept things under control for the majority of the time I have had Crohn's.
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Diagnosed since 1990
Current Medications: None currently. Was on Imuran (150mg/day) and 5-ASA (3000 mg/day) as maintenance meds prior to surgery
Surgeries: Left hemicolectomy 2014.
08-15-2015, 06:55 AM   #8
lisadc1
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My side effects were not good. I was on Imuran for six weeks and developed severe pancreatitis/hospitalized. Once it was out of my system, it subsided. I hope all goes well for you. Best wishes!
08-27-2015, 11:12 AM   #9
Lenah
 
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Update:

I started to flare again almost immediately after coming off the prednisone I was on, so I had to make a call to my GI to have some more prescribed.

After being on the Imuran for a week and a half now, I'm noticing that I'm having a lot of joint soreness in my wrists and thumbs and knees, and that my skin has been feeling on the sensitive side. I really hope this goes away soon. No nausea/fatigue/upset stomach, so that's a plus.

I also managed to pick up a UTI the other day, which was rather upsetting. It came out of nowhere, and the symptoms showed up extremely fast/suddenly. Within 30 minutes I went from being perfectly fine to feeling awful. Spent the afternoon at the hospital, but the emergency doctor who took care of me was fantastic.
08-29-2015, 02:59 PM   #10
Ian_H
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Sorry to hear that Lenah

I have been on Imuran for 5 years. I had joint pain in my hips and knees for the first few months but it went away for me. The uti is weird though. Could be from the Imuran or maybe something completely unrelated. What did your doc say about tithe UtI?
12-30-2015, 02:15 AM   #11
tots
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Prednisone can do that to you my Dr told me. I have had trouble with UTIs.
MY last one happened over the weekend and my Dr water me to go to the ER, well
I was literally there 8 min, it is a free standing emergency room, I was charged $1800!?!

Hope your doing better,


Lauren
__________________


Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!


Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


:
12-30-2015, 11:24 PM   #12
ronroush7
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I have been on Imuran for several years. Within the last year, they had to cut it in half because there was too much in my blood. Wishing you the best.
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