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10-19-2013, 03:26 PM   #1
Mike001
 
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Join Date: Jan 2013

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Next stop: Imuran

Hi all,

I was diagnosed with Crohn's back in January of this year. The doctors call it a mild case, with symptoms of extreme amounts of gas (including bloating and associated gas pains and really quite foul-smelling flatulence), occasional loose BMs (but nothing excessive), a fistula (literally a giant pain in the ass), and extreme fatigue. Since the actual amount of inflammation and ulceration was judged to be mild, they started me on Pentasa and nothing else.

For a month or two, it was a wonder drug. The gas was gone, the BMs were normal, and I had the energy levels of a normal human being again. Unfortunately, over the last few months, I've been spiraling back down to where I started. I'm now essentially back to where I was in January. The gas pains and flatulence are bad enough (I feel sorry for my wife), but the fatigue is killing me. It's hard to work, hard to enjoy life, all I want to do is sleep and sit and do nothing. I am mildly anemic, and the fatigue seems to be a combination of that plus Crohn's malnutrition plus just general malaise.

I have my next follow-up in two weeks. My GI mentioned he was considering putting me on Imuran at my last appointment. I have to admit I'm quite scared of this drug given some of its possible side effects and complications, but I'm so tired (haha) of the fatigue and gas problems. Even if the GI is still on the fence, I'm going to try to talk him into it, I think. The Pentasa just isn't cutting it, and I'm sure the long-term consequences of Crohn's that isn't fully under control are something I'd like to avoid. Plus I'd just like my life back.
10-20-2013, 04:57 PM   #2
KayleighMeek
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Sorry you have been having a tough time recently sounds like a good plan you and your GI have, you shouldn't have to put up with feeling that way. I didn't have success with imuran but a lot of people on this forum have hopefully someone will be along soon with more experience of this drug.
Hopefully it won't be long until you have energy back again and start feeling well.
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Current meds
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Previous meds
Pentasa, Aza, 6mp, Remicade, Humira and Sulfasalazine
10-20-2013, 06:23 PM   #3
hawkeye
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I have been on Imuran since 1991 with no side effects.
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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.
10-20-2013, 09:08 PM   #4
junkboy64
 
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ive been on Imuran (Azathioprine) for 3 months about, and it seems to be doing the job!! i can function pretty much like a normal person. i still have some issues, but they are mild and i can live with them. im told that i may still get better yet because Imuran (Azathioprine) takes a while to fully work.
10-21-2013, 03:41 PM   #5
zilla7777
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I think it's worth a shot. It doesn't seem to have worked for me (Given that I have had 2 flares whilst on it but the side effects were every mild for me too. Occasionally my hair would thin a little, then after a week stop for a number of months. Not that bad a trade off for a decent shot at stopping Crohn's.
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Diagnosed mid 2009
Past Tx: Prednisolone, Enteral Nutrition
Current: Azathioprine, Omeprazole, EN supplements, Small bowel resection to remove 2 strictures.

"How we survive is what makes us who we are!" - Rise Against

10-21-2013, 09:27 PM   #6
Crohn's gal since 1989
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I have been on Imuran since 1991 with no side effects.
I haven't experienced any side effects from Imuran either, just neon yellow urine, but that doesn't bother me! That's nothing compared to living with Crohn's!
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Bonnie

Diagnosed 1989
Asacol,Pentasa and Entocort (didn't work in 2005 and didn't work now)
Done with Prednisone 09/07/13
Azathioprine (Imuran)150mg no longer working
Developed allergic reaction to Humira injection!
Currently trying Remicade with Methotrexate
Still trying to get into remission!

Ileocecol resection surgery
September 14th, 2013.
55cm small bowel removed!
10-22-2013, 10:01 AM   #7
junkboy64
 
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yup, i also have the neon yellow urine from the aza...
10-22-2013, 12:56 PM   #8
bettyboop12
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I've been on aza for 11 months and it has given me my life back. I would not say it has cleared up everything as I still get gurgling but no pain.

Neon urine?! Not heard of that one! May be i did notice and thought I was dehydrated! I will look out for that one!
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Just started actimel sept 13
10-26-2013, 08:10 PM   #9
kh216
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Location: Barrington, New Jersey

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I have been on aza before and I am now on its sister drug,6mp. I tried Pentasa before but it did absolutely nothing for me. I think giving Imuran a try is a good idea. However, please know that it generally takes about 3 to 6 months to build up in your system and to notice an improvement. Also, it is very important to get your blood work done at regular levels. Your doctor will need to monitor your CBC (Complete Blood Count) and your liver through the Liver Function Panel.

I am now on 6mp and Lialda and I think the combination works well for me.
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10-26-2013, 08:34 PM   #10
ThePear
 
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I haven't experienced any side effects from Imuran either, just neon yellow urine, but that doesn't bother me! That's nothing compared to living with Crohn's!
Ah yes, the bizarre coloured urine. Mine's more of a key-lime acid green, but only for the first pee about an hour after I take the Imuran. Thereafter, it's back to normal colour for the rest of the day.
11-21-2013, 02:15 AM   #11
Nbees
 
Join Date: Nov 2013
Location: Las vegas, Nevada
I'm currently on hummira but my doc also wants me on imuran. This drug makes me nervous! And I had asked about upping the dose of hummira. Any taking the hummira?
11-21-2013, 11:26 AM   #12
junkboy64
 
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from what i understand taking imuran with the Humira will help you not develop antibodies to the Humira.
11-21-2013, 11:30 AM   #13
Nbees
 
Join Date: Nov 2013
Location: Las vegas, Nevada
I'm not understanding what your saying!


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11-21-2013, 11:34 AM   #14
junkboy64
 
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when you take humira your body can make antibodies to fight out the humira. taking imuran will help keep the antibody count low, so the humira works longer. at least thats my understanding.. i take imuran, and its no biggie. there CAN be side effects.. the worst i have is a dry mouth sometimes.
11-21-2013, 11:39 AM   #15
Nbees
 
Join Date: Nov 2013
Location: Las vegas, Nevada
Ok thanks for the feed back!


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