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Crohn's Disease Forum » Your Story » Azathioprine treatment.. I'm scared


03-18-2014, 08:59 PM   #1
kjames
 
Join Date: Mar 2014
Location: campbelltown, New South Wales, Australia
Azathioprine treatment.. I'm scared

Ok guys so my gastroenterologist recently recommended I take 'imuran' to help manage my disease. I was diagnosed 3 years ago and have taken mesalazine in many different doses, all of which have increased, currently I am taking 2x1g tabs twice daily, a majority of the pain is gone but the disease is still active, I've taken corticosteroids in the past and this seemed to be a quick fix.

My question is, how aggressive are the aide effects of azathioprine?
Everything I read seems to be negative? I'm only 23, I don't want to cause myself long term health issues in the future for temporary relief now, am I just being paranoid or is this drug actually beneficial?
I've learnt to live with pain as I expect most of you have, but I would like some normalcy back into my life.

Also I have recently went under an aesthetic procedure to drain a perianal fistulas, that have been making my life agonising.
Is it the presence of the fistulas that has prompted my specialist to take this course of treatment? I'm just a little scared of this drug for some reason. I cant afford to be sick, I'm trying to finish unviersiry.
03-18-2014, 09:02 PM   #2
kjames
 
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Location: campbelltown, New South Wales, Australia
Also the only person I know with crohn's happens to be my mums friend, who took imuran and had severe liver problems as a result... hence my fear.
03-18-2014, 10:13 PM   #3
theOcean
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I've been taking Imuran since last August. I know the side-effects look scary, but they're not very likely and you get regular blood tests when you're on it to make sure you're okay. During the first week you might experience some side-effects -- maybe lightheadedness, brainfog, etc -- but after that it should go away. If you experience anything beyond that, mention it to your GI and just keep tabs on things.

Also, Imuran is usually really effective at keeping you in remission. I was also put on it after developing a fistula, and have been put on Humira as well. The two in combination work really well for treating it. (Or at least, the Imuran is supposed to prevent you from building up a resistance to Humira, which helps the fistula!)
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Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
03-18-2014, 10:14 PM   #4
theOcean
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Also, if it helps: I'm 22 and also trying to make my way through college with this illness, so I can relate. If you have any other questions about either Imuran or dealing with your fistulas, I can try and answer them for you!
03-19-2014, 09:38 AM   #5
kjames
 
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Thank you so much, I appreciate it. I'm a chemistry major, so I've heard a lot of stories, but most people tend to focus on the negative.
I might give it a go, as my pentasa (mesalazine) doesn't seem to be doing much at all.
All I can say is the fistula has made my life and health hell. I've had bacterial infections with 39-40c fevers for days on end, so I'm scared of taking anything that might make me worse.
Fingers crossed
03-19-2014, 02:14 PM   #6
DJW
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Hi. I started Imuran last may. It took a few months for the side effects to disappear. I get regular blood work to ensure everything is good. The first week or so was the worse. The body adjusts. no more side effects. Im always tired but I attribute that to the flare.
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03-19-2014, 02:44 PM   #7
theOcean
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Thank you so much, I appreciate it. I'm a chemistry major, so I've heard a lot of stories, but most people tend to focus on the negative.
I might give it a go, as my pentasa (mesalazine) doesn't seem to be doing much at all.
All I can say is the fistula has made my life and health hell. I've had bacterial infections with 39-40c fevers for days on end, so I'm scared of taking anything that might make me worse.
Fingers crossed
Yeah, Pentasa just helps with inflammation (in more mild cases) whereas Imuran is meant to help keep you in remission as long as it can.

Are you taking any antibiotics to help with the fistula? I was put on cipro and flagyl while I was on it, and also was told to take tylenol regularly throughout the day to help with fever.
03-20-2014, 06:36 AM   #8
kjames
 
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Ive been put on keflex, only problem with antibiotics is the body quickly builds an immunity unfortunately, I took two full cycles so about 3 weeks of it, didn't notice much of a difference in the infection.
I took penicillin past year and it literally hospitalised me, within 3 days I developed a symptom characterised with black stools. Extremely painful and caused my bowels to become extremely inflamed, I stopped eating because it caused more pain, also didn't realise I wasnt keeping my fluids up, the fatigue and delirium hit and I finally decided to go to the hospital, they gave me the green whistle and endone so I became a zombie.. pretty horrible experience, although I think my health at the time was the reason my body reacted so poorly, it was already beaten up.
03-20-2014, 06:41 AM   #9
kjames
 
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Yeah, Pentasa just helps with inflammation (in more mild cases) whereas Imuran is meant to help keep you in remission as long as it can.

Are you taking any antibiotics to help with the fistula? I was put on cipro and flagyl while I was on it, and also was told to take tylenol regularly throughout the day to help with fever.
And by remission what do you mean? My gastroenterologist always mentions that, by the way he describes it is as if he thinks I am normal again.
Since I was diagnosed this disease has gradually gotten worse. If imuran could make me slightly more normal, ill bite the bullet and take it
the pain is annoying but I can handle that, it just the inability to be out for hours without the need for a bathroom, or those horrible sudden flare pains, when you get faint, hot andsweaty, then two minutes later its gone as if it never happened. Haha
03-20-2014, 06:42 AM   #10
Johnnysmom
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My son has been on 6mp (sister drug to imuran) since he was 11 years old. He has had no problems with the med and it has given him his life back. I really hope the Imuran helps get you to a good place.
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03-20-2014, 06:46 AM   #11
kjames
 
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My son has been on 6mp (sister drug to imuran) since he was 11 years old. He has had no problems with the med and it has given him his life back. I really hope the Imuran helps get you to a good place.
That's so comforting to know that, glad your son has his life back, being diagnosed with this at such a young age would be difficult to say the least.

Just another open question, do I take my pentasa alongside the imuran? Or does the imuran replace it?
My gastroenterologist wasnt clear at all.
03-20-2014, 07:09 AM   #12
CDJ
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Just to echo what Johnnysmom has said. My 13yr old son is on azathioprine and it has also given him his life back. He has also had no problems at all with this drug. The side effects are really scary, but they will be on just about all the drugs used for crohns. You need to weigh up how you are feeling now as to how much better you should feel once you are taking this drug. It doesn't work instantly though. It takes between 4 - 6 months to start being effective, so the sooner you can start, the better.
My son takes 3000mg Pentasa as well as 150mg azathioprine daily.
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diagnosed 29/10/2009

Taken off azathioprine Jan 2011 due to needle phobia
carried on with just pentasa until March 2013

6 weeks Modulen Dec 12 / Jan 13

Finally overcame needle phobia after 3 very long years due to getting right help.

Currently on
125mg Azathioprine
3000mg Pentasa
20g Omeprazole
20mg Buscopan
5mg Prednisolone
Isoniazid
Pyridoxine
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250mg zinc
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03-20-2014, 01:51 PM   #13
theOcean
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And by remission what do you mean? My gastroenterologist always mentions that, by the way he describes it is as if he thinks I am normal again.
Since I was diagnosed this disease has gradually gotten worse. If imuran could make me slightly more normal, ill bite the bullet and take it
the pain is annoying but I can handle that, it just the inability to be out for hours without the need for a bathroom, or those horrible sudden flare pains, when you get faint, hot andsweaty, then two minutes later its gone as if it never happened. Haha
When your disease is active, you're experiencing what we usually call "a flare-up"! When your disease calms down, and you stop having symptoms, you're in what's called "remission".
03-20-2014, 02:45 PM   #14
Orchid
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If you can, see if any direct family members have taken Imuran before and if they had bone marrow suppression from it. If so you really need to have your TPMT levels checked before you start taking it to make sure you won't have the same reaction yourself. Otherwise Imuran is a fine drug that does a lot of good for many people with Crohn's.
03-25-2014, 10:57 PM   #15
kjames
 
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If you can, see if any direct family members have taken Imuran before and if they had bone marrow suppression from it. If so you really need to have your TPMT levels checked before you start taking it to make sure you won't have the same reaction yourself. Otherwise Imuran is a fine drug that does a lot of good for many people with Crohn's.
My recent blood test had TMPT written on it, so my specialist must be checking it also, just strange that he gave me the meds with no prior blood works.

How long do people expect to take this medication for? Is it a temporary thing, like a year or so until your back to normal, or is it a forever type thing like pentasa?
03-25-2014, 11:05 PM   #16
Orchid
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If it works, expect to take it for the rest of your life or until it stops working or you develop complications as a result of the medication.
03-25-2014, 11:12 PM   #17
kjames
 
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Oh wow. So it's one of those medications... great haha.
not too keen on the potential bone marrow suppression but I guess you have an equal risk of it with corticosteroids like prednisone. Ah well can't live forever hahaha!
03-25-2014, 11:17 PM   #18
Orchid
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Very few people have TPMT levels low enough for full blown bone marrow suppression (ironically I'm one of them), lower levels usually just mean a smaller, more carefully monitored dose. You probably won't have any serious complications, most people don't, otherwise they couldn't give it to you! It's still important to inform your doctor of ALL side effects you experience as a result of the drug besides nausea.
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