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08-23-2009, 01:31 AM   #1
Sopdaws
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Imuran - misinformed

Hi,
I was wondering if anyone can help. I went to see my gastroenterologist on Friday and he has put me on Imuran, to be honest he didn't give me alot of information which concerned me slightly.

He has told me I will be on this for the next 3-5 years, which seems like a very long time. Reading the long term side effects I am not sure if I really want to go down this route. Please could anyone let me know if they have been on it this long? I am currently on 30mg Prednisolone, tapered from 50mg. However I am struggling to get below 30 without a flare of symptoms.

Initally when I went to the docs I thought they would treat me with pred, I would improve and not have to be put on long term medication?

I would really appreciate some advice, such as peoples long term and short term experiences with Imuran? Any advice on natural alternatives if I was to decide not to take this... any other advice much appreciated.

Thanks for reading,

S
08-23-2009, 03:14 AM   #2
imisspopcorn
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I was on Immuran for about 1 year before I had to have a resection. The main worry with the med is risk of Lymphoma. I had no problems with this med. It was hard to tell if the fatigue I experienced was from the meds or the disease. You also have to be careful when you are ill with colds etc...Esp. sorethroats. Going to an immune modulating drug like Immuran is a common step when people have a hard time getting off the Prednisone. Personnally, I prefer Immuran over Prednisone. I hope you can get some relief soon.
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08-23-2009, 07:45 AM   #3
gibby
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Imuran is azathioprine right? It saved me from surgery, been on it nearly 7 years which is longer than most people, and recently found out with a random blood test a few weeks ago that it is making me toxic to it so is beginning to damage my bone marrow. Its only because nothing else has worked that i had stayed on it for so long, and i dont regret going on it because it was fantastic. Didnt get many side effects, a bit of hair loss when i had to be on prednisolone at the same time, but quickly resolves. However with this test result it looks like they will have to take me off it which i am dreading, as i only have two or three bad flares a year at present, and dont want to go back to frequent courses of prednisolone, the last time i took steriods was nearly a year ago, not bad going.
So dont worry, there are side effects like any drug, dont worry yourself too much over them as it is a small chance you will experience any of them, and if it gives you 5 years of relief from this horrible disease it is worth it!
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Yvonne

Everything happens for a reason, no matter how crap it seems,it shapes you for better things in life. Keep smiling!
Dx UC 1991 when i was 8 years old:

Hospitalised for 2 weeks in July 2011 with burst appendix and peritonitis, surgery, IV antibiotics and a long recovery...

Lovely Meds...
*8x500mg Pentasa (Mesalazine)
*3x50mg Imuran (Azathioprine)
*Mebeverine/Colofac PRN for pain
*and B12 injections every 3 months
*Asacol PR when flaring +/- prednisolone

08-23-2009, 11:08 AM   #4
mharvey90
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Hello, just as gibby said, any major or life-threatening side-effects are rare. Also with azathioprine, as I'm sure your doctor mentioned to you, it is very important to get regular blood tests while you are on it, so that your doctor can monitor your liver enzymes, etc because it has a tendency to throw some things out of whack. With your blood work being regularly monitored, your doctor can see any abnormality before it gets too out of hand, (like in gibby's case.) Also, I was on azathioprine for quite a few years when I was younger (starting at about 10 years old) so I think that if your doctor thinks it will benefit you, and with regular blood work being done, you shouldn't worry. Good luck! Hope you start to feel better!
08-23-2009, 11:56 AM   #5
BP_57
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Hi, I was on Azathioprine (Imuran) for about 4 years and suffered no side effects at all. As people have already mentioned you will be monitored closely while taking it (I had full blood count every month and liver and kidney function every 3 months) so anything abnormal will be spotted. The side effects listed on the patient information leaflets are just POSSIBLE side effects and in most cases are very rare. You might find you're more susceptible to everyday infections such as a sore throat.

Personally - and this is just my personal opinion, i'm not a doctor and others may disagree - but i'd rather be on Azathioprine than Prednisolone.

I hope we've managed to put your mind at rest a little. Azathioprine/Imuran works very well for a lot of people and it could be the drug that keeps it under control for you so i'd say give it a try. I'm afraid I know nothing about natural alternatives so I can't help there i'm afraid.
08-23-2009, 05:49 PM   #6
markymark19857
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Ive been on Imuran for like 6 months now, so far no side effetcs - i thought around 4 months that it could be helping out a bit but just recently i got another big flare (just in time for school) ....hopefully I get things resolved with my diet over the next week but this drug hasnt bothered me at all yet and I havent been sick with a sore throat or anythign sicne Ive been on it!.....good luck to you
08-23-2009, 07:31 PM   #7
kromom1
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Just thought I'd mention that Imuran can take 3 months or more to really start working. I've used it without side effects, too, at least not any that I can really were from the Imuran. Good luck! I hope it helps you.
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Diagnoses: Crohn's 8/07; steroid-induced diabetes 11/07; Remicade-induced Lupus 02/09, shingles 7/10, and hypothyroidism.
Medications: Entyvio, Methotrexate, prednisone, Protonix, Synthroid, fish oil, calcium, multivitamin, glimepiride. Failed Pentasa, Entocort, Humira, Imuran, 6-MP, Remicade, Tysabri, and LDN.
08-24-2009, 07:18 AM   #8
MD24
 
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Location: Alain, United Arab Emirates
just started taking it a week ago and should be on it for the next 5 years
when i first read about the side effects i was scared to death but i trust my doctor and am sure it worth the risk (not a huge risk as i learnd that terrible side affects r rare)
good luck
08-25-2009, 01:23 AM   #9
littleone
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that's more than my dr told me about humira. all he told me when he ordered me that (mind you i had only been on asacol for 6 weeks before that and didn't bother trying anything else) is that it is an injection i give my self once every 2 weeks (except for the loading dose which was 4). and from what i've read about the imuran it seams WAY safer. yes, they can both cause cancer, but i would do anything to try imuran. the loading dose made me sooo sick, i took it 4 weeks ago and haven't even gone back to my usual, even tho my usual is still pretty awful.

what were you taking before? i know of someone who tried asacol and it didn't work but tried lialda and it did.
09-03-2009, 10:16 AM   #10
Sopdaws
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Hi,
Thanks for taking the time to respond - I feel a little better about taking it now and I find it really helpful to hear other people's opinions! I have now been on it for a week and everything seems to be okay, although I can't tell if it's working but as Kromom1 mentioned it can take some time.

To be honest I have been on high doses of Pred now for quite some time so I am willing to try anything to get off it! The moon face, weight gain, mood swings not fun! Hopefully the Imuran will kick in soon... :P
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