Imuran

[cheeky]

hey all,

who here is on imuran? how do you like it? side effects? has it been helpful?

i went to my GI appt this morning, he said that i definitely have IBD but it was sort of unclear whether it is colitis or crohn's, but likely crohn's based on the narrowing of my small intestine and the area the inflammation is affecting...

i was expecting to get off the prednisone as of March 1st, currently i'm down to 10mg, but he told me that he'd like to slow down my tapering even more, so that i taper off of the 10 mg over 2 weeks instead of 7 days, and today he'd like me to begin Imuran 50mg...

he said he's dragging out the prednisone only because the imuran takes 4-6 weeks to kick in... he said that this medication does not bring on the same side effects as prednisone but i'd need to be cautious when it comes to my blood... and i'd have to regularly get blood work done to monitor my white blood cell count, liver enzymes and kidney...



i guess i was being unrealistic when i thought that maybe pred put me into remission and i'd just be off of medication lol... i really don't want to be on any meds but my GI is very matter of fact and straight up told me that i have to be on medication and when i mentioned wanting to look into alternative treatment he bluntly told me 'no, that won't work. you need to be on this medication or else you will get an obstruction, it will get worse and you will end up with a bag... i've seen it happen before. do as i say'...

so i guess i will stick to the meds, he keeps mention possibility of surgery if this doesn't get better (for the narrowing in my small intestine).

 

[daisy_dueller]

I've been taking Imuran since December 15. i've been taking 150mg every day, and I have not experienced any side effects from it, which is actually quite surprising. I was told that the Imuran takes longer than 4-6 weeks...more like 12 weeks...but as long as it works, I'm happy.

Even though you may be in remission, it's important to be on medication to keep you in remission. i'd rather take a few pills a day than be back in the hospital again!!

 

[cheeky]

I've been taking Imuran since December 15. i've been taking 150mg every day, and I have not experienced any side effects from it, which is actually quite surprising. I was told that the Imuran takes longer than 4-6 weeks...more like 12 weeks...but as long as it works, I'm happy.

Even though you may be in remission, it's important to be on medication to keep you in remission. i'd rather take a few pills a day than be back in the hospital again!!

well i think he meant that it takes 4-6 weeks before imuran is in my system.. i don't know, he just wanted to make sure that it overlaps my prednisone so that i am constantly on a med.

you're right, it is best i just take a few pills to avoid the worst case scenario

glad that you have had a good experience on this med, hopefully i'll be as lucky.

 

[Agent X20]

I've been taking it for 18 months. It will take about 12 weeks for it to start working properly. It has had a beneficial effect overall, and as my wife noted the other day, when I'm ill, I'm not as ill as I used to be! So far the blood tests/liver function and all that are OK. Saw the specialist yesterday, and he said that it's not realistic to take me off... but as everything's going OK, I'm not worried about that.

 

[cheeky]

well my next appointment with the GI is on April 30th. and he wants my follow up colonoscopy to be during the summer... so i guess it's because it does take that long for the imuran to kick in.

great, i'm just glad i'm getting off of the prednisone! : )

 

[My Butt Hurts]

Hi Cheeky -
I have been on Imuran since November, but I started Remicade at the same time, and just came off of pred at the same time that I started them. I don't have any side effects so far - but I can't tell if it's the Imuran or the Remi, or the combo of pred and still on pentasa that's working.
Yeah - even in remission you will most likely be taking some type of med. I was on sulfasalazine for my longest remission, and pentasa for another. I'll gladly take meds 3 times a day than chance a flare.

 

[Kirby]

I've been taking Imuran for 14 months with no noticeable side effects. I also find I don't get as sick when I do get sick.

 

[broadwayblondie]

I have been on Imuran since September. I don't mind it... except it makes me morning pee smell funny. Anyone else experience this? I wish I didn't have to be on it though, all of the side effects scare me.

When I first got on it, I got sick a lot easier. I think my body has adjusted to that now though. My hair got a little thinner, too. Stupid medicine!

 

[GoJohnnyGo]

Yeah, my doctor has mentioned Imuran. Likely my next course of action.

 

[Cookie]

I was taking Imuran for the last year. My doc started me out at 50mg/day and ramped it up to 150. He said you have to start out low and let your body adjust. He used the analogy of turning on hot water, which I thought was pretty good. Anyway, I was eventually ramped up to 150mg which he thought might be on the border for someone of my weight (125 lbs.). After being on 150mg for 4 months, I complained of constant fatigue. I thought it was from the flagyl I have been taking because it has made me feel that way in the past. He told me to stop taking the Imuran for a week and see how I felt (also should mention that it never really seemed to be working for me). Well, after stopping for three days, I had way more energy...so I have to assume that it was the Imuran. I am currently taking only flagyl.

On a side note about the Imuran...there has been some discussion on the forum as to whether it should be taken all at once or scattered throughout the day. I was under the impression that I should take 3 pills at once (which I took with lunch), which often resulted in an upset stomach and feeling generally misserable all afternoon. Now that I know that it is okay to scatter the dosage, I wish i had done it that way.

 

[cheeky]

actually i think i'm 150 mg daily too... cuz i take 3 tabs of 50 mg. took my first dose last night and noticed my pee is bright yellow now lol

it's confusing, the bottle label says take 3 tabs daily... i assumed it's all at once, and that's how i took it. the pharmacist didn't mention anything. if it 3 times a day it should've said on the label 'take 1 tab three times daily'

 

[daisy_dueller]

There's a thread about the timing, and I asked Colt that specific question...as he's a nurse...and he said that as long as it doesn't bother you side-effect wise, then it's to be taken all at once. 3 pills, once a day.

 

[cheeky]

ok good, thought so. thanks!

 

[Creepy Lurker]

I've been on 150mg for at least 5 years now. No (serious) side affects. Hard to tell how well it works though. I may be worse without it, but I don't really want to test it.

 

[daisy_dueller]

You know what...come to think of it, I do get tired very easily...so I guess I'm experiencing the fatigue side-effect...but I can deal with that.

 

[cheeky]

hey a couple questions...

#1 - i have been on imuran 150 mg for 7 days now, and i think i'm supposed to get my first blood work check done... i want to go tomorrow BUT, i have a busy schedule at work in the morning and wouldn't be able to go get the blood work done until later in the day...

my question is - am i supposed to fast before i get the blood work? or should it be okay to go without fasting?


#2 - when i saw my GI and he prescribed the imuran, he also decided to extend my prednisone... by telling me to taper off the 10 mg by 2 weeks instead of 7 days... but i don't want to go an extra couple weeks cuz if i taper by 7 days, i'll be finished pred by the first of the month... i'd like to continue the 7 day taper and just get off of this crap...

so i know that imuran takes a while to kick in, but do you guys think it would REALLY make that much of a difference if i get off the pred 2 weeks earlier?

i don't suffer with any of my Crohn's symptoms even as i ween off the pred and am on a low dose... i mean, i figure even if i follow his instructions, the imuran doesn't start working until it's been about 6 weeks to 3 months anyway right?

so really, it doesn't seem like it would make a difference.

has anyone been on imuran without any other med during the first few weeks or is it just standard to always have a transitional med help you while you wait for the imuran to get in your system?

 

[daisy_dueller]

I've never been on Pred...so I can't help with question 2...but as far as your blood work goes, I don't fast before I go in, and my results have all been perfectly normal. I've missed by a day or two, too...and that was no biggie.

 

[cheeky]

I've never been on Pred...so I can't help with question 2...but as far as your blood work goes, I don't fast before I go in, and my results have all been perfectly normal. I've missed by a day or two, too...and that was no biggie.

okay thanks daisy, i was thinking that i shouldn't have to fast anyway because i know that it's only certain bloodwork that requires that but just thought i'd ask since one of my friends was asking me about it... and my GI didn't mention that i had to fast, so it should be ok.