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Fed up with Imuran

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Ulcerative Colitis
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Posted 2/7/2015 5:28 PM (GMT 0)
So I posted like a week ago about imuran causing nausea and vomitting. Well I called my doctor and he bumped me down to 50mg and then on Monday I go back to 100mg but split doses.

I was doing pretty good all week but then yesterday the nausea came back and I threw up. Also threw up this morning. And it seems to be between 1-3 hours after I take the imuran that I throw up. Can't call the dr until Monday though.

The worst part is I feel like I'd be fine without the imuran. I really feel like the inflammation my dr saw was because I was due for a remicade infusion 2 days later so it had started to wear off (although I've never experienced it wearing off really) and the stress of starting school again. I wish he could have just done pred like he did but then when my taper was done just see how I was feeling.

My question is: is it possible to just stop imuran and see how I feel? I'd ask my dr this of course and not just do it on my own. I know I can try 6MP probably but I really just wanna see how I am. Can you do that?
Posted 2/7/2015 5:32 PM (GMT 0)
DId you take imuran with food? Azathioprine should be taken with food to reduce side effects.
Posted 2/7/2015 5:37 PM (GMT 0)
Yep I always take it with food. And I've tried different times of day (always with food) and that doesn't make a difference either. I just find it weird that I was ok for a while and then it started. Before when I was on 100mg too. It wasn't right away. It's like my body left it alone at first but now thinks it's bad and wants it out.
Posted 2/7/2015 5:50 PM (GMT 0)
How long were you on it before you noticed side effects? Because it can take 2-4 months before it gets up to a reasonable dose in your blood so you probably wouldnt notice side effects until then.

However, I would recommend not stopping and starting imuran. Not only does it take a long time to reach effective levels, but youll increase the chances of developing antibodies to remicade without it. A smaller dose may help though, if remicade is in fact keeping you in remission
Posted 2/7/2015 6:30 PM (GMT 0)
Started it on Jan 5th and noticed side effects a couple weeks ago. And if I stopped imuran I wouldn't start it again. I don't think a smaller dose of imuran would be worth it though. Only place I could go is to 25mg and at that point it's like why even take it?
Posted 2/7/2015 6:47 PM (GMT 0)
Sorry you're feeling so crappy, I had the same symptoms from Imuran and started just taking it in the morning with food. What I had to do was take a few bites of food (oatmeal or toast), then the pills, then a few bites more etc, essentially surrounding the pills with food and it worked.
Give that a try and I hope you feel better!
Posted 2/7/2015 11:55 PM (GMT 0)
Maybe you should try taking it a couple of times on an empty stomach. What do you have to lose?
Posted 2/8/2015 12:04 AM (GMT 0)
Imuran always kicked my butt when I took it. I tried 6mp at some point and the same results. it wasn't just the nausea, but also 24/7 fatigue and 10 hour sleep times... which made it worse than the disease itself. It can be a tough medication to stomach, though nausea is a well documented side-effect in a moderate percentage of those starting the drug. It might subside for you if you continue it long enough.

I went off it despite my doctor's wishes, but didn't flare luckily. You should discuss with your doctor about discontinuing it if it persists. I wasn't able to deal with the side-effects, but I was lucky in that it didn't really do anything for me (and I wasted a year taking it).

There is the possibility that remicade is working by itself... not sure why he insisted on combo therapy when it's supposed to be THE big gun drug for UC.
Posted 2/8/2015 2:51 AM (GMT 0)
BeatUC- I do kinda do that. Not exactly the same but I have eaten a bowl of cereal, taken imuran, and then ate a clementine. Same results.

Gary- Good point lol. Might as well!

Guardian- I have also been exhausted lol. I honestly feel like I could just lay down on the ground and fall asleep sometimes lol. I'm definitely calling my doctor on Monday. Especially if I throw up tomorrow too cuz then it'll be 3 days in a row. I'm pretty sure he put me on it to help prevent antibodies from forming against the remicade. I'm guessing that's what he figured was happening when I had a flare and inflammation. I really just wanna see how I am going off. If I start to flare I can always do a quick round of pred and start 6mp or shorten the length between infusions. My doctor is really good though. He'll listen to what I want and figure something out. I just don't know if I can handle 1 more day of imuran before I can call him.
Posted 2/8/2015 3:50 AM (GMT 0)
@mcfarl73, Sorry to hear Immuran is causing you major side effects. You should stop it after doc advice (don't they have on call support over weekend?) Otherwise, please call your primary care physician for advice, or even the pharmacist. Is your flare under control now? Hope you feel better. You'll need to find a different drug to keep remi efficacy. Hope you feel better soon.
Posted 2/8/2015 5:02 AM (GMT 0)
No on call person. They just say to call the hospital if it's an emergency. Maybe the recording says something about speaking to a nurse but I don't know. She doesn't know my case so she wouldn't really be able to help. I talked to my pharmacist before I was throwing up and she said I'm doing everything right and I should be used to the med by now so she thinks it's a reaction I'm having to it. Haven't talked to her since going down to 50mg but I bet she'd say now that it's definitely my body reacting badly to it and I'm probably not just going to get used to it. My flare is under control right now. It was after just a couple days on pred. And even now that I've been done with my taper for a while now I'm still doing fine.
Posted 2/8/2015 2:27 PM (GMT 0)
Have your blood tests been ok? When I was on it, the first month I was fine. Then when the dose increased I had the most horrible heartburn & indigestion of my life. Dr told me to take Zantac and that helped, but then my liver enzymes went wonky and I had to stop taking the azathioprine (generic Imuran). My understanding is that the nausea and indigestion can last a few months as the body adjusts to the med, but then goes away. As long as you aren't having any problems that show up in your blood work, try to stick it out a little longer. Check with your dr about what you can take to make you feel better until your body stabilizes. But definitely keep up with your blood work.
Posted 2/8/2015 3:29 PM (GMT 0)
I usually took my 6mp before bed but I didn't have a problem with nausea. Andrina battled nausea with imuran for a long time and she ended up finding a solution that worked and she's been in a really good remission for quite some time. You should reach out to her and ask for tips. Have you tried zofran?
Posted 2/8/2015 3:45 PM (GMT 0)
I haven't gotten a blood test since I've been on it yet. I'll ask him if there's anything I can do. Wonder if dremamine would help.

I haven't tried zofran. That might be the next step though.
Posted 2/8/2015 4:12 PM (GMT 0)
I am sorry I hope you feel better soon.
Posted 2/8/2015 4:37 PM (GMT 0)
You have been on it over a month now. You really should be getting a CBC and LFT to check your blood counts and liver function. Some drs do it once a week for the first month or so you are on it. My dr did it once a month. In fact, I had to sign a paper agreeing that I would get the tests each month before I could start taking it. Ask your dr. about the tests. They are important when on this med. These are just normal blood tests ... not the expensive Prometheus test that people talk about that would come later if there is a question about how well it's working

Hope you find some relief and that it works out well for you!
Posted 2/8/2015 4:51 PM (GMT 0)
That's crazy that you haven't had blood work. I had it every 2 weeks and once before starting 6mp. Something doesn't sound right about this doctor. Definitely try zofran, when I was flared up and really nauseous, it was a life-saver.
Posted 2/8/2015 6:20 PM (GMT 0)
Something is definitely wrong here if you are not getting regular blood tests. I would discontinue immediately and start asking questions.
Posted 2/8/2015 6:34 PM (GMT 0)
Listen to your body. You said it feels like it wants the medication out. It is telling you something important. The fact that you have not had any liver function tests is also troubling, as others have indicated. I personally would not subject my body to another dose before calling your doctor....I don't see the point. Your colon is not going to explode if you don't take your dose tomorrow morning.

Don't be afraid to ask questions and advocate for yourself.
Posted 2/8/2015 7:23 PM (GMT 0)
I'm calling him tomorrow. The only problem is I'm heading back up to school tomorrow after spending the weekend at home (where my dr is) so I'd have to see if he can order a blood test near where school is because I won't be back home for a couple weeks.

I haven't thrown up yet today. Feeling a little nauseas but when I sit down I'm ok. Just very exhausted. Like if I blink too long I might just fall asleep. I just don't want to take it anymore. Even if I have a blood test and it says everything is good. I feel like remicade is enough for me.
Posted 2/8/2015 7:25 PM (GMT 0)
Try just remi it cant hurt?
Posted 2/8/2015 7:37 PM (GMT 0)
DMC that's what I want to do. I mean you can still get a flare every once in a while on remi right? Doesn't mean it has stopped working. It wasn't even a bad flare and it was a stressful time and I was due for an infusion soon anyways.

I'm gonna try and wake up really early tomorrow and see if I can run and get a blood test before I head back to school. I don't have to head back until 12:30ish so if I could get one in the morning I'd feel better.

Thank you guys for all your help and concern. He really is a good doctor. I've had bad doctors before him so I know lol. I just need to learn to fight a little more. After my last colonoscopy I felt like I was completely drunk off my ass. Did they change the anesthesia because I didn't feel that way the other 2 times. But since I was so loopy I wasn't really able to ask questions and stuff cuz I was just so out of it.
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