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Imuran reactions??

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Ulcerative Colitis
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Posted 12/16/2007 11:31 PM (GMT 0)
Hello, new here. Dx'd 1 year ago with UC has yet to really calm down and neither have I!! started with galbladder, then bleeding ulcers, hiatal hernia, then UC...blah blah blah..have taken asacol not much effect, lots of pred calms for a few weeks. tried IMuran..2 weeks in started joint pain to the point where literally crippled me and couldn't walk, then tongue swelled and another hosp visit. Also take protonix daily. Dr. just switched to Azathioprine (everything says same as Imuran..is he an idiot or am I??) within 4 hours of taking had severe vomiting (wasn't sure if had food poisoning..did just Toxic Hell like an idiot!!), been sick for 4 days now with nausea, the dreaded d, fever, chills and crippling joint pains again. Has anyone else had these kind of problems with Imuran or Azathioprine?? Dr. keeps talking about putting on Remicade but afraid will not work. Wants to try Humara? but not approved for UC yet...I am just tired of being sick, about to get fired from job from missing so much work, and am trying to get through last year of college!! THIS SUCKS!!!!! I know I'm being a baby but sometimes u just gotta be!!!
Posted 12/17/2007 1:52 AM (GMT 0)
I was on Imuran for two weeks last February and they were the worse two weeks of my life. Similar symptoms to you, I have been on Protonix ever since, BTW. Thought a hole would burn through my chest.

My GI really really really wanted it to work (and so did I, have been on Prednisone way too long) so when I started to get the reactions he took me off the Colozal instead, hoping it was that med, so I had all the symptoms from the Imuran PLUS my flare got worse. I felt nauseous much of the day and then a bit better at night, so I decided to try taking the med at night -- up all night so sick I almost had my husband take me to the ER. Anyway, I called my Doc the next day and said I was no way taking anymore Imuran (Azathioprine IS the same medication, it's the generic) as I was pretty sure one more dose would kill me.

I have been on Remicade since July. Worked wonders the first two doses, the last one not so much but was going through some severe stress in my life so maybe that had something to do with it. I had my fourth infusion this morning and am keeping my fingers crossed.

Why not give the Remicade a try, at least if your insurance will cover it. This morning out of curiousity I asked how much the stuff cost, anyway, and the nurse said $4,000! Humira is in the pipeline for UC approval; give the Remi a try if your Dr is willing and insurance will pay -- some people on this sight way they didn't get results til after their 5th infusion but that they acheived remmission, so isn't it worth a shot?

What meds are you on now? It's helpeful if you can put them in your signature, you'll see a lot of us here do that. It helps people respond to you.

Meesh
Posted 12/17/2007 2:32 AM (GMT 0)
Thanks for the reply..starting to feel like only one having trouble with Imuran/azathioprine. I'm hoping now Dr. will push for Remicade, he is afraid will have same reaction to it as Imuran. Anything is worth not feeling this crappy(pun intended), which is what I keep telling Dr. How do I deal with the whole work/school thing is the biggest stress too. No $$$ is stressing out my girlfriend who tries but just doesn't quite understand why I can't get out of bed or go to work....
Posted 12/17/2007 2:37 AM (GMT 0)
put meds in signature but not showing up when click include signature...ARGHHH!!! to be a newbie!!!
Posted 12/17/2007 5:45 AM (GMT 0)
Imuran and Azathioprine are the exact same drug; one is the brand name and the other generic. Remicade is a completely different sort of drug and works in a very different way, so there would be no reason to expect a similar reaction. It has worked for quite a few of us.

Has your doctor tried any of the other 5ASA's for you? Some of us have better results from Colazal, and this is usually tried when the Asacol doesn't help. Also, have you tried any rectal meds? Mesalamine enemas help many people, as do short-term Prednisone enemas.

Please take time to educate yourself about UC, as this will help when you talk to your doctor. It is a chronic disease, and important that you can be an active participant in your own management of the disease. It's vital to have a GI who will listen to you and explain things to you. If yours doesn't, it may be time to consider a different doctor.

Regarding your signature, be sure to click on "submit" after you type the text, then get back to the board by clicking on the "Forums and Chat" tab at the top. Sometimes if you use the back arrow, your signature won't save correctly.

I hope you're soon feeling better. You've come to the right place here, and you'll get a lot of good information from the members.
Posted 12/17/2007 7:06 AM (GMT 0)
Currently taking 9 colazal a day.
Posted 12/17/2007 12:40 PM (GMT 0)
I see your med list! Welcome!!
Posted 12/17/2007 5:05 PM (GMT 0)
sorry to hear everything you are going through rotgut! Have been on azathioprine for 2 months and side effects for me so far has been being tired and being in a haze most of the time, I don't have the clarity I used to.

I'd say switch GI, if you have problems w/the name brand I would think you would have problem w/the generic too!!

Give remicade a try, you don't know till you try it!

Also for Humira, my friends Dad just finished the drug trial now he is on it and doing better, he's had UC for a very long time. But again, he was part of the trial it did not go through insurance.
Posted 12/17/2007 8:44 PM (GMT 0)

I had similar reactions to Imuran and have always had bad reactions to 5 ASA drugs as well.

Withing 48 hours of starting Imuran I was in the hospital, unable to walk and in isolation until they discovered my liver "failure" was due to the Imuran.

They seriously were going all "House" on me....asking me if I had travelled to foreign countries, running every test they had available. I told them up front that I believed it was a reaction to the Imuran.

Posted 12/17/2007 10:29 PM (GMT 0)
Hi, I took both imuran and aza. For two weeks fine then I threw up badly..so stopped switched to the other and the same exact thing. My dr. thought it was in my mind because i didn't really want to take it but the side effects clearly state vomiting.ugh...I have been using the canasa and enemas with some relief but will not go back to those other drugs!
Posted 12/18/2007 2:00 AM (GMT 0)
otgut, not sure why your doctor is waiting for Humira; you can start on Remicade and if it doesn't work or stops working there'll be the Humira in the pipeline waiting for you. Is your doctor your primary care provider or is he or she a GI (specialist)? Sounds a little clueless to me. I was very hesitant to start the Remicade but am glad I followed my GI's advice and did. The first two doses worked miracles, the 3rd, not so much, but the infusion I had yesterday, my 4th, seems to have kicked right in. As soon as I go 48 hours without blood or excessive BMs I am going to call my GI to see about tapering from the Prednisone.

Can you seek a 2nd opinion? My first GI was a quack -- it may take you a couple of doctors before you find one that you are comfortable with and who can help you achieve remission.

This time last month I was in a really bad way and could barely function. Hang in there, as soon you hit the right med or med combination you'll feel a lot better and life will be good again. I know it's hard, you'll have ups and downs as meds that had worked may stop, but then you'll find something else. And in the back of your mind remember that surgery is the "cure." I'm not ready for that myself and am not sure I ever will be, but I do know that if things get too unbearably bad that is an option.

Meesh
Posted 12/18/2007 4:30 AM (GMT 0)
Imuran (Azawhatever) started out okay, just tired and hazy, blood tests fine, then week 3 brought basic liver failure- shooting pains in ribs, vomiting, trouble breathing, really really horrible stuff. Now I'm waiting for insurance approval on Humira and I'm back on the Pred- yay :(
Posted 12/18/2007 7:03 AM (GMT 0)
I tried Imuran...OMG<  it made me throw up within a half an hour of taking it.  Everytime!  It was weird tho,  I didn't feel "sick"  with nausea or anything, I'd just take my meds, and basically throw up until everything was out of my stomach,  and go about my business again, feeling fine.  That is the only one that made me vomit. 
Posted 12/23/2007 2:43 AM (GMT 0)
Hi Rotgut - your story is shocking to me because Imuran and Azathioprine are the EXACT same thing. Azathiorprine is just the generic name for Imuran. There is, however, a slightly different of Imuran on the market called 6-Mercaptapurine ("6-MP") and occasionally, there are people who can't tolerate one of the drugs but can tolerate the other. Generally speaking, the two drugs are exactly the same except one of them - I can't remember which one - has some sort of chemical structure called a "tail" that breaks off once digested and for some reason some people do better or worse with or without the tail. in any case, I really can't believe your GI put you back on Azathioprine when you clearly were having a bad reaction to it. That's really bizarre.
Now, for your other comments. First, you are totally not being a baby, at all. This disease is tough when you're flaring and I think it is completely reasonable to be tired of feeling sick, so don't think you're a baby for that. I was in my last year of grad school when I got sick, so I know how hard it is to be sick and in school, but hang in there.
as for drug options, I have heard that 2 out of 3 people on imuran tolerate it really well and 1/3 doesn't. I actually have had absolutely no problems on it so far, though I have only been on it 6 months, but I know that for people who respond poorly to it they often get quite ill, the way you described.
as for drugs, if I were you I would learn to figure out how to be ok with the colazal, and try some of that stuff before remicade, as remi is a pretty serious drug. that's just my two cents, but my feeling is I would prefer to be inconvenienced than on heavy-duty drugs (though I think of Imuran as pretty heavy duty already), but we all approach our disease differently.
in any case, good luck and feel better soon.
Posted 10/4/2013 4:07 AM (GMT 0)
I too have been on Imuran for two weeks. I did experience nausea, although, fortunately for me, it has subsided. What continues to bring a great deal of discomfort is severe chills. I thought, earlier this week, they were diminishing, however, I believe, they are actually worsening. I had been on Remicade for 5 years, until 2 months ago, when I began to have severe chills and nausea. Lab work showed, I was having an allergic reaction to the infusion of Remicade, which is too bad, for the drug worked well to treat my host of auto-immune disorders.

I was glad to see that I am not the only one with chills, for the side effects mentioned for Imuran doesn't mention it. Doc said they will subside over time, but I am not sure. Sorry you are having such problems.
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