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Doc wants me to start Imuran.

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Ulcerative Colitis
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Posted 9/22/2011 8:17 PM (GMT -5)

I have read much about it on Google, but would like to hear from any of you who are or have taken this med.  How dangerous is it?  Side effects you have had?  Did it put you in remission?

How often did you have to go for blood tests?  Is it expensive(the generic). I just checked Medco and they said it's not a covered drug.  I don't know the MG yet as I am waiting for the results from the blood test I took to see if I can take this.

My colitis is left sided(just found that out today) and I have bad mornings, but the rest of the day maybe only 3 bathroom trips. Blood only when I wipe.  But the nausea all day especially while having a bowel movement, is terrible.     Also the urgency makes me nervous of going anywhere without checking the bathrooms first. (I take Lomotil, and it's wonderful,  but I still worry).

So can you please tell me your experience with this drug?  Worth it to you? 

Thanks

Posted 9/22/2011 9:41 PM (GMT -5)
I take 6mp which is similar and I haven't had too many side effects from the medication. I take it before bed, many say if you take it in the morning you may experience an upset stomach or nausea. My 6mp is covered. I take the generic and I believe without insurance, it would cost between 100 and 200 per month. That is what my insurance reports anyway... I went for blood tests every 2 weeks at first, then I went every month for a while. I have never been able to stop going every month because my WBC dropped too low and I had to stop 6mp for a while and wait until it came back up to normal. Since, I've had to get tests every other week and now I am back to every month. In another month or 2, I should be able to go to every other month or every 3 months!
Posted 9/22/2011 9:50 PM (GMT -5)
I think Imuran is your next step. I was determined to maintain on Asacol even though my doctor was gunning for 6 mp after I relapsed while on Asacol after a pred taper. I said I wanted to give Asacol another chance and I found another doctor.

From looking at your case, I do think your doc is right and the advantages of this step outweigh the negatives, in my opinion.

Ellen
Posted 9/23/2011 8:07 AM (GMT -5)
Thanks to youi both for your answers. Do I have to stay on this for life. or taper off if I go in to remission?
Posted 9/23/2011 9:53 AM (GMT -5)
I'm on Imuran and have been for 6 months now. I haven't noticed any side effects except my hands always look like they want to turn yellow, but they never do they are always very pale white. It sure help me in my remission though. I was taking 50 mg but after the prometheus test my dr upped it to 150 mg and what a difference that made! No more urgency. My blood tests are all good and I guess I'm on Imuran for the rest of my life, but it's better than what I was going through. I was never so sick in my whole life and really thought I was on my way out. I never had so much blood and diarrhea in my whole life then I went anemic and had to had blood transfussions, but all I can say is thank God For Imuran. It really put me back into persepective. I feel like a new person!
Posted 9/23/2011 11:26 AM (GMT -5)
once you stop taking any of the meds there is a high chance of relapsing. I used to stop taking my sulfasalazine when I felt good but would always get sick again, I think that's what turned my proctitis into pan colitis.

I have been on imuran for a while now. I think it makes my mind a little fuzzy and that I have a clearer focus when not on it. It is worth it to me right now at this time in my life.
Posted 9/23/2011 6:36 PM (GMT -5)
I've been on 150g Azathioprine (imuran by another name) for around a year and a half now, and after the first couple of weeks I've had no sides effects, it did take a couple of weeks for my body to get used to it. I've been in remission now for over a year.
I asked my GI about coming off it when I was in remission and he didn't have the stats handy but put them in a letter to me later - a 50% chance of relapse in the first year and anything up to 80% in the first two to three years. - there is no source for these numbers so I've taken them as his experience plus a little bit of - scare her into not forgetting to take her drugs!
I reckon we'll have the coming off conversation in a few more years - assuming nothing goes wrong before then.

The first three months there were lots of blood tests - after that they've decreased down to once every three months.
The drug is working well for me, but I know you can find lots of people here who it hasn't worked for.
Good luck with your decision.
Posted 9/23/2011 9:13 PM (GMT -5)
are all these blood tests covered by most insurance?  Also is the Imuran(generic) expensive?
Posted 9/24/2011 1:15 AM (GMT -5)
I get infections easily. So I can not take Imuran, Remicade, ... People who take these meds are at an increased risk for developing serious infections that may lead to hospitalization or death.

I know someone who is taking Remicade. She has started getting infections and has no idea that it is probably due to the Remicade. She didn't believe me when I told her that infections are a side effect of the medicine. Her GI never mentioned it. She continues to take the medicine. I don't understand why there are GIs who don't discuss this with their patients.
Posted 9/24/2011 11:31 AM (GMT -5)
Joylu - I just began azathiprine, 50 mgs, two weeks ago. So far, no side effects, however the doctor did tell me it would take about 2-3 months to kick in. The only thing I have noticed is my appetite, I'm decreasing pred, on 20 mgs now, and I'm finally not eating like a garbage can. I'm not sure if this is related or not. I left the drs office with a perscription for Imuran and it was substituted at the pharmacy for azathiprine, and my bill is $1, however I, well my mom, has had terrible time with the bills for the blood tests. We were billed something ridiculous and thank goodness it worked out, but I would definately just call beforehand because it did give us alot of headaches over the bill. Good luck!
Posted 9/26/2011 3:25 PM (GMT -5)
I've been on Azathiaprine for over 4 years now.  It took a few months to start working, but I have been in remission since.  At first some side effects were headaches, heartburn, tiredness, but they all went away.  The generic of Imuran is Azathiaprine and should be pretty cheap.  I've been on 200 mg and get my bloodwork done every 3 months.  Most of the time the bloodwork is pretty standard and not too expensive, although mine is covered by insurance.  Once in a while they order a test to see how the drug is metabolizing and this one is expensive. 

Best.

Posted 9/26/2011 4:05 PM (GMT -5)
to add the imuran did increase my liver enzymes but not to a dangerous level. Also, in regard to infections and dangers of getting colds, we are all different. I was on imuran and remi at the same time and two weeks ago, I had a cold (coughing up phlegm), fever and pink eye, the cold lasted about 1.5 weeks, the fever was on and off for two days and the pink eye better in two days. You just never know.
Posted 9/26/2011 7:24 PM (GMT -5)
I have been on Imuran for a year.  It is 10 dollars a month for me because it is covered by my insurance.  The blood tests are also covered for me so I don't pay anything for those.  I have no side effects and yes it has put me in remission when nothing else did.  For me the risk of being in a constant flare is far greater than the risk of Imuran.  My bloodwork has always been perfect.  Generally blood work is required more often when you first start Imuran - every 2 weeks, once a month and then every 3 months for the first year.  Since my labs have been so good for the last year I am now moving to a schedule of having blood drawn every 6 months.

I am lucky that all this is covered by insurance, I don't know what it would cost otherwise.  Lialda was more expensive(and did not work as well)  even with insurance than Imuran for me...

 

Posted 9/26/2011 8:26 PM (GMT -5)
I've been taking Imuran for a little over two months, and I am feeling pretty good. Almost normal. I am still tapering pred, so I won't really know how effective it is until I am completely off the pred. When I first started taking it, I did have some nausea and headaches. These side effects went away after a few days. I do take mine in the morning, so if the nausea had persisted I would have taken it at night.

I had blood drawn after one week, then two weeks later. My next blood work will be three months from the last time. Not too bad. This is covered by my insurance, and I get the generic form of the drug, and my copay is only $4.

I was scared to start taking this drug, and I had to stop breastfeeding my son to take it. It was a big deal for me. But I am glad I did it, as I was in really bad shape. Although Imuran does have some serious side effects, I think the risks are low, and I think being on prednisone for any amount of time is so much worse. I'll be quite happy if this drug gets me off the pred and can keep me off of it forever.

Good luck.
Posted 9/26/2011 9:43 PM (GMT -5)
Thank you all for this information. I feel much better after reading it.
Posted 9/29/2011 8:07 AM (GMT -5)
My doc also wants me to try 6mp or Imuran and I am really really having a hard time agreeing to it. I guess I'm just a nervous type and am scared when I read the risks. In addition I always seem to be the 1 percent of people who get the rare side effects. I also have had low white counts in the past. Even when whites are normal they are low normal. I am going crazy trying to decide what to do. My symptoms are usually mild but since mid July I can't seem to get out of this flare. Even on Prednisone...formed stool but still small amts of blood. Usually Prednisone will be enought to obtain a full remission and I taper and stay fine. Not this time.
M
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