Question for all folks that have been or on Imuran!

Hi All,

I got back today from my Sig scope today. I had the full C-scope back in July and it showed inflammation in first 30cm of the colon. However, since then I has been on enemas and my daily 2.4G of mezavant and started VSL3 about 1.5 months ago when I went off enemas. SO, todays results showed first 10cm of rectum totally clean and looking good! (good news) but the sigmoid colon has some inflammation and active disease with a few "deep" ulcers as my Gi called them. Her thinking is that the mezavant isnt working anymore and enemas dont go high enough to treat this area? Is this true?

Anyway, she is instentent to put me on Imuran now to put me in full remission. I am very relucatant to go on Imuran hearing the horror stories on here and the pain in the ass of blood work all the time. If any of you could shed some light on your experiences going on imuran and how severe was your disease when you went on it? Once you go on can you come off?

PS- I'm currently only having 1-2 BM/day always solid and formed with every few days I have small amount of flood in the stool.

if i had your symptoms, i would not add imuran at all. i know you have inflammation, so i'd try diet or supplements to at least help the situation. it just seems like such a heavy duty med to add if you are not suffering that much.

i did 6mp when i was having about 12 bms a day with pain and urgency. the bloodwork is no biggie to me, but if you hate getting bloodwork, then you might not like the drug. you have to get it once a week at first for less than a month and then once every three months. i get bloodwork more frequently than every three months for other things so i don't think it's that big of a deal.

Hi Joanna,

Thanks for your input as well! I am thinking the same thing and that brings peace to me hearing you were having 12bms a day. If that was my case then I would definitely go on Imuran right away. But again, to my last post the whole incease cancer risk scares the crap out of me! (no pun intended!) so if this is true I'll probably go on, but if it isnt, I might I might try switching 5-asa drugs? or double my doage to 4 pills/day..

I don't know the exact statistics to compare. Having UC inflammation increases your chances of getting colon cancer, not greatly, but enough to make a statistic from it. Same thing with Imuran. There is a definite risk, although not high, that you could get cancer. I would say if you are only having a couple of BM's per day your UC is pretty much under control and that you have a whole lot lower chance of getting cancer than someone who is going 10 times per day for years. While your doctor can be commended for wanting to put you into a complete remission, the fact is that in order to stay there you will have to take Imuran forever or face another flare if you get off. There are the cancer statistics to think of with Imuran but you also can't ignore the regular side effects that it gives you which often aren't pleasant. Few people take Imuran long term that don't experience bothersome side effects. You are doing better than I am and I think I'm doing well enough to forgo all the bad stuff. If my UC was a lot worse then I would have to reconsider. Looking at it objectively I think everyone should choose surgery over these meds but until I walk a mile in their shoes I will not know what I would decide if I were in that situation. I hope I never get that bad.

I think you have to make this decision. The words deep ulcers sounds scary to me. I think I would have the doctor define exactly what that means.

i have a history of pancolitis but in patches throughout my colon.  i used lialda (i think this is similiar to mezavant, if someone can chime in) which cleared the top part of my colon and i religiously used rowasa which cleared my rectum, and i was left with about a 4 inch isolated patch of inflammation in my sigmoid.  in my opinion, this is the spot that the lialda and rowasa couldnt reach. 

 

my flare started in 2008 and by 2012, still flaring, nothing could heal up the inflamed part of my sigmoid. ( believe me i tried almost everything).   i was still having about 6 bms with blood and urgency a day. my gi suggested imuran, she didnt force it on me. 

 

 i weighed my options, and i felt the  constant inflammation in my sigmoid was as bad or worse than the risk of cancer. so i took a chance on imuran, with the idea that i could stop if i wanted to and meanwhile other drugs may come out.....

 

anyway, i started imuran june 2012 and i am at about 98% now, with anywhere from 3-4 bms, formed, with blood every once in a while, very mild urgency, can hold till i get to a bathroom) thats ON imuran! 

 

your symptoms sound really really mild to me, given what your scope says.  i might try a few other things first if i were you such as, increasing your oral med 5asa to the highest dose, and maybe looking into that new entocort like drug.....

good luck.....

I was on Imuran for almost 8 years. Unfortunately it stopped working for me.

I did bloodwork every 3 months to ck my liver function. A handful of times I did prometheus tests to make sure I was at the appropriate dose. I've been very, very thin on and off the last 8 years but I metabolism Imuran fast. I think I started at 50mg and ended up at 150mg before I stopped. I went off of it cold turkey last year. No issues stopping.

I had no side effects from it.

Thanks all for your advice and opinions! I have started to double up my mezavant to 4.8G/day and am going to do that until my f/u appt with my GI in a few weeks. I'm leaning towards doing what I am doing but if things start to even get a little worse I'll probably start the imuran and give it a chance, but first Iwant to try paleo or somesort of "gi" diet.

I just started 6mp, same general thing as Imuran (slight different in how it is metabolized by the body). And I was initially scared of the side effects until I started reading up on the odds of them.

The odds of getting killed in a car crash are 1 in 5,000 (or 0.02%).

"The odds of getting cancer or non-Hodgkin lymphoma while on 6MP are 4 people out of 10,000 (or 0.04%) of the people who take it. To keep that in perspective, on no medications, just a random person on the street in the United States has an approximate risk of 2 people out of 10,000 (or 0.02%). Is it treatable? Can you make it through? Fortunately, more than two thirds of the people who develop these lymphomas are treated completely, and it is not a further problem"

"I often tell my patients that you might have 3 colds a year instead of just 1 or 2 colds a year, and it might last 7 days instead of 3 or 4."

Source: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf