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Crohn's Disease
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Posted 3/4/2010 10:51 AM (GMT 0)
How many people on imuran , and how long have you been on it?
Does it scare you?...

Thanks

Carmen
Posted 3/4/2010 12:03 PM (GMT 0)
Im starting mine at the end of the month. Would like to see what others feel about this
Posted 3/4/2010 1:28 PM (GMT 0)
Been on 6mp (esentially the same thing) for some years now and done very well, as have many many people on this board. Overall the imuran/6mp immunuosuppressants seem to me one of the most effective maintenance drugs for Crohns. Unless you have side effects early (white cell suppression in a small single-digit-percentage of cases) most people do very well with these drugs. The low dose we take is well under the threshhold cited for cancer connections.

Posted 3/4/2010 1:46 PM (GMT 0)

carmen said...
How many people on imuran , and how long have you been on it?
Does it scare you?...

Thanks

Carmen

Aside from the ultimate "Miracle Drug" we know as Prednisone, Imuran has been miracle #2 for me, without the side effects.

After tapering off Prednisone onto Imuran i was in remission for 2 1/2 years, lived a completely normal life almost 100% symptom free, except for a few times i got myself too physically run down and CD poked its head out for a day or two. I have been lucky that i tolerated Imuran VERY well, i was on 250mg/day to start and tapered down to 175mg/day by the end of the 2 1/2 years (a month ago was the end of that 2 1/2 year stretch, got way too stressed out and went weeks with only 4-6 hours of sleep a night, CD has returned for me and i am back to 225mg/day)

Does it scare me? Well any drug scares me per se, but i am scared of Prednisone a LOT more than Imuran, imuran pretty much has 0 long term side effects, yes there is an increase in chance of getting lymphoma cancer, but the increase in odds is something like from 1 in 100,000 to 1 in 10,000.....living CD free for long periods of time is worth that very small chance IMO.

If you can tolerate Imuran long term, depending on how much of the drug you can handle, you should have nothing to be afraid of, its in the scale of things, a very safe drug, that has lots of research done on it and is basically tried, tested and true. I hope it works out as well for you as it has for me!

Posted 3/4/2010 1:49 PM (GMT 0)
I'm on imuran 100 mg since around Christmas and I tolerate it very well... no side effects, and although it's potential long term side effects are scary I'm not going to concern myself right now because to me quality of life is worth it!
Posted 3/4/2010 2:08 PM (GMT 0)
I have been on Imuran twice. No, it doesn't scare me. Any drug has possible side effects. If you spend all of your time on what-ifs you'll make yourself crazy. You just have to hope for the best. The only thing I'm scared of is never getting better.
Posted 3/4/2010 5:36 PM (GMT 0)
I didn't find it scary - especially not compared to the steroids. I'm on 125mg (maximum for my weight) and have been for 18 months now. At first they were making me throw up a lot but I figured out how and when to take them (first thing, after a bit more food than I was having) and now it's all ok. The funniest thing was seeing the radioactive yellow pee for your first one or two after taking them - at least you know they're in there!!

For me, the only problem has been that they don't work that well - I've had two flare ups while on them and only the steroids seem to do the trick. Trying Humira for the next one.

Hope it works for you!
Posted 3/4/2010 5:50 PM (GMT 0)
I've been on 6MP for over 12 years. I've been on other medications along with it, but basically that is the only thing that I have been on consistently since my last resection, the dose has varied though based on basic liver test and Prometheus testing. At the levels that we take this type of drug the risk is not the same as it is for cancer patients, it is still there, but not at the same level. But there are risk with all of our drugs. I will probably have to change/stop soon because my liver levels are slowly creeping upward, but I have gotten 12 years of scientific research out of it and there are so many more drug options out there now. My philosophy has always been that I want to enjoy my life now and whatever I have to do to achieve that I will (within reason), No one is guaranteed tomorrow, so suffering through life because the side effect of a drug MIGHT harm you just doesn't make sense to me, if the risk is minimal.
Posted 3/4/2010 7:48 PM (GMT 0)
I've been on and off imuran for about 10 years. It never put me in remission, but I think it might have helped a little.

Lots of CDers are now taking doses as high as ppl with transplants.

There's more than just a risk of white cell suppression and cancer. It could also reduce platelets which caused bleeding problems and could also cause liver toxicity.

Mind you, I didn't have these issues although when I tried a higher dose of imuran, red dots showed up on my body. I had to stop the higher dose and went back to 50 mg.

In any case, sometimes the benefits outweigh the negative side effects. Being ill with untreated CD can be more serious than going on the meds.
Posted 3/4/2010 8:37 PM (GMT 0)

Roni said...
I've been on and off imuran for about 10 years. It never put me in remission, but I think it might have helped a little.

In any case, sometimes the benefits outweigh the negative side effects. Being ill with untreated CD can be more serious than going on the meds.

I dont think anyone uses Imuran to actual induce remission, but to keep someone in remission after they achieve it through some other drug, mainly Prednisone.

In the case of being ill with untreated CD can be more serious than going on meds, i was going to say thats being a little giving, i think we all need to remember at times, being DEAD from untreated CD is more serious than going on meds. I am pretty sure a great deal of us would not be here if we never got treated in any which way. Think of those that have had to have surgery, even without that surgery, they probably wouldnt be with us. At this stage in my life i would rather have a few complications and be alive for a shorter lifespan than not be alive at all.

As someone said above, even though its sometimes hard to not think about it, you have to live in the moment and not worry about what the future is going to bring, whether its good or bad, you'll just end up going insane.

Posted 3/4/2010 9:02 PM (GMT 0)
I've been on 200mg imuran for over a year now it does not keep my crohn's in remission. I have recently just added remicade (had my first 2 infusions) so hoping that will work and it can keep me off the high doses of pred that i seem to need to keep me in remission. I have not had any side effects from the imuran at all. The risk of cancer is very very low (not much more or a risk than we all have just breathing the air and living) Lately my disease has been so out of control i think i would take anything if it would give me a life back though lol. But no i wouldn't worry or stress about the imuran there are alot worse drugs they put us on that have side effects to worry about!
Posted 3/4/2010 11:20 PM (GMT 0)
I've been on Imuran for nearly a year and a half, and it kept me in remission for nearly a year. It's had no side effects for me so far, except for perhaps a few sinus infections (but I tend to get those anyway without the medication). The only con is there's regular bloodwork involved.
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