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Should I turn Azathioprine/ Imuran down?

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Posted 9/30/2012 4:21 PM (GMT 0)
On Monday, my doctor will offer me a drug which will go with steroids that will "keep me well after I taper off the steroids" this got me thinking that it could be Azathioprine. My doctor will tell me what it is and talk me through it on monday, but if I get offered this drug should I turn it down? I am really worried about the risk factors involving T-cell Leukemia or whatever type of Leukemia it can cause. Especially since I read that most reported cases of this with this drug have been in IBD suffering young adult males, and I am in fact a 16 year old male

Any advice would be appreciated or facts that disprove this hopefully smilewinkgrin

Post Edited (CMJ96) : 9/30/2012 10:36:20 AM (GMT-6)

Posted 9/30/2012 5:04 PM (GMT 0)
You have valid reasoning but then you need to know all of your options. More than likely being on Imuran will be way better than staying on prednisone forever, even at low doses. Your best option is to find something that works that isn't steroids, isn't the immunemodulators like Azathioprine, and isn't in the biologic family. All can have bad consequences. You will probably get many here that say they have taken Imuran with very little or no problems but the fact is that it can be a time bomb waiting to go off. Whether it will or not is anyone's guess. I avoid all of these options for this very same reason but I am blessed with a somewhat mild case of UC and have the luxury of refusing all of these. Many that have taken these drugs for years and eventually had surgery almost always say they wished they had done the surgery sooner and skipped these meds totally. It burns me up that the doctors are so la de da about these meds which can basically wind up killing you in order to get rid of your UC. Often they don't mention the consequences of it all. I guess they're hoping you don't read the warnings when you pick up the prescription. Sometimes I think their thought process is only that they are your gastroenerologist and it is their job to get rid of your UC and if you get cancer, that's another doctor's job to help you with that.
Posted 9/30/2012 5:17 PM (GMT 0)
Thanks for the great response, I will use steroids for now (never had any problem with them before and used them lots before for other diseases such as asthma) And then I will assess each option I have
Posted 9/30/2012 7:20 PM (GMT 0)
CMJ I need to mention that steroid use also has detrimental side effects- Severe bone loss,
doesnt happen right away but the effects show up 10 years down the road. Its not IF it happens,
Its WHEN it happens. Steroids should only be used to slow symptoms until another drug can take hold and work.

Carlie
Posted 9/30/2012 7:28 PM (GMT 0)
I take 6mp which is very similar to Imuran and I have been doing well since starting it. It comes down to whether you NEED to take something else or if you think there is a chance you will get off of steriods without the addition of a new medication? My GI worked with me to try to get me off steriods without pressuring me to start 6mp, she definitely didn't push it on me, nor did she rush me to start it, infact, quite the oppoosite. The turning point for me was when I was emotionally falling apart from the side effects of prednisone and I was becoming really depressed. Knowing what I know now, I made a mistake trying so hard to avoid the inevitable (6mp). I should have started it way back when I started having trouble tapering. I gained a lot of weight and I am not happy with my physical appearance since being on prednisone. Was it worth this lifetime of never looking the same to avoid 6mp for 4 months? NO WAY. HOpefully I get back to looking like I did prior to steriods but it's been a year, it's not hopeful.

Perhaps you would be more comfortable with Remicade or Humira? Though, they have their own risks and they haven't been on the market as long as 6mp/Imuran so the studies don't go back as far. everything we do, consume, ingest could have long-term consequences that are unforeseen. I am just going to live one day at a time and try to live each day to the fullest. If 6mp takes me a few years early, so be it. At least I am not on prednisone and feeling completely defeated, unable to work a decent job, barely able to support myself, flaring...

Are you using rectal meds? Have you tried antibiotics? Vitamin D? Diets? I hhad already tried all of that without luck before considering 6mp.

Best of luck to you.

Posted 9/30/2012 9:29 PM (GMT 0)
Hard desicions with these meds for UC. ... goodluck
Posted 9/30/2012 10:54 PM (GMT 0)
notsosicklygirl
in regards to the alternative treatments, no, all I have is probiotics, I don't do any of the other stuff. My doctor has only told me about conventional treatments. Thanks for the support however, I would love to try paracite therapy, but that is highly unlikely
Posted 9/30/2012 11:12 PM (GMT 0)
Look up autoimmune therapies on google. Also OvaMed. They are both worm therapy but very expensive. AIT is human worm, Ova is pigworms. Pig worm is safer but i've heard maybe slightly less effective. I have seen some people have success with worms and others tried them and ended up without any results. I'd hate to piss away all that money for no result but there is no other way to know.

Search here for "helminthic therapy" and you will find lots of info.

Are you open to surgery? That is a long recovery but it would keep you off medication.
Posted 10/1/2012 1:35 PM (GMT 0)
I am not sure if I can do that in the Uk, since the NHS covers my expenses, although it would be an interesting choice, thanks for the help
Posted 10/1/2012 2:55 PM (GMT 0)
I just started Imuran on Friday, I turned it down a year ago. I haven't had any side effects so far, but its only been three nights. I'm giving it a shot since 5ASA don't work for me that well.
Posted 10/1/2012 3:14 PM (GMT 0)
The risk for leukemia/lymphoma while on Azathioprine is miniscule and if you keep up with your blood work, any risk is eliminated.
I've been on Azathioprine for over 8 years now with no issues whatsoever and it turned my UC around.
It seems to be a very effective drug, I'd consider it seriously.
Posted 10/1/2012 3:55 PM (GMT 0)
You've also got to keep in mind that there is like a 20% chance UC'rs will come down with colon cancer at some point.
Posted 10/1/2012 3:59 PM (GMT 0)
I tried Aziothioprine and had some sever immediate side effects, the main one was within days of taking the medication my joints began hurting immensly and I started feeling like a 90 year old man, zero energy pain in my joints and hips like i've never experience. Told doctor, told me to stop taking the meds, I was fine two days later.... I wished it had worked for me, I know it's worked for others but there are "short term" side effects witht he drug as well as I am witness to personally so it's not jsut long term side efects, but I also agree with beatUC, the leukemia irisk is miniscule compared to the benefit of the drug if you are a moderate to sever UCer....
Posted 10/1/2012 6:44 PM (GMT 0)

garylouisville said...
You've also got to keep in mind that there is like a 20% chance UC'rs will come down with colon cancer at some point.

If you read medical studies you will see a big variance in this.  There are several factors that must be considered including severity, extent of disease and age of onset of UC.  http://www.ccfa.org/resources/risk-of-colorectal-cancer.html

 

Posted 10/2/2012 9:27 PM (GMT 0)
Have you been put on 5-ASAs before (Lialda, Asacol)? If not the doc might be referring to these.

I've been on generic Imuran nearly 3 years now with no issue. In fact I'd say the drugs gave me my life back. The most important thing is to just go get your bloodwork done regularly. Regarding cancer: the drugs don't actually cause mutations that cause cancer, but since you are suppressing the immune system, your body cannot fight off the tumor cells as well. That's why it's recommend for people on these drugs to stay out of the sun.

I'd also like to point out that the side effects of steroids over the long term are way, way worse than Imuran/6mp. Steroids can cause bone issues, deformities, and diabetes over time. It also causes tumors in rats with long-term dosing. So, in reality, it's pretty bad stuff.
Posted 10/3/2012 12:47 PM (GMT 0)
Imuran (azathioprine) gave me pancreatis. It is not for everyone. But I believe it did work for me until my body began to react badly to it. I haven't tried 6MP yet as I have just got remission by another way.


My adrenal glands are rather weak. Which probably explains why just 5mg prednisolone is so effective at stopping a flare in my case. I believe that my weak adrenal glands are the core of the colitis problem.

Foods that harm the adrenals are listed here:
http://www.adrenalfatigue.org/adrenal-fatigue-diet


I recently quit tea and coffee. I mean totally quit. Not even a single cup for a 'treat' .
This was hard as I love tea. Dairy doesn't bother me so much but I don't eat it in huge quantities.
Also dropped chocolate in any shape or form. Celery/ tortilla chips fill the cravings.

Anyway colitis is in remission now and back pain (possibly RA, no official DX) has greatly diminished. I will stay off tea and coffee forever if necessary.

I suppose the ultimate test would be to go back on tea and coffee and see if colitis flares.
For now I am just enjoying feeling human again.
Posted 10/3/2012 4:43 PM (GMT 0)
rikkidan, you realize there are teas with no caffeine like herbal teas and roibos tea, right? Have you tried them? I love teas as well and find them quite tasty (especially roibos). White tea also has negligible caffeine content.
Posted 10/3/2012 5:07 PM (GMT 0)
Coffee is a no no, but tea is fine for me, it never ceases to amaze me how this disease effects us all so differently.
Posted 10/4/2012 2:11 PM (GMT 0)
been on Azathioprine for 2 years now, happy with it!

Had a few things get infected a lot easier, and to start with colds lasted a bit longer. But nothing worse than that. Oh it used to make me really sleepy first few weeks too.
but i get my blood tested each month which you get used to, and would reccomend it. Plus when you're on it you get your flu jab free. (might be a UK thing, god I love the NHS)
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