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AZA/6MP How scary is it

Hi All

I have been flaring again while trying to reduce my entocort, and unfortunately last time I spoke with my doctor he said that I may need to try a different medication which would be Imuran or Purinol. I am really scared of these medications. How many deaths or cancers have been reported. I am seriously scared, I do not want to die, but yet I do not want to live with this disease. I know I am overeating or am I . I was doing some reading and found out it is a prime carcinogenic and that it is black box labeled. I know this is to inform us in making a right decision, but when you have no other choice where do you turn.
 
Do the Imuran. My son was on it from 10 to 13 - no problems. He's almost 18 now and on MTX.

Your chances of dying from untreated Crohn's are significant. The chances of cancer, etc. from the Imuran are so tiny it is hard to even measure it without huge studies and lots of people.

Here's a link to two CCFA websites with very helpful informatoin on this subject.

http://programs.rmei.com/CCFA139VL/

http://www.ccfa.org/news/do-ibd-treatments-cause.html
 
Has entocort been your primary drug? I thought Imuran was primarily used in combination with other therapy, not as a primary drug. Are you seeing a go, or is your primary managing you?
 
Thanks

yes I have been seeing a GI, We started out with Prednisone (dreaded moonface) slowly tapered off, than symptoms came back at low dose added entocort in the end and didn't do to bad on 9mg, than slowly tapered from that to 6mg, and well here I am flaring, I brought it back up to 9mg this weekend while waiting to call him on Monday, bringing it up to 9mg isn't helping though, so I think he will put me back on prednisone, but he had mentioned to me a few weeks ago if I wasn't able to go down on the prednisone it would be either Imuran or Humira. Both really terrify me.
looking for some reassurances.
 
I did Humira for several years. Long term steroids is a bad idea, terrible on your bones, plus it makes your intestines weaker long term. It is much safer to be on Humira long term than the roids.
 
I am presently on 6mp (Purinol) for over three years and it has worked out great! The only side effect I had was a lowered white blood count but even that has been improved. I've also been on Imuran with a different GI doctor and didn't have any problems. Only a very small percentage of patients have developed cancer from being on those drugs but like Patricia and Pammy have said, it is much safer to use those drugs and get your Crohns' under control than not to use them. I have been on Entocort in the past too but it is still a steroid like Prednisone and it can cause osteoporosis and other problems down the road. If you decide to go on Imuran or 6mp, your doctor will be monitoring your blood regularly and frequently so if there are any problems, your doctor will either lower the dosage or switch you to another medication. I am personally very grateful to be on this medication.
 
Daunting, both imuran and Humira have potential side effects, both mean you need regular blood checks and for both the end goal is to het you into long term remission (or for imuran, which cannot really induce remission, keep you in remission) for years... So you can eventually manage your Crohn's easily without meds. I've been on imuran from 2003 to 2008, then phased it out, had problems again and have been taking it again since end of 2010. I'll phase it out again next year and this time try to stay drug free thereafter.

Anyway, if you are currently badly flaring, with imuran you will not see ny effects for many months, with Humira you could see effects within weeks. Humira is definitely the more powerful and effective drug. From what you write, Humira might be the preferred choice, but that's just me.
 
I have never been on Humira but I do know that it also has side effects as well. My suggestion would be to check out the Humira Subforum to read about people's experiences about it. As I said, I am very happy on 6mp but if it ever stopped working and my doctor wanted me to try a biologic drug, Humira would be my first choice.
 
It is scary, until it works. Now we are so happy to have the option.

If it doesn't work, find another option.

The cancer cases they found with 6mp all took at least a year or two to develop. That would give you enough time to decide if the benefit is worth the risk.
 
hi,

do you think it was your resection that helped the most or the meds
Not sure if you are asking me, but my answer would be "neither". Wht hasreally helped me is managing Crohn's through sport, vitamin and other supplements and stress relief. Meds helped too, but I was off meds for two years and for a long time did not see any difference.

The recestion was necessary because of two strictures which might have caused blockages and emergency surgery.
 
I am in the same boat here, failed asacol HD, pentasa, went to entocort and that has kept things under control but not full remission and now my doc prescribed me 6-mp and I am afraid to take it. The first day I got it I literally stared at the bottle for 20 minutes had the pills in my hand and couldn't force myself to do it. I don't trust prescription meds and don't wanna take them unless I have to, and then I wanna know exactly how and why they work. After reading more and more about it, I have decided to try and taper myself off of all drugs besides my acid reflux meds. I am on a completely liquid diet (I make smoothies with fruits, veggies, raw vegetable protein, omega fatty acids, ginger,etc) taking high doses of probiotics 3-4 times a day, and doing yoga/transcendental meditation. I am starting to feel full remission coming on and today was my 1st day on 6 mg of entocort instead of 9.
 
my doctor strongly recommended the 6-mp and said he would take it if he were me...but hes not and I'm not so we'll see how it goes, good luck daunting hope u find something that works for you!
 
Location
CA
i was on imuran a short time seems i was allergic to it . made me so sick had to be hospitalized. nausea , vomiting , couldn't eat or drink anything . took them 2 days to figure it out. i am now on a drug called 6 tg (thioguanine ) it worked somewhat for a month or so then fizzled out. remicade is recommended now and im just done with meds!! they said the next step after that is j pouch surgery ..so i made an appointment with a surgeon to get some info on the j pouch. i too am freaked out about the side effects of the meds . i want my life back .. not just to feel better , first thing i read about remicade was it was recommended to stay out of crowds and away from people that were sick or had been sick. how am i supposed to do that ? any im rambling now , hang in there .. keep us posted ...
 
HotRodCA--yea I read about the 6-mp they were going to give me and it said avoid sunlight, avoid sharp objects, avoid contact sports....I work in a restaurant (sharp objects), I rock climb (sunlight, contact sport), and like to workout/play basketball and football(contact sports), and I work on cars for fun/money (sharp objects, contact, sunlight) and I cant live in a bubble. I can't spend the rest of my life keeping a watchful eye for sharp objects and avoiding sunlight like a vampire and I absolutely don't trust big pharma or its pushers....
 
I take 6mp and I go out in the sun as much as I want. If it's a day with intense sunlight, I use sunscreen. I have also never had to worry about sharp objects or limiting my activities. I think it all depends on the person and how the medicine affects the individual. For me, 6mp and Lialda are great but other people can have side effects and might need to try something else.
 
It is great to hear that AZA can help so many, but reading online about the side effects it is so scary. I keep thinking about the what ifs and what ofs.

Unfortunately when the time comes, I will have no choice but to take it because I want to try to have a good quality of life with this medication.

I was trying to find something online today but could not. Can the cancer from taking Imuran be found ahead of time while on it so you can stop the meds before it relatively hurts you or does it come on so fast that there is no premature indication of it.
 
Hi, Ive been on aza since January and never really had any problems with it. It has kinda been more of a keep me going drug than an actual treatment for my Crohns as they put me on it at the same time was on steroids. For about 2 weeks I got mild headaches, but they went away and were really not bad at all. Its a good drug, I havnt had any bad experiences with it, I hope it works for you :)
 
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