Share Facebook
Crohn's Disease Forum » Treatment » Imuran/Azathioprine/6-MP » AZA/6MP How scary is it


09-15-2013, 06:26 PM   #1
Daunting
Senior Member
 
Join Date: May 2011
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.
__________________
Finally been told I have Crohns


B12 injections started on 14/03/2013
Astmatic (ventolin when needed)
Paxil 15mg started again 18/09/2013
Synthroid .075mg
Lomotil as needed
Xanax to sleep when needed
Doctor switched me from Salofalk to Mezavant
Not sure why
09-15-2013, 06:35 PM   #2
Patricia56
Senior Member
 
Patricia56's Avatar
 
Join Date: Jul 2012
Location: Northern California, USA
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
__________________
Badger, 18, CD, overall great guy
Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
09-15-2013, 06:53 PM   #3
pammy
 
Join Date: Sep 2013
Location: st. louis, Missouri
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?
09-15-2013, 07:25 PM   #4
Daunting
Senior Member
 
Join Date: May 2011
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.
09-15-2013, 07:52 PM   #5
pammy
 
Join Date: Sep 2013
Location: st. louis, Missouri
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.
09-15-2013, 07:56 PM   #6
hawkeye
Forum Monitor
 
Join Date: Mar 2011
Location: New Brunswick

My Support Groups:
Been on Imuran since 1990 with no issues. I'd recommend it
__________________

Diagnosed since 1990
Current Medications: None currently. Was on Imuran (150mg/day) and 5-ASA (3000 mg/day) as maintenance meds prior to surgery
Surgeries: Left hemicolectomy 2014.
09-15-2013, 09:29 PM   #7
kh216
Forum Monitor
 
Join Date: Jul 2012
Location: Barrington, New Jersey

My Support Groups:
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.
__________________
6mp
Lialda
Vitamin D and B 12
Calcium
09-16-2013, 01:18 AM   #8
alex_chris
Senior Member
 
alex_chris's Avatar
 
Join Date: Apr 2013
Location: Frankfurt, Germany
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.
__________________
-----
Crohn's diagnosed in 1999
On Aza from 2003 to 2008 and from 2010 again until Today
60cm of smaller intestine removed in 2003
Vitamin therapy with D3, B6, B12, magnesium, zinc, folic acid for years
Iron therapy with Tardyferron 80mgx2 and Loesferron 80mg for years
Yoga, running, freeletics on the sport side!
09-16-2013, 06:25 AM   #9
kh216
Forum Monitor
 
Join Date: Jul 2012
Location: Barrington, New Jersey

My Support Groups:
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.
09-16-2013, 07:12 AM   #10
Daunting
Senior Member
 
Join Date: May 2011
hi,

do you think it was your resection that helped the most or the meds
09-16-2013, 07:18 AM   #11
Johnnysmom
Forum Monitor
 
Johnnysmom's Avatar
 
Join Date: Oct 2011
Location: Cincinnati, Ohio

My Support Groups:
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.
__________________
Mom of Johnny
Dx Oct 11 2011 Crohns disease
Prednisone done 12/30/11
6mp 50mg every day
Allopurinol 50mg -discontinued per new G.I. on 11/01/12
Multi Vitamin
Vitamin D3 1000mg
Prayer
09-16-2013, 03:22 PM   #12
Daunting
Senior Member
 
Join Date: May 2011
WOw a year or two to develop, I thought they said long term side effects. I was thinking they were meaning 5 or so.
09-17-2013, 01:50 AM   #13
alex_chris
Senior Member
 
alex_chris's Avatar
 
Join Date: Apr 2013
Location: Frankfurt, Germany
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.
09-17-2013, 11:57 AM   #14
ce1210
Senior Member
 
ce1210's Avatar
 
Join Date: Jul 2013
Location: Chattanooga, Tennessee

My Support Groups:
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.
09-17-2013, 12:00 PM   #15
ce1210
Senior Member
 
ce1210's Avatar
 
Join Date: Jul 2013
Location: Chattanooga, Tennessee

My Support Groups:
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!
09-17-2013, 02:25 PM   #16
HotRodCA
 
Join Date: Sep 2013
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 ...
__________________
DX 1997
current meds: asacol , thioguanine 6TG , 20mg prednisone , vicodone

past meds: canasa , mesalamine inama's , imuran ,
sulfasalazine

supplements: weekly iron injections , folic acid , multi vitamin
09-17-2013, 03:04 PM   #17
ce1210
Senior Member
 
ce1210's Avatar
 
Join Date: Jul 2013
Location: Chattanooga, Tennessee

My Support Groups:
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....
10-06-2013, 05:10 PM   #18
kh216
Forum Monitor
 
Join Date: Jul 2012
Location: Barrington, New Jersey

My Support Groups:
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.
10-17-2013, 03:43 PM   #19
Daunting
Senior Member
 
Join Date: May 2011
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.
10-17-2013, 04:46 PM   #20
Ki3
Senior Member
 
Ki3's Avatar
 
Join Date: Apr 2013
Location: Crawley, United Kingdom

My Support Groups:
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
Reply

Crohn's Disease Forum » Treatment » Imuran/Azathioprine/6-MP » AZA/6MP How scary is it
Thread Tools


All times are GMT -5. The time now is 02:07 AM.
Copyright 2006-2017 Crohnsforum.com