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Azathioprine or Surgery

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Ulcerative Colitis
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Posted 11/9/2009 11:52 PM (GMT 0)
Hello Everyone

I have a decision to make. I have pretty much gone through every drug except Azathioprine and nothing has worked. My doc is suggesting that I give azathioprine a try before surgery.  My question is has anybody gone through the gamit of medicine and then try azathiprine and have success.  I am really thinking about just getting the surgery, Jpouch. I am not sure that I want to wait a couple months longer to see if it even works. 

Thanks

Steve

Posted 11/10/2009 12:16 AM (GMT 0)
i started out on azathroprine, and used it for a few years, not in complete remission at anytime. But i had bad side effects, constant headaches and nausea. I took phenogren everyday, i was up to 100mg a day when i got off hte azathroprine. I went to 6mp later, which didnt work anybetter but wasnt quite as bad with the side effects.
Anyway, it takes a while for aza to get into yoru system and start working, and up to 6 months to get out of your system. Also, if you are considering children, it can pass through the sperm.
Anyway, im a pro surgery person, having done it myself.

But good luck with whatever you decide!
Posted 11/10/2009 1:23 AM (GMT 0)
I vote Azathioprine. Why not? You've tried everything else, might as well try this. Plus I'm doing great on this. Why'd they try Remicade before azathioprine?
Posted 11/10/2009 5:08 AM (GMT 0)

I dragged my feet on trying Azathioprine for months because of all the side effects and fear of problems in my liver and pancreas.  But after a week of a terrible flare, I started it about 3 weeks ago and so far none of my fears came true.  The side effects from prednisone are way worse for me and I feel better than I have for... years.  Seriously. 

I think you should give it a try, too. 

Posted 11/10/2009 7:48 AM (GMT 0)
I am with the "try it" group. I have been taking Azathiorpine in various doses for over 3 years now. I have not had trouble with side-effects and seem to tolerate it well. of course, that is personal and you may be different. But it does seem to be a pretty effective drug for some UC patients and seems worth a shot. If it does not work, there is always the surgical option. And you never know...if the drug buys you another year or two, there might be a new and less invasive surgical or drug option available.

All that said, it has to be your choice and either option seems reasonable. Just be sure to have good communication with your doctors. Good luck in either case!
Posted 11/10/2009 1:54 PM (GMT 0)
The 6mp works for many, us included, but takes up to 3 months to kick in. If you are bleeding, you don't have that kind of time. Remicade or Humira could save your colon. I am not a rush to surgery fan, the permanency issue scares me. They are making advances in treatments. You may wish to go to a Center of Excellence for other options--seems there is more to try for you.
Posted 11/10/2009 1:55 PM (GMT 0)
ooops, sorry, I just saw that you tried Remicade already. Sorry, I so hoped it was going to work for you.
Posted 11/10/2009 2:01 PM (GMT 0)
Tough call. I went the 6mp route before choosing surgery. I never suffered any short or long term side effects but the drug didn't work either. I would say if you are prednisone dependent surgery might be your best option at this point.

Sue
Posted 11/10/2009 2:05 PM (GMT 0)
     6MP isn't working for me.  I went on it seven years ago.  I had a two year remission initially, but then I started to flare more frequently.  Going to try Remicade now.  I was thinking surgery too.  My main problem is the rectum.  Feels like it is completely blocked.  Must be terrible inflammation and I was scheduled for a colonoscopy next Tuesday.  No way is anyone going to try to get up there now.
Posted 11/10/2009 3:58 PM (GMT 0)
I would try 6mp first i have been on it now for almost 3 months and it seems to be working am down to 10mg of pred now so something is doing good surgery for me would be the very last option.
Posted 11/11/2009 3:42 AM (GMT 0)
I would say stay on the pred until the aza starts to kick in, for me it only took a few weeks it seems but everyone else is saying three months, maybe it depends. At that point if the aza is not working, surgery.
Posted 11/11/2009 5:24 AM (GMT 0)
The longest remission that I've had in 11 years of UC was on just Immuron and Asacol. At least 2 + years of complete normalacy.

I'd try it first.

The J-pouch option will always be there.

kind regards,
Iflyfish
Posted 11/11/2009 5:26 AM (GMT 0)
I've experienced no adverse side effects from Immuron ~ it does generally take a couple months to kick-in.

You're doc will monitor blood work, liver enzymes, etc.
Posted 11/11/2009 6:32 AM (GMT 0)
I am sorry you're facing such a tough decision. I don't know what I would do if I were in your shoes. I think surgery is probably a good option if you're not ready to wait another 3 months to find out whether treatment will work. 3 months is a long time when you feel terrible. Surgery would put an end to all of these issues but it's a long recovery from the surgery. I wish I could offer better advice. It is such a personal decision. You have tried so much, I would be surprised if you had a miraculous recovery from Immuran but I guess we don't know unless we try. Have you looked into clinical trials? Maybe there is a new bioligic that is being tested for UC? I know you haven't had the best luck with them but it could be worth a try. I hope you get some relief soon.
Posted 11/11/2009 3:39 PM (GMT 0)
My personal opinion is that if Humira and Remicade didn't work, I'd just go for the surgery, why would a pill attempt to work if the big drugs don't? ;) I've taken Imuran with Humira until I was stable on just taking Humira. Taking both drugs helped me get remission. I just think it'd be torture to you if you attempt another drug if you already have a HUGE list of tried and not working drugs.
Posted 11/11/2009 6:03 PM (GMT 0)
ive been on azathioprine for 6 years now and my blood work has always been good, in that 6 years ive had 3 small flares that got better with a little kick of pred, now im in a flare again and it looks like the pred is starting to work finally, so was the azathioprine doing anything????? i dont think so, i was healthy for 3 years straight before i went on it (cause of a bad flare) and during those 3 years i wasnt on any meds sooooooo??? pred is the only drug that i think works FOR ME! good luck
Posted 11/11/2009 6:08 PM (GMT 0)
I guess you need to decide if you want to give it up to three months to start working. If you just want to feel better and be done with UC ASAP, then surgery would be the best bet. If I were in your shoes, I'd probably be leaning towards surgery.
Posted 11/11/2009 6:48 PM (GMT 0)
You may want to venture into the fecal transplant thread if you are considering surgery.
Posted 11/12/2009 12:11 AM (GMT 0)
Thanks everybody for their replies.  I am still not sure which direction I will take.  Good points have been made on each side.   One question that was not answered was has anybody taken Azathioprine after taking all other medicines and have complete success. Success to me is normal (for me one bowel movement a day, with no urgency) not just a little better.   I realize jpouch will still be 6 or so bowel movements day, but for me the worst thing about this disease is the urgency and being pinned to your home.  I believe with a jouch you do not have the urgency. I stand corrected if there are any jpouchers out there.  Anyway I am still in limbo. Feel free to coment further.

One other thing that is kind of bothering me is the threat of lymphoma.  Even though its a very low risk its still a risk that I could avoid. See recent study below

http://www.ccfa.org/reuters/lymphomas

Thanks

Steve

Posted 11/12/2009 12:16 AM (GMT 0)
Isn't the risk of getting lymphoma also raised by taking Remicade and Humira? And even though it is by the immune modulators, the risk is still really, really, really low.

As far as I know, jpouchers who don't have complications with their pouches don't have urgency issues. I know for a fact that suebear doesn't. I think she's said that she empties her pouch just about every time she urinates, but that it's so quick, she just doesn't think about it, nor about how many times a day she does it. She also has said that if necessary, she can hold it.
Posted 11/12/2009 12:41 AM (GMT 0)
Yes Fruit girl but have you seen a men's restroom. Not as sanitary.
Posted 11/12/2009 1:12 AM (GMT 0)
Oh, girl's bathrooms can get real bad lol.

As for the lymphoma, I believe that risk is generaly associated with people who are taking Imuran as an anti-rejection drug after transplants, and they are on much higher dosages.

As for trying all the other medicines first, I think most people try Imuran before Remicade or Humira so that's why no one has said anything. Good luck! =)
Posted 11/12/2009 1:20 AM (GMT 0)
      I was on 6MP for seven years.  For the first two years I enjoyed remission.  Then started flaring every year.  Now, I have had three flares (bad ones) in the past eighteen months.  Been on prednisone far too often.  Doc took me off the 6MP...just not doing the trick.  Waiting for insurance ok for Remicade.  By the way, what was your reaction to Remicade?  Was it a bad reaction...or no reaction at all?  I see your problem is the rectum...so is mine.
Posted 11/12/2009 1:25 AM (GMT 0)
Christine1946

I had no reactions to Remicade. I am still taking the infusions and actually looked forward to it just for the opportunity to take a nap during the work week lol.
Posted 11/12/2009 2:26 AM (GMT 0)
See if your Doctor will let you try some MS Contin for 3months.Would you like to take 2-3 stool softners a month, bet you wasn't expecting that from someone that has had U/C for 10 yrs.This is not BS Im living proof.I eat anything I want I do not eat at Micky D's thats just a pref.I take MS Contin for back pain but serious I have not had any U/C problems in over 3 yrs I do get blood work for myself just to monitor liver and kidney,But gladly make the trade off for all the bathroom trips, cramping,bleeding and hospital stays.Remember these Doctors are only practicing medicine and most likely none of them are dealing with U/C on a personal basis.
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