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Imuran not effective

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Ulcerative Colitis
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Posted 2/8/2011 8:52 PM (GMT 0)

Hi, I'm looking for feedback from anyone with uc that has been told Imuran is not effective for them. It seems my body is metabolizing it too fast and I can't go to any higher of a dose without having liver issues. Now they are talking Remicade or surgery. Just curious what choices others have made and if you are happy with those decisions. Anything else I should be considering before I have my next doctor meeting? I'm trying to stay calm but my stress and sadness is mounting.

Posted 2/8/2011 9:03 PM (GMT 0)
After I couldn't use Imuran or 6MP anymore (not due to metabolism issues), I had surgery. My doctor said that he didn't blame me for not wanting to try Remicade, that the success rate for those with UC wasn't that high. I thought I was going down the path to surgery anyway so I felt I should do it when I was somewhat healthy and in control of the situation instead of having to have emergency surgery and not having the best choice of surgeons. Also I wanted the j-pouch surgery and the younger you have that surgery the better.

So sorry you are having to make some tough choices.
Posted 2/11/2011 3:01 PM (GMT 0)
Thank you Disneynut66 for your response. I'm started to wrap by head around surgery because I just don't think Remicade is right for me. I feel like you did- that I'm on the path to surgery anyway at this point in my disease. I really would hate to have the surgery as an emergency.

Just curious how your feeling from your first part surgery? How long until you were feeling strong enough to get around and such? Did you have laposcopic surgery?

Thanks again.

Posted 2/11/2011 3:19 PM (GMT 0)
I was on 6mp, the cousin of Imuran, and it did not improve my UC or allow me to get off prednisone. That was the last drug of choice in 2000. So I opted for jpouch surgery. I'm very happy to be rid of UC and living with a jpouch these past 10 years has been great. As you know, you still can try Remicade or Humira.

Sue
Posted 2/11/2011 3:30 PM (GMT 0)
Honestly i just got out of the hospital a few days ago after a ten day stay because of my UC, i was on IV steroids and had been on prednisone at 40 mg for a few weeks and was seeing no improvements. The doctor couldnt use Imuran because he told me it would take about 2 and a half months for it to take hold and work in my system so basically my choice was remicade or surgery. He doesnt believe in doing the surgery until everything else is tried, and even though i had a great many doubts and worries i went ahead with the remicade. I know there are some issues with it but honestly, i had my first dose on tuesday, and already i feel great. I was skeptical and worried but i highly suggest giving it a shot, i havnt felt this good in months and its only three days after my first infusion, surgery is always an option at a later date but once its done, it cant be undone.
Posted 2/11/2011 5:09 PM (GMT 0)
CWell, it is five weeks post op and I am feeling really good. This is the first week I have felt so good, but not because of complications. I have trouble getting comfortable at night and my appliance had given me much grief. That being said, I have now changed it 3 times by myself without leaking, yea for me. No pain or problems with the pouch.

I am so blessed because I was able to quit my job so I had the time to get better and have both surgeries. That being said, I am not used to having nothing to do so I have become a bit lazy and usually take naps every day. At first I needed to due to the surgery, now I am just so used to it.

I did just get back from meeting my old special needs class at McDonalds and that went great. It felt so good. Made me decide to start subbing in a few weeks!

Also, it is not up to your GI to decide whether or not you should have surgery...it is your decision. I researched a lot to find the best surgeon in the area and called and made an appointment. My GI wanted me to try Remicade, too, but I said enough is enough. It's expensive, has side effects, has a fairly low success rate and even if it did work initially, I knew eventually I would have to have surgery. I wanted to get it on my terms while fairly healthy. Truly, at this point I wouldn't want to go back.
Posted 2/11/2011 7:15 PM (GMT 0)
Have you considered adding allopurinol? I had the same issue with my liver and since adding allopurinol, I have been able to metabolize the 6mp without any ill effects to my liver. Disscuss this option with your GI.
Posted 2/11/2011 7:22 PM (GMT 0)

chris_123 said...
Honestly i just got out of the hospital a few days ago after a ten day stay because of my UC, i was on IV steroids and had been on prednisone at 40 mg for a few weeks and was seeing no improvements. The doctor couldnt use Imuran because he told me it would take about 2 and a half months for it to take hold and work in my system so basically my choice was remicade or surgery. He doesnt believe in doing the surgery until everything else is tried, and even though i had a great many doubts and worries i went ahead with the remicade. I know there are some issues with it but honestly, i had my first dose on tuesday, and already i feel great. I was skeptical and worried but i highly suggest giving it a shot, i havnt felt this good in months and its only three days after my first infusion, surgery is always an option at a later date but once its done, it cant be undone.

Remi or surgery ?

Why is he telling you that ? I have been hospitalized and released and never told to schedule surgery ? I assume since you were discharged you improved right ?

Please elaborate.
Posted 2/11/2011 7:26 PM (GMT 0)
I agree with aguywithuc. I opted for 6mp even though I was pretty ill at the time. I preferred to wait and see if I had good results from it. I am not going to jump and have surgery because I can't wait a few months for a drug to show effects. Some people have positive benefits from Imuran/6mp in a couple weeks. It doesn't take months for everyone. It took me the maximum amount of time possible because I had to add allopurinol to get my levels into the theraputic zone and that was after 3 months without it, not seeing much benefit from the drug and I survived.

Don't let doctors pressure you.
Posted 2/11/2011 9:41 PM (GMT 0)
Imuran didnt work for me and then i went to Remicade. So far its working, not 100% but 85%. Im just happy to be almost off prednisone again and not flaring.
Posted 2/11/2011 10:09 PM (GMT 0)
Cwell. Imuran (Azathioprine in the UK) is not working for me. It's allowed me to taper fairly happily to about 10mg of Pred, but once I go lower it's a big flare up all over again. I've recently seen my consultant and before opting for surgery she told me we can try two other immuno-suppressants and if they fail or don't agree, then remicade. The other immuno-suppressants are Methotrexate and Tacrolimus, both deadly no doubt but I'm happy to have given it all ago before I go for surgery.
Posted 2/11/2011 10:47 PM (GMT 0)
Jules: See my post above about allopurinol.
Posted 2/12/2011 7:07 AM (GMT 0)
I was only released from the hospital after id been given the first dose of remicade and began to improve, he said that if i wanted to take longer and keep trying prednisone i could that it was my decision, but id already been on it so long he didnt believe it would help me at all. So far im quite glad with my decision for remicade, i dont feel 100% and im having a bit of a bad night, but the past couple of days ive felt better then i have in a long time.
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