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Still in hospital...going to try Imuran (sp) this time around...thoughts?

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Crohn's Disease
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Posted 10/26/2011 11:35 PM (GMT 0)
So, Still in hospital (going on 3 Wks) now.  I had my first resection surgery last friday due to a small bowel blockage.  Doctor took 18" out.  I feel like a million bucks right now to be out of all that crohns pain! 

The doctor mentioned trying imuran as a maintenance drug for me.  as well as something else which now I cannot think of the name...I do know it is not Prednizone..as I pitch a fit if they even mention that drug to me! Maybe it was Pentasa.

Any of you like imuran?  Any bad experiences? No 2 patients alike I know...but I've not heard anything good or bad on this one. 

Thank you for any input on this, Kathy

Posted 10/26/2011 11:59 PM (GMT 0)
Hugs Kathy!!! Hoping your surgery leads to a long long remission for you, you deserve it after all that you have been thru. We have many folks who have found success with either Imuran or its sister med 6mp. Zanne has been on 6mp for 13 years and MikeB for over 10 years. I hope it works as well for you. Hugs!
Posted 11/8/2011 11:01 PM (GMT 0)
Thanks so much Nanners. ! I hope you are feeling better as well.  It is encouraging to hear that some have had such good results with immuran for so long,  but my regular doctor just told me that it is a form of chemo?  Is this true?  If They took out the 18" of small bowel...I could see putting me on a maintenance med for the inflammation, but isn't there others?  Over the years they have tried pred, pentasa, asachol, all super bad side effects. and I had to stop.  Is there others? Or do you feel Imuran is next step at this point?  Thanks for your input...I now am a firm believer in what you said in the beginning...maintanence meds.  i didn't have any for a long time and went in for blockage that required surgery too!  Kathy
Posted 11/9/2011 12:14 AM (GMT 0)
I tried Imuran as my first med in August (diagnosed in late June) and did not respond well at all. After 8 days I was in the ER with a fever, dry heaves, shaking, sore throat... white cell count was up to 4000 so they gave me antibiotics and sent me on my way. Three days later I was back in after passing out at home... my WBC was up to 12,000, my blood pressure was way low, had acute renal failure, turns out I had sepsis, I was in the hospital for 5 days, ICU for 2, had a blood transfusion, lots of fluid... it was somewhat scary after the fact. I was curious if the Imuran was to blame but due to whatever reason (even though I asked many times) I never got to see my GI. So I stayed on the Imuran, I was at home for 3 days, still dealing with really bad "chest" pains and my BP was still low so I went back and found out that now I had Pancreatitis and a UTI. It was obviously the Imuran... so I was in the hospital another 4 days for that. After stopping Imuran I haven't been sick since and my pancreas has been fine.

From what I understand Pancreatitis occurs in something like 3% of Crohns patients, and if it occurs it occurs within the first month. I'm sure the combination of Prednisone and Imuran caused my immune system to crash at a bad time which is why I had sepsis... I can't really say how many other people had such a reaction since I've never really been able to find out. But if you start it make sure you pay attention to anything you may be feeling and if you get sick don't just write it off.

Right now I'm on Prednisone and Pentasa. Since I'm still on Prednisone it's hard to tell how well Pentasa helps me, but I do not have any side effects from it.
Posted 11/9/2011 1:54 AM (GMT 0)
Hi Kathy-

I've been on Imuran for several years now and am feeling pretty good (thought I suppose it is a Imuran/Remicade/Cipro/Flagyl cocktail). I think that your doc labeling Imuran as a form of chemo is a little misleading. It's a heavy chronic immunosuppressant, no doubt. And it's possible your body wouldn't handle it, like Ishiman above. But many people like myself do really well on it. It has some side affects initially that usually go away with time; hair falling out/thinning, nausea, headaches. We have to remember that Imuran was, I believe, initally used in kidney transplants to prevent rejection, so it's a pretty ramped up drug. And of course, it has more serious risks, but so many of our drug options do these days. All in all, I like it. It helped pull me out of a nasty flare. Good luck!
Posted 11/9/2011 1:55 PM (GMT 0)
Kathy,
My mom has crohns and has been on imuran or 6mp for many years. She is in total remission right now and is tapering off the small amount of pred she is on with no problems so far. She has had no known side effects from the imuran and is an example of a person that imuran has worked really well for. Good luck and I hope you get to go home soon!
Posted 11/9/2011 2:40 PM (GMT 0)
LG, imuran is considered a maintenance drug, especially low-dose.
I've been using imuran for about 12 years. No problems. Blood work always looks good. I think I tried to increase to a really high dose once, but my GI pulled me off. I presently use it in combination with pentasa and prednisone, when needed.

Also, I hope you have a long long remission!
Best wishes.
Posted 11/9/2011 9:43 PM (GMT 0)
I have been on Imuran for two months now and all my blood levels are good, no real side effects other than my hair is constantly falling out and my professional hair coloring doesn't last as long now.

All in all, I was terrified tonstart but once I wrapped my head around it it hasn't been much of a struggle. I take mine at dinner time, dioesnt seem to bother me at all.

Best wishes!
Posted 11/15/2011 10:11 PM (GMT 0)
Thank you all for your experiences.  They sent me home on 6 pills of Pentasa...by day 3 I thought I was dying! Heavy D, Mucas, Blood, couldn't walk (so weak).  I stopped them.  I feel better now, but still major D and urgency issue. 

So, I cannot take Pentasa, Pred, Asacol.  He put me on 9mg Entocort again.  I am wondering if I will ever find a maintence drug that agrees with me.  He stated that he wants to do a colonoscopy in January, as my "markers" showed they did not get all the crohn's out.  So, after that he may start me on imuran.  I am so unsure of any meds..(i get all side effects) but at this point I will try anything! 

It helps to have all your input so thank you all very much!  Kathy

Posted 11/15/2011 10:14 PM (GMT 0)
Seems that a lot of folks have had great results with these drugs. I hope you will also. Be sure to keep up with your blood work though. Also be aware of gall bladder like pain that could be a reaction by your pancreas.

It is so nice to hear of someone relieved of the pain of this DD.
Posted 11/15/2011 10:29 PM (GMT 0)
I have been on 6MP (imurans sister med) for over 13 years in combination with a few other things, but it is the one thing that has really worked for me. It does take a few months to get into your system and really take effect though. It might be a good med for you, but it will take a while for it to get into your system so you will need to have something in the meantime to help you through.
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