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patients with a good response to Imuran or 6mp

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Ulcerative Colitis
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Posted 10/10/2007 9:46 PM (GMT 0)
Hi everyone,

I was considering trying 6mp to see how I do on it.  I have heard such horror stories about these two immunosuppressant drugs--from hair loss, skin rashes, pancreatitis, liver enzyme elevations, etc.  I just wanted to hear some positive stories.  My GI was giving me his opinion.  He said that most of the people who post experiences about the drug probably did not do well on it; however, their are several who do great on it.  I want to see if this is true.  Also, if you respond to this thread, could you please tell me if your stools are completely normal and if a colonoscopy showed no inflammation in the colon after being on one of these drugs for a while. Also,  if it is working on your colitis which side effects are you living with as trade off for a healthy colon. Hope to hear from some of you soon.  I love this forum--so kind and supportive.

Regards,

Red plum

Posted 10/10/2007 9:56 PM (GMT 0)
Hey! I have been on Imuran since April of last year. I was steroid dependent on Pred. and really saw this as my only option. It took awhile to kick in for me (about 4 months or so). Side effect wise....I had some nausea when I first started taking it. I would suggest taking it in the evenings or before bed. That eliminated the nausea for me. I have an increased # of warts on my face. I can't remember the techincal reason but I think my body can't fight off the virus that causes them. I also tend to get sick a lot more....I also have a 2 year old so I can blame him too. Ha ha! I think that about covers it for me.

My stools have never been what they were pre-UC. I do not have any blood, mucous or extreme urgency. I typically go 1-3 times a day. I have IBS in addition to UC so I do occasionally have diarhea.
Posted 10/10/2007 10:09 PM (GMT 0)

Hey Tab -

I am a big fan of Imuran. It gave me my life back. It took about 6 months to really start to work but for the first time in about two years I feel "normal". My stools are back to what they were pre-UC and the urgency has for the most part gone away. I think any urgency I have I bring on myself from getting stressed/nervous when I go out. It has gotten much better but after two years of constantly looking for public washrooms and having "accidents" it takes a while to get that confidence back.

As for side effects, I have had none. I get blood work done once a month and so far I have been in the normal range, or very close to it, on everything they test for.

All the best,

Posted 10/11/2007 12:56 AM (GMT 0)
I've been on 6mp because I too couldn't get off steroids but my steroids were in enema form. My GI didn't even want to start on oral because of complications and/or dependancy for which I'm very grateful! I have had great success with 6mp. I started about a year ago at 50mgs and after still having issues with bleeding and minor D, my doc did the Prometheus test and found that I was at the low end of metabolizing it so he increase my dosage 75mgs on Mon and Thurs with the rest of days still at 50mgs. This has helped me tremedously because now I have no bleeding (which can also be from the Canasa I take on occasion) but I also have no D, urgency and best of no pain. I doubt my stool will ever be normal because I think that Colazal makes it like that but I'm happy where I'm at because I know that I will never get to before Uc days. In the beginning my side effects were slight nausea, headaches, minor hair loss and fatigue but after my body got used to it, all that ceased. I do however get random rashes, but they don't hurt or itch - sort of burn though and they only last a day or so. And I find I do heal a little slower from injuries then before. I think overall that this has been a miracle drug for me because I have my life back after a year long flare. I can handle the side effects any time for that because they're not extreme and actually very far and few in between.
Posted 10/11/2007 2:42 AM (GMT 0)
good to hear about everyones response to imuran...

i just had a colonoscopy yesterday and i have severe left side colitis (descending, sigmoid, rectum) and mild colitis throughout the rest of the colon.

dr wants to start me on imuran and i am a bit freaked out as i was planning on getting pregnant in the next few months.

i dont want my baby to have birth defects or any problems. does anyone have any knowledge on the subject of imuran and pregnancy?

please help!
Posted 10/11/2007 3:34 AM (GMT 0)
ditto on getting your life back - it's been 5 months since he started the Aza - 75 mg and he was on the low end of metabolizing as well - increased to 150 very recently - with monthly blood tests. He is a totally different person. We thank God every day for giving him his life back. The past 4 days have been so totally normal it is kind of scary but it really makes us grateful as the past year and 1/2 was not so nice off and on. More off than on.
Posted 10/11/2007 2:48 PM (GMT 0)

HI,

I have been on 6-MP for almost 3 years now.  It has overall been great.  I was nervous about the side effects, but once I got on it and everything went smooth I was happy with the results.  I have had a little bit of hair loss (in the beginning), and  a touch of acne, but that is it.  It took about 3-4 months to kick in.   I had a a long 2 year remission with this medicine.  I had a baby about a year ago, stayed on this med and everything went great.  I have had trouble getting back into a nice remission like before, but I think after some time on prednisone things are good again.

I do not have blood, pain, or many urgency issues.  I have severe PanColitis and really struggled to get it in control when I found out 4 years ago.  Now I go 1-2 times a day and actually feel like a semi "normal" person.

Good luck to you!

Posted 10/12/2007 1:51 AM (GMT 0)
I've been on 6mp for about 3 years now as well and I've done really well on it. I haven't noticed any side effects at all! This past year I had a pretty big flare and had to go on Prednisone. I started Remicade and in conjunction with the 6mp I've been in remission since April and feeling GREAT! I haven't had normal stools since 1990 and for the first time in my life, I do! I go to the bathroom once a day and have even found myself constipated recently! It's crazy!!! Prior to going on the Remicade, I was diseased up to my decending colon. I had a colonoscopy in August and it came out clean!!! The combination of drugs has really made a difference in my life. I think the Remicade is really the cause but I believe that the 6mp has been wonderful for me since it helped me stay in remission for 2 years when prior to that I had a hard time getting into remission.  Good luck with whatever you try!!!
Posted 10/12/2007 1:52 AM (GMT 0)
Not sure why my signature is still showing the Prevacid or Canasa since I changed my profile. I stopped them both! LOL  Oh well!!!
Posted 10/12/2007 7:25 AM (GMT 0)
Imuran has worked really well for me. I just went off of it to try and get pregnant, and I'm a bit nervous because it worked so well. I had very few side effects really. The main one was fatigue when I would take it in the morning. WHen I started taking it at night that stopped. I actually got sick less while on it, but when I did get sick it seemed to last longer. As for my stools- totally normal now. I go once maybe twice a day. Occasionally I get blood but very little and not very often (I think it is more tied to my menstrual cycle as I notice it right before I have my period).

It is a drug that can give you your life back. I understand being nervous- I was terrified. When my doc gave them to me I waited a week to start and cried the first couple of weeks every time I took it. But after a few months I felt great!
Posted 10/19/2007 6:23 AM (GMT 0)
Hi,

Thank you all for your quick and considerate responses. I can see that the drug can work quite well for some people. It is good to hear. Hope you all keep doing well.

Regards,

Red Plum
Posted 10/19/2007 12:53 PM (GMT 0)
The one positive thing I can say about Imuran so far (azathioprine), is that I haven't had any negative side effects from it.  But it hasn't made me any better yet either (still waiting to take the Prometheus test to determine the correct dosage).
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