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input from those on 6MP

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Ulcerative Colitis
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Posted 11/2/2008 5:31 AM (GMT 0)
Just some background...I had a sever flare the beginning of this year and ended up on Remicade which put me into remission. At the end of August I started flaring again (not bad though) so my remi was bumped up 2 weeks but noticed no improvement. I started back on pred and it's been slow going. My GI is concerned that Remicade isn't working anymore and mentioned Humira which my insurance will not cover. He also mentioned 6MP for maintenance. What kind of side effects/reactions have those of you on this med noticed? This drug scares me a little I guess. Any input would be appreciated.

V

Posted 11/2/2008 2:45 PM (GMT 0)
My daughter has been on 6 mp for over a year for crohn's. Initially she was really ill but I can't blame it on the 6 mp as she was in a horrible flare and taking many other meds. It took a good 3 months for them to get the dosage right and to read on her labs. She is still on 6 mp now as maintenance after having an ileocolectomy/resection on 10/17. So far she is feeling pretty good. She has to take it with food or it makes her sick as does most meds. The warnings will scare the crap out of ya but I try to remember that they are worst case. Sorry that I can't be of more help. I hope you find something that will work for you. It is especially frustrating when meds make you just as sick as your sickness and sometimes worse. Much love & laughter to you!
Posted 11/2/2008 3:23 PM (GMT 0)
I did very well on 6mp and had no side effects at all and it put me into remission. Just like taking a sugar pill.  All my blood levels were good as well.  The only downside to 6mp is it can take 2 months to start working. 

I'd be less scared of 6mp than remicade.  Go for it!

Vin

Posted 11/2/2008 4:00 PM (GMT 0)
I'm on Azathioprine,which is essentially the same thing,it's converted to 6mp by the liver.I get tired more easily and catch a few more colds,but that's it.Drug manufacturers are obligated to list all known side effects,no matter how minimal the chance's are of getting them.I know I could get run over crossing the road,but it doesn't stop me!
What surprises me,is that you've been on Remicade before trying 6mp/Azathioprine.Our maintenance drugs are like stepping stones and generally go:
5-ASA>6mp/Azathioprine>Remicade/Humira,with Prednisone used as sparingly as possible as a "surgical strike" for obstinate flares.
Posted 11/3/2008 9:07 PM (GMT 0)
I've been on 6mp about 5 months.  Be sure to get regular bloodwork if you start taking it.  When I was at 100mg 6mp my liver enzymes went above normal but they dropped back down when I decreased my 6mp dosage back to 75mg.  I don't have much appetite, which I think is due to the 6mp but its hard to be sure.  I'm also more tired, have drier more wrinkly skin (noticeable loss of skin elasticity), thinning hair and low body temperature, but any of those symptoms could be due to my UC itself, lingering effects of the prednisone (which I got off a month ago), lack of some nutrient since my digestion isn't so good, or some non-UC condition.  I don't think all of my complaints are a direct result of the 6mp.

Posted 11/3/2008 9:21 PM (GMT 0)
Im on Imuran (Azathioprine generic actually) and I can report no side effects at all.  My blood tests are all normal and scopes are better than ever.  My gastro seemed to think that more people than not will respond without too many negative side effects.  He told me not to expect them..and I have had perfect luck. 
Posted 11/3/2008 9:31 PM (GMT 0)
Thanks so much to all of you. This eases a lot of my concerns about 6MP. :-)
Posted 11/7/2008 10:32 PM (GMT 0)

I am going on 6MP again... I was on it earlier this year for two months and I believe that is what help me reach remission - unfortunately the doctor got nervous about me being on it and took me off. Guess what? I began flaring again.

New doctor- a specialist in IBD's and is putting me back on. I am excited. Maybe this will help....

I also did not have any side effects other than being tired which is normal for UC sufferers anyway.

Good luck

Posted 11/7/2008 11:09 PM (GMT 0)
I tried it for three months back in the beginning when I was really ill. I couldn't tell that it helped me at all. Side effects for me were substantial hair loss and odd horizontal creases in my nails. Hair loss was so bad I developed a bald spot on the crown of my head and I have naturally very thick hair, so that's saying something. I never felt well while I was on it and asked to be taken off.
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