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Scared of 6mp

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Crohn's Disease
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Posted 12/22/2015 1:29 PM (GMT 0)
Hi everyone,

I have been a lurker on this forum for several years and have learned a lot from many of your posts. I have had Crohns for about 5 years. I am now 38 years old. I've been on Pentasa (8 pills/day), with the occasional round of Flagyl and/or Entocort. This latest flare however was pretty tough for me and my GI brought up 6mp. He is supportive of me going on this. I am just waiting for the blood test results to see whether I "passed" the test that indicates that I will be able to metabolize it. The thing is is that I think I have done too much of my own research and I am now pretty freaked out about taking it. Can any of you share your own experiences? He has already called in the prescription and if I pass the test he will be starting me on 50mg and monitoring my blood work carefully in the beginning. He also mentioned the warning signs of pancreatitis with this drug and advised me to go immediately to emergency room if I feel like I have the symptoms.

Any experience would be appreciated. Thank you.
Posted 12/22/2015 2:27 PM (GMT 0)
6mp has worked out well for many people...keep in mind that it takes several months to get into your system and work effectively. I passed the tmpt test, but I still ended out with elevated liver enzymes and we had to discontinue it. I wasn't on it long enough to see if it would have worked. It did make me a little nauseous, so taking it before bed helped that.

Try not to be afraid.....for most of us, if it doesn't work or causes ill effects, you can get off the drug and the problems will be reversible.
Posted 12/22/2015 2:52 PM (GMT 0)
I didn't take a TMPT test, but had frequent blood tests for the first 3 months. I was quite nauseous for the first week or so, but it does pass for the vast majority (a few never get over the sickness); after that, I never had any more issues with feeling nausea on 6MP. Sadly it never actually worked for me, but then nothing did - not even Remicade.

Some people take a low-dose 6MP and allopurinol combination (low dose being one quarter to one third the usual dose, I think). Apparently this reduces liver-related side-effects whilst retaining the full effectiveness of the 6MP. If you do have problems with tolerating 6MP or your TMPT test results are a bit dodgy, that might be worth asking your GI about.
Posted 12/22/2015 9:21 PM (GMT 0)
I couldn't tolerate 6mp or imuran. On the other hand, my brother has been on 200mg/day of imuran for a few years and has had no side effects whatsoever. Nothing. So you just never know!

Pentasa is not worth taking; it's just about useless for Crohn's.

Imuran or 6mp is worth trying in your case.
Posted 12/23/2015 3:56 AM (GMT 0)
The first three months on 6mp were hell.
I felt nauseous everyday.
And just when I was finally getting over it, my doctor said I had to increase to a pill and a half in order to be at therapeutic levels, and the nausea all came back full force.
I kept taking it and then it made my hair fall out, which led to a prescription for folic acid.
I had to do a lot of blood work too.
They made me go off of it when I became pregnant and I have no desire to go back on 6mp any time soon!
ugh
Posted 12/23/2015 12:38 PM (GMT 0)
Wow I really appreciate the feedback from all of you. Thank you for sharing. I feed a bit less scared right now. I am prepared for the nausea and do well taking phenergen (spelling?). Also, I take a biotin supplement but am thinking about adding folate but will talk to doc first as I am concerned about hair loss. I am still waiting to get the "yes" from the doctor as to whether to go ahead and start it but I think regardless it will be after the Christmas holiday. Yeah my GI has been a Pentasa fan for me along the years but but not when he saw this last flare. I was scoped right before Thanksgiving and that's when he said we needed to discuss a stronger med.
I'lll keep you posted and I really look up to all of you for your contributions to this invaluable forum.
Posted 12/25/2015 8:44 AM (GMT 0)
I can't take it, both 6mp and Imuran are now on my allergy list. Since it gave me a bad case of pancreatitis, and an inflamed liver. Was the in the hospital quite a few days. I can't even tell you how painful that was.

I don't want to scare you though. We have to try, we are all so different, and I sure wouldn't want to pass up a drug that may actually work, based on what other people experiences. Just keep in mind that it can happen though. Look for any signs of severe upper abdominal pain and vomiting (and I mean severe, not just a little nauseated). Keep up on your blood work when the doctor orders it. If you do get those symptoms I'd get yourself to the ER quick. May never happen, but I was glad I knew about it ahead of time, so that I knew what was going on. Good luck to you, I hope it works wonders.
Posted 1/7/2016 12:56 AM (GMT 0)
Thanks again for sharing. I found out today that I did not "pass" the test and the GI felt based on the blood tests that I do not have the enzyme levels to properly metabolize 6mp. He's asked that I come in Friday morning to discuss other options. Not sure where that puts me as my Crohns has always been classified as "mild to moderate" and I've had 3 flares in 5 years. Not sure if anyone has experience with alternatives to 6mp. I think I will start a new thread on this.
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