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Experience with 6-MP (6-mercaptopurine) ?

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Ulcerative Colitis
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Posted 6/28/2013 5:29 AM (GMT 0)
Hey Everyone,   I was wondering if I could get some responses on people's thoughts and experiences with taking 6-MP. My main concern is the potential increase in lymphoma cancer risk and infections, but hopefully monitoring the blood work regularly can reduce/minimize this risk.   Doc recommends 15 mg a day. Thanks in advance. David
Posted 6/28/2013 6:19 AM (GMT 0)
I think u mean 50 mg a day. 15 mg might work for a kitten. The pills come in 50 mg tablets and some people take a few times this amount but you typically start at 50 mg.

I took it for about a year. Main side effect was some liver damage but that went away when i got off of it. Thats the main reason your doctor monitors your blood work.

I was on 50 mg and dropped to 25 mg to see if that worked and it didnt. Fyi, i was 84 lbs when i was on it so you might need a higher dose eventually.
Posted 6/28/2013 6:39 AM (GMT 0)
I was on 125mg, which was then lowered to 100 mg. I was on 6mp for 6 months. I had a skin reaction which was not conclusively linked to 6mp but I stopped it anyway. The drug did help me maintain a symptom free state, some would call it remission. It's been 10 weeks since I stopped and am still in a good space.

You're right to have Concerns but on the balance of things id say try it and see how you go. You can always stop it if you don't do well on it.

I'd recommend diet mod as well as meds to give you the best chance.
Posted 6/28/2013 12:24 PM (GMT 0)
I've been on 6mp since January of this year and it has pulled me out of a very nasty uc flare. I have not had any side effects from 6mp whatsoever. I survived cold and flu season at work without getting sick despite the fact that people around me were coughing and wheezing in the office.

As far as the lymphoma risks with 6mp, you are worrying about something that is statistically unlikely to occur. "The risk of developing lymphoma or non-Hodgkin lymphoma, which really is the main cancer that we worry about with these medications, is only about 4 people out of 10,000 people who take it. To keep that in perspective, on no medications, just a random person walking around the street in the United States has approximately a risk of 2 people out of 10,000." So, you are looking at a 0.04% chance of getting it on these meds versus a 0.02% chance if you are medication free; not exactly something to loose a lot of sleep over. "The chance of dying over your lifetime from a biking accident is 1 per 5,000; drowning, 1 per 1,000. And believe it or not, in the US, the chance of dying in a car accident is about 1 out of 260. The chance of dying from cancer is 1 out of 8, and the chance of dying for heart disease is 1 out of 5. Now, remember this isn’t patients with Crohn’s disease. This is people in general."

Below is the document I took this from. It also discusses your odds of getting sick, infected and so forth while on 6mp. "Balancing the Risks and Benefits of Treatment For Inflammatory Bowel Diseases " from the Crohn's & Colitis Foundation of America
http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf
Posted 6/28/2013 12:33 PM (GMT 0)
Like IPoop stated, the lymphoma risk is extremely low. And most of the literature you read are more or less aimed for the people that take it much higher levels as seen with transplant patients.

I was on it for about 4-5 years. I couldn't metabolize it correctly. I was always on the low end of the therapeutic range and I couldn't increase my dose because the higher levels caused me to develop liver toxicity. However, it did keep me out of severe flares, though I would still flare.

As for infection risks. Your chances of getting sick increases slightly but with the proper precautions, you should be fine. I actually got sick less when I was on it.
Posted 6/29/2013 12:42 AM (GMT 0)
My doctor said i was the only patient that this happened to, but on my 2nd day on 6 MP i turned yellow... he said it was jaundice
Posted 6/29/2013 1:03 AM (GMT 0)
I was on it for a few months but needed to come off of it after blood work showed that it was affecting my liver.

Can't say whether it really did anything since I was already in a somewhat decent state at the time and not flaring. We were mainly trying it to see if it would get me into full remission which it did not.
Posted 6/29/2013 1:54 AM (GMT 0)
I got terrible mouth sores when my dr upped my dose from 2 pills to 3 pills.
Posted 6/29/2013 4:34 AM (GMT 0)
I am on 25mg and my UC has been very cwell ontrolled. I am the only person I've heard of on under 50mg having great results but, like Red, I didn't metabolize it correctly and I had to fight through a ton of appointments with a hematologist to get into remission, luckily in my case eventually it paid off. I don't worry too much about the increased risk of lymphoma because it's pretty small. I trust my GI and she said this med has a long history and often a good outcome. She's very interested in natural treatments, I know if she thought there was something else out there that was natural, and would have helped me, she would have offered it.
Posted 6/29/2013 2:38 PM (GMT 0)
Hey Everyone,

Thanks for the responses, I really appreciate it. I think I'm going to try it along with a diet revamp. As mentioned any major changes can be stopped by removing the meds. I'm really glad to hear that people havent had too much trouble with the increased infection risk. Taking the right steps for prevention probably has a lot to do with it.

Good luck everyone!

David

Posted 6/30/2013 3:37 AM (GMT 0)
I was very nervous about starting 6mp and in fact put in off for months until I was desperate for relief from a nasty flare.
I started with 50 mg, then went up to 75. My blood work showed elevated liver enzyme so I went back down to 50 mg. My blood work has since been fine. I'm feeling great on 50 mg- no UC symptoms at all.

I was a bit nauseous the first couple weeks on it, and my hair seemed to be falling out more than usual. I read somewhere that folic acid could help the hair loss so I started taking a supplement and I feel like it helped.

All in all, it's been a positive experience. I try not to worry too much about the cancer risk- it is scary to me, even though it's a low risk, but it wasn't like I had much quality of life whilst flaring.
Posted 10/4/2019 3:43 AM (GMT 0)
Thank you, I too worry about all the side effects and my Dr recently put me on MP-6 with my Remicade due to continued flares and I just can't stand doing the prednisone unless I think I am going to die. It makes me feel horrible and effects me terribly( memory , sleep, sweating, emotionally unstable and other things Im sure) but I think I will try the MP-6 after reading these posts. I got lab work the other day and the Remicade was not even detectable in my blood two weeks after infusion. I am going up and going every 6 wks instead of 8, I pray this works. I feel like I live in the bathroom and should own stock in Depends(or other brand undergarments) Humira worked great for me, and put me in remission but six months later I became immune. I was allergic to Stellera, and Cimzia had no effect on me. I just want to be well. Diet modification really has no effect and I usually try not to eat much at all and when I do I stick to the same few things, Ive always been little my whole life but after bowel resection and many doses of steroids, I am now over weight and it is miserable. I can't exercise due to many surgeries and swimming is the only exercise I can really do but it is hard to find and get to an indoor pool. WOW I am ranting and whining and complaining, sorry, guess I just needed to vent. Thank you for all the support that everyone gives here. I love this site and i am so glad I found it yrs ago, I think I need to be on more often if just for mental health reasons. Thank you again everyone!!!
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