Teenagers on 6MP?

[crohn'sparent]

Hello, this my first post. My son was diagnosed with Crohn's in March of 2011 at the age of 14. He has it in his ileum in the area where it connects to the colon. He was started on 4 tabs of 500mg of Pentasa twice daily. After two years, his doctor wants to place him on 6MP. He said trying to continue treating with Pentasa is like treating a fever with a cold cloth. After reading about this drug, I have some serious reservations about giving it to my son. If there are any mom's out there or any teenagers currently taking this drug, I would love to hear what your experiences are with it. Thanks!

 

[Jennifer]

Hi crohn'sparent and welcome to the forum!

I started taking 50mg of 6MP when I was 15. I took it for about 15 years and didn't have any side effects while on it. My GI bumped up my dose to 100mg last year and that's when it started doing damage to my liver so I had to stop taking it. Since I had blood work done often it was caught early and no permanent damage was done. Severity and weight both play a role in the dosage though. Have blood work done often to make sure its not affecting other parts of the body http://www.crohnsforum.com/wiki/6-thioguanine-6-TGN. I had blood work done once a month while on it. I didn't get sick more often either while I was on it even though it does suppress the immune system. For me the medication worked very well and even though I had issues with it later on with a dose too high for me I still recommend it to other people.

Pentasa, Asacol and other meds in the Mesalamine family may not work very well for patients with Crohn's disease. "Mesalamine acts topically. It's like putting lotion on your skin but you're putting it on your intestines. As Crohn's Disease can extend through every layer of the gut, it doesn't make sense that Mesalamine would work that well. Conversely, Ulcerative Colitis only affects surface mucosa so it can work well for it." http://www.crohnsforum.com/showthread.php?t=36292

There are a couple of sections on the forum I encourage you to check out such as the parents section and the subforum for 6MP:
http://www.crohnsforum.com/forumdisplay.php?f=49
http://www.crohnsforum.com/forumdisplay.php?f=64

Keep us posted on how your son is doing.

 

[Jmrogers4]

Welcome to the forum crohn'sparent, check out the parents of IBD section when you get a chance there are quite a few of us with similar aged sons. Mine will be 14 in just a couple months.
Yes there can be scary side effects with all these drugs, but same can be said with under-treated Crohn's and ongoing inflammation can have some serious side effects as well. As you will find and read, we all wish as parents we had a crystal ball and could know what the right choice to make as a parent is. When it comes right down to it we want them feeling well, pain free and growing and developing like their peers.
There have been many that for them 6MP was a miracle drug and gave them back their child for others it has not worked. It does take a while to be effective several months in fact and dosage may need to be adjusted within that time. Unfortunately we don't know which meds or combination will work until we have tried them.
My son was on Imuran/Azathioprine for several years with no side effects, which is a similar class drug as 6MP. They do regular blood work to check for theraputic levels and liver toxicity. He also had a metabolite (or TMPT) test done before hand to see if he could metabolize it before he started taking it.
We had a hard time reaching theraputic levels apparently he metabolized it a little too well and had to add allipurinol to increase the potency which several other parents have had to do as well.
My husband has been on it for the last 8 years and was on Pentasa only prior to that and had a lot of issues and symptoms. He has had very few problems since he started Imuran and no side effects.
There is a thread/club in the parents section that talks about Imuran/6MP here http://www.crohnsforum.com/showthread.php?t=44911 (OOPS I see Jennifer already posted this.)
I hope you find the support and answers to your questions that I have from this site. And your son is feeling great soon

 

[Dede C.]

Dear Crohn'sParent, I have the exact same disease as your son. I am middle-aged, though, but wanted to respond to say that you are not alone with your worry about getting started on that drug. The GI team at my clinic wants me to take both 6MP and Remicade together... I have hesitated and hesitated.... went 5 years doing well using naturopathic supplements; then had an obstruction in 2006 having been on Prednisone for the 3 months prior .... then surgery to removed the terminal ileum and secum. Was in clinical remission and pain-free for 6 years until my disease came back this past November . . . Now, they want me to start the drugs, and I am still resisting! Started LDN, Glutamine, Pro-biotics, high potency turmeric, and fiber (ground flaxseed every night before bed).... Seems to be really working! just my thoughts.... are his symptoms bad? I had NO symptoms at all.... Hang in there. I am so amazed at all the parents on this forum. you are all rock stars

 

[my little penguin]

My son who is 9 was on 6-mp for about 8 months right after he was first dx.
He had no real side effects from it.
The Gi monitored his blood work very closely .
It did raise his liver numbers ( ast /alt), but as soon as these went up the Gi adjusted the. 6-mp and added allopurinol .
Unfortunately , the 6-mp was not enough to put my son in remission.
It was one of the easiest meds he ever took .
If it works he can easily stay on it for years and reduce the risk of surgery.

 

[Jack2013]

I took 6mp when I first got Crohn's when I was about 10 years old, had no side effects at all on it. One of the easiest drugs I have been on. Gotta do what you gotta do!

 

[crohn'sparent]

Thanks to everyone for the information! It is good to know there is a place to put your questions/worries out there! Thanks again!

 

[gmarks]

hello- I started taking 6MP when I was 13 (Im actually still taking it at 22) I've never had trouble with side effects from it- but Ive never been in remission for longer than 2 years. occasionally my doc would put me back on pred but for the last two years he has had me on entocort as well and Im still flareingout. The only bad part ofr me was the constant blood testing. Speaking as someone who has used it I would rather take the meds than deal with the pain- but It hasn't been working for me so well lately and I'd like to change meds.