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Parents with KIDs on 6mp/Pentasa

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Crohn's Disease
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Posted 4/17/2013 9:42 PM (GMT 0)
We're new to this disease, have a daughter 9yrs. old diagnosed with mild crohns in upper/lower intestines. she's on 4 tabs of pentasa a day, we still see on occasion blood in stools.  She's had all the testing possible, doctor feels we should stay on pentasa, but we could go to 6mp.  just afraid of side effects.  can anyone tell me what there child is going thru on the 6mp?  is it working? has it stunt their growth?  Loss of hair? etc.  are they doing much better?
Posted 4/17/2013 10:50 PM (GMT 0)
Hi, our 11 year son has chrons and has currently been taking Imuran 50mg upgraded to 75mg a few days ago. He has been suffering from headaches and a lot of feeling sick in the stomach. His doctor has told us that if this does not improve they may have to put him on 6mp instead. Se said it was the same as Imuran but not as harsh with the headaches etc. I really don't know if this is correct or not, still have some research to do about it.
Good luck, maybe we could keep in touch with information we have or find out since this is new to both of us and our kids are around the same age.
Posted 4/17/2013 10:57 PM (GMT 0)
hi again, if you check out our previous post , Mycobacterium avium subspecies paratubercculosis (MAP) - new member I try and explain about a new treatment that we have been advised to start, though we are still deciding at the moment.
Posted 4/18/2013 3:00 AM (GMT 0)
Hello,

My son is 17 years old and has been on 6mp for over a year. We were very anxious about him starting the drug just like you are and I am sure if you are like me that you have spent hours reading all the info you can on 6mp. I still wake up at night and worry about him taking 6mp and I just hope that it will not end up harming my son. However, I do know that crohn's left untreated can do untold damage to the body.

He seems to be doing well on 6mp his crohn's is under control he has had other problems related to prior surgeries. He takes it before he goes to bed and has not experienced any of the nausea,headaches or any other side effects other than a little hair loss but as a boy he just gets it buzzed when it becomes noticeable. Dosage he takes alternates between 75mg and 100mg every other night.

It is very important that if you choose to take 6mp that your daughter has regular blood work. Every few weeks after starting than it gets less frequent after they have monitored her for a while. The GI Doc will do some testing before starting 6mp to see if your daughter has an enzyme that will enable her to break down the drug. This blood goes to the Promethus Lab for testing. Also during treatment they will send her blood there to check to see if your daughter is getting the proper dosage to keep her in a therapeutic range.

Wishing your daughter all the best and from one mom to another I would like to tell you not to worry yourself sick about it but I know you will. Many people on here have taken 6mp for years with great success.
Posted 4/18/2013 10:30 AM (GMT 0)

The previous reply you got from Dingleeire is right on. We're all afraid of these medications, but I can't stress enough how much worse it is to let this disease rage out of control. You don't want the disease to be doing serious damage.

Hopefully as you indicated, your Daughter is on the mild side, and her symptoms will be well controlled. You will get alot of differing opinions on Pentasa. Some will tell you that it has worked well for them. Most GI's don't prescribe it anymore, as they don't feel it is an effective treatment.

I'm not trying to suggest that I know for sure that it doesn't work, just trying to inform you that you should get more opinions on Pentasa before relying on it alone.

THe step up to 6mp or imuran is a logical one. Good luck with your decisions, be informed, do the best you can, and your Daughter will stay way ahead of this disease, and live a normal life.

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