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6MP & remission

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Ulcerative Colitis
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Posted 3/24/2011 5:03 AM (GMT 0)

Hello

My 12 yr old is currently taking 6 MP.  She alternates 50 mg one day and 75 mg the next. We tried to get up to 75 mg every day but the nausea and fatigue was really bad. She also takes 2-4 VSL capsules daily.

For those of you with 6MP experience, did you still have flares?  How often? 

I would like to think that she would not have ANY flares while taking this medication.  She had a big flare in December and had to go on Prednisone for the 4th time in 2 yrs (she took 3 different courses of Pred last year alone) Is it wrong to think if this medication was working for her that she would not flare AT ALL?   I'm not sure what our next step would be - she is not a candidate for Remicade.   Just when we think she is out of the woods and doing great, a flare comes along.

I would love to hear any experiences, advice or suggestions idea

Thanks smurf

Posted 3/24/2011 5:27 AM (GMT 0)
I can sense your frustration and feel bad for your daughter. I think with 6 mp, one should have the expectation of remission (symptom free) and if there is flaring, 6 mp is not doing it's job.

I have a tenuous remission, based on balancing the right amount of mesalamine enemas, orals and suppositories. It's a pain in the neck. I think, mmhhh, if I went on 6mp, I could kick this thing into permanent remission. That would be my reason to switch to 6 mp so if she's not having a good result it's not working.
Posted 3/24/2011 11:52 AM (GMT 0)
How long has she been on 6mp? Has she ever had a Prometheus test to see how she is metabolizing it?
Posted 3/24/2011 1:59 PM (GMT 0)
Was she on 6-MP when she had her flare in December?
Posted 3/24/2011 2:55 PM (GMT 0)
Does she take the tablet before bed? I used to take it in the morning and I had a bit of nausea but since starting to take it before bed, I don't have it as much. I do have fatigue but I Had that before I started 6mp.
Posted 3/24/2011 2:56 PM (GMT 0)
She has been on 6MP for a year and has many Promethius tests to see how she is metabolizing it...last test showed she was doing well and could increase dose if needed/

Yes, she was on 6MP during her December flare

about a year ago, she developed pancreatitis while taking Lialda and Rowasa. I really have not heard great things about methotrexate as far as if it really works, so I don't know what our next step will be.

INDISTHEPITS - I would love to chat with you! Our kids sound very much the same! Mine was also diagnosed at age 10! Pls message me! :)
Posted 3/24/2011 2:58 PM (GMT 0)
Yes, she takes 6MP before bed
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