My son has been on 6mp for a year and a half. His dose started at 50 mg and has been adjusted almost constantly since he started. He started to have very high 6-MMPN and 6-TGN levels about 3 months after starting 6mp and his dose was cut in half and the Dr. added Allopurinol. Long story short, we are now back to the 50 mg dose we started at. He is doing well physically, labs are great, and Fecal cal is normal (64) after being 586 in July. He really couldn't be doing any better. But his last blood draw showed his 6mp level is sub therapeutic. The Dr. gave us the option of staying on the 50mg dose and having Johnny in the sub therapeutic range or raising the dose to alternating 50/75mg dose. This could land us back where we were with the risk of Leucopenia and Hepatotoxicity. The Dr. left it up to us to decide.
So my question is, has anyone had long term success at a sub therapeutic level of 6mp? Or should we try the higher dose?
His labs numbers are:
6-TNG 6-MMPN Dose
1/11/12 586 6968 50mg
2/17/12 606 2025 25mg
3/23/12 292 758 25mg
4/23/12 211 769
5/30/12 377 891
7/02/12 266 1016
11/26/12 206 757 37mg
1/22/13 130 739 37mg
2/25/13 161 2190 50mg
4/15/13 134 1524 50mg
6-TGN reference range 230-400
6-MMPN reference range <5700
The GI said he had no explanation why the 50mg dose effected him so much before and now it does not. I did tell him that when Johnny was first diagnosed our old GI gave us strict instructions about taking the 6mp. No food or milk products one hour before or two hours after. Once we moved to Cincinnati our GI said that we did not need to follow that regimen. We stopped being careful about it around December 2012. His GI just nods his head when I talk to him about this. He doesn't feel the two are related.
So my question is, has anyone had long term success at a sub therapeutic level of 6mp? Or should we try the higher dose?
His labs numbers are:
6-TNG 6-MMPN Dose
1/11/12 586 6968 50mg
2/17/12 606 2025 25mg
3/23/12 292 758 25mg
4/23/12 211 769
5/30/12 377 891
7/02/12 266 1016
11/26/12 206 757 37mg
1/22/13 130 739 37mg
2/25/13 161 2190 50mg
4/15/13 134 1524 50mg
6-TGN reference range 230-400
6-MMPN reference range <5700
The GI said he had no explanation why the 50mg dose effected him so much before and now it does not. I did tell him that when Johnny was first diagnosed our old GI gave us strict instructions about taking the 6mp. No food or milk products one hour before or two hours after. Once we moved to Cincinnati our GI said that we did not need to follow that regimen. We stopped being careful about it around December 2012. His GI just nods his head when I talk to him about this. He doesn't feel the two are related.