Any other ideas.....anyone

[my little penguin]

DS tried 6-mp. HIgh liver enzymes so GI added allopurinol and cut the dose from 50 mg to 12.5 mg.
Ds wasn't at therapeutic range so we increased the 6-mp to 25 mg.
His liver enzymes went back up even with the allopurinol.

Although his SED rate is normal 8 down from a 34.
We are now doing all the pre -tests for remicade or humira including another scope.
DS is also having a TB test, A RAST blood test for mouse protein , a SPT test for remicade and humira. SHould be fun times ahead.

GI is looking hard for a option "b" but so far nothing after two weeks.

I wish I had answers but I don't other than we have to do the best with the meds they have now and hope there are better drugs in the near future.


So can you stay on 6-MP and have it be effective long term even if your are not able to get in the therapeutic range?

GI basically said he is to sick for 6-mp but not sick enough for remicade.Doc wants to save it, but as of now does not see any other drugs to try. :stinks:

Ds does not have bloody stool or diarrhea just rectal prolapse and constipation. WHy do docs get "stuck" on diarrhea. :voodoo:


I mentioned high dose low dose on the 6-mp but not sure what his levels were on the 25 mg yet. AS well as LDN. I am waiting for a call back. I also asked for a pill cam in addition to the scope since he has not had one of those.



I will have DH try to get a copy the blood tests at the hospital on Friday.

He has been on pred, EN, pentasa, amytripline , and periactin.

He is now on:
50 mg allopurinol
12.5 mg 6-mp
1600 mg asacol
30 mg prevacid
peptamen jr with prebio
plus asthma/allergy meds.


and he is only 8.

 

[LittlebitsMommy]

I am sorry you are going through this with your son. I know how hard it is. My DS is 12 and also on 6mp. Liver counts have been high the last couple of times. Waiting on labs we had done yesterday.

Thinking of you and your little guy

 

[izzi'smom]

I can't help with your questions, but ??? at too sick for 6mp but not sick enough for Remi?! I would respectfully get another opinion if your GI is unsure where to turn next...it can't hurt!

 

[DustyKat]

I don't know about the disease response if the 6MP isn't therapeutic but I wouldn't dismiss anything with this disease. I have no reason for thinking this but I would well imagine there are people that don't fall into therapeutic range but still respond well to the drug??

My kids have never had the thiopurine metabolites test done so who knows what theirs is doing!

I get what the GI is saying in one way about him being too sick for 6MP but why is he not sick enough for the biologics?
The pyramid is immunosuppressant...fail...biologic. If he doesn't want him to take that next step then has Methotrexate been discussed? It is in the same class as Imuran/6MP but is a little milder and actioned differently, it also has anti inflammatory properties.

Dusty. xxx