Update on my son and Remicade

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Regular Member

Date Joined May 2008
Total Posts : 172
   Posted 4/2/2009 1:17 PM (GMT -6)   
Well, my son had his 4th  infusion and is doing great on Remicade.  I thank you folks that informed me of PAP or he would never have afforded it.   He has no pain, no urgency feeling like before all day,  no bleeding etc.  He's been off all Asacol since his first infusion, but his doctor still had him taking 3 Purenithol (6MP) a day.
This past visit though, his doctor told him to wean off of 6MP with 2 a day for a week then 1 a day, then none.  The only thing still going on is that my son still has 4 or 5   loose movements first thing in the morning.  But then that is it for the whole day.
For him that is a great improvement  :-)  We looked at the side affects of 6-MP and one is diarrhea and loss of appetite. My son has no appetite now,  and so we were wondering if anyone who is on 6-MP has those two symptoms.  He also gets little red rashy sores on his body here and there.   We are wondering if when he is
totally off of 6-MP his loose BM's will cease and he'll get an appetite back.  We are
hoping for that.  Before colitis hit him about 8 years ago, he had a perfectly normal bowel function.   The doctor said that the Remicade is working great for him and all his blood work came back looking normal.  No infection.  He said it seems the Remicade is a great modulator for my sons immune system and has it working more normally now.  I can't wait till he is weaned off of 6MP to see if it normalizes him again to just one or 2 movements in the morning.  He doesn't get paranoid anymore about wiping everything down with an antibacterial wipe.  He did get a cold this winter,  with an annoying cough, but so did I and my husband.  It ran it's course just like mine did, and he is fine now.   So, I'm thinking the remicade is the way to go, and more folks should look into it if nothing else is working for you.   The 2 hours, every 8 weeks is actually not bad, and goes fast.
He takes his laptop with him, and catches up with stuff.  He has  absolutely no
reaction from the infusion, feels great right after, and not even tired.  It is the answer to all my prayers, and again I thank  you gals who suggested it and
told me all about PAP because there is no way on earth I would ever have heard
of Remicade or PAP if you folks here at Healing Well didn't discuss it.   Even his old doctor never suggested it, so we switched doctors.    It has been a true blessing and I sure hope all you folks with this disease could find this kind of help.  Good luck to you all. Caring Mom

Mamas Boys
Veteran Member

Date Joined Oct 2005
Total Posts : 1460
   Posted 4/2/2009 2:06 PM (GMT -6)   
so glad your son is doing well. I've been doing great o Remicade for quite a few years now.  Hope your son continues to improve!

Mamas Boys
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!

Veteran Member

Date Joined Mar 2008
Total Posts : 1202
   Posted 4/2/2009 9:56 PM (GMT -6)   
Our 6th infusion is next Tuesday. Working fine, compared to where we were 6 months ago--although i just heard the toilet flush 3 times in a row, and it is enough to scare me!
Glad the Remi is working--we are almost out of tricks too.
Daughter,15 diagnosed 1-08 w/ UC .
Previous drug sampling: Asacol, Prevacid, Flagyl, Prednisone- 50mg to 0, 4 major flares '08.Hospital four x. Low residue diet,
6MP, Colazal , Cortifoam enemas,
Trying probiotics, Niferex, fish oil, Magnesium, Acupuncture.
Remicade 10mg per kilo@ 8wks, since 10-08. Still on 6mp and Colazal

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