reservations about starting imuran

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Chris'sColon
Regular Member


Date Joined Jun 2008
Total Posts : 237
   Posted 2/1/2009 2:33 PM (GMT -6)   
my son's GI wants to start him on Imuran. i've read that it can have some pretty serious side effects in long term use. reading things like "neoplasia" and "skeletal malformations" has got me a little scared. i don't want to trade the problems now for possibly worse problems later, though i know we may have to. does anyone have any experience with this drug in children? been using long? like it? don't like it? have any additional info for me to think about? also i'm a little concerned about keeping him on an imunosuppressant, like i'm gonna have to keep him in a bubble just to keep from catching anything. i would greatly appreciate any info and opinions.
Veronica (26), mommy to Chris (3.5 yr old, diagnosed november 2007 with left sided UC) and Emily 10 months
 
Chris current meds:
 Pentasa 250mg 4x's daily
 Culturelle 1x daily
 


mythmoon
Regular Member


Date Joined Jan 2009
Total Posts : 135
   Posted 2/1/2009 11:24 PM (GMT -6)   
I have no idea what Imuran would do to children but so far the only negative reaction I've had to it has been some hair loss. They monitor your blood pretty carefully while on this medication and the side effects like lymphoma seem to be really rare. But I'm an adult not a toddler so I don't know how much that would help you.
21 yr/old Uni student. Vancouver, BC
Imuran 150 mgs/day

Prednisone 10 mgs/day
Diagnosed UC Sept. 2007
Cal-Mag, CoQ10, L-glutamine and Iron supps. Also now trying probiotics Bio-K (acidophilus)


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 2/2/2009 7:42 AM (GMT -6)   
I've taken it myself, but have not experienced it with children. I haven't had any horrible reaction to this pill, actually no side effects to it. You can ask about the length your child's doctor wants him on it. My doctor took me off it this past month after being on it for a year and a half. I know there can be problems with long term use. Hopefully your child's doctor can give you more information with asking more questions.
26 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


AnnaG
Regular Member


Date Joined Apr 2008
Total Posts : 191
   Posted 2/2/2009 7:50 AM (GMT -6)   
My own experience of Imuran has been pretty positive,I think its keeping the worst of my UC symptoms at bay and the only real side effect I've had is it makes me quite tired.I d'ont seem to have picked up any more coughs or colds than usual,of course I'm speaking as an adult,and I understand your reservations in giving it to a child,the only thing I can say is you have to weigh up the least of two evils, for a child being on any on any med is less than ideal,but then I'm guessing no doctor would offer Imuran without trying other options first,and Imuran is quite an old drug now meaning that it has been used safely for quite a few years,doctors will moniter blood for any changes.
If it makes him well so he can enjoy life again I know what I'd do,I did meet a couple with a young daughter,who had UC they tried diet everything they possibly could to avoid her starting on imuran untill it got to point of that or surgery to remove the colon,anyways she is fine now and back at school.
Anyway takecare,I'm sure it will work out for you try not to worry to much and keep positive for your son

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5963
   Posted 2/2/2009 8:51 AM (GMT -6)   
     Oh I am so sorry to hear you have such a young son with this illness.  My heart goes out to you.  I am an old lady of 62 and didn't get UC until I was 52.  I have been on 6MP, which is similar to Imuran, or so I've been told, for five years and the only side effect I have noticed is thinning of hair.  My pancreatic enzyme levels were very high when I was admitted to the hospital last May and my GI doctor was concerned that it was the 6MP causing this and took me off for about a month.  At the end of the hospitalization (10 days) my enzyme levels had returned to normal.  My GI doctor put me back on the 6MP about a month later because I was on prednisone and couldn't seem to be able to taper without my symptoms returning.  The 6MP took about three more months to kick in.  I was on the prednisone till the 1st of November.  My GI is more concerned about the effects of prednisone than the 6MP.  I do have to have monthly blood tests and my white count is quite low...2.4.  I lowered my 6MP dosage to 50 mgm (unbeknownst to my GI doctor...don't recommend this) and my white count is still low.  I will tell him at my next visit...he knows I do things like this.  My pancreatic enzyme levels are still within normal limits and I often wonder if the hospital lab made some mistake in the first place.
     To put your mind at somewhat of ease....I saw a GI surgeon after I was discharged from the hospital and still in a flare.  I told him my concerns about the 6MP and he said in all his years of practice (he is probably around my age and considered one of the top GI surgeons in the US) he has only run across one patient who developed Lympoma while on the 6MP and who is to say that patient wouldn't have developed the disease even if not on the 6MP.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


Chris'sColon
Regular Member


Date Joined Jun 2008
Total Posts : 237
   Posted 2/2/2009 9:24 AM (GMT -6)   
thanks for the feedback. most of the patient's opinions i've read seem pretty positive, it's just the FDA warnings that have me scared. i'm gonna call the GI today to discuss some of the issues.
Veronica (26), mommy to Chris (3.5 yr old, diagnosed november 2007 with left sided UC) and Emily 10 months
 
Chris current meds:
 Pentasa 250mg 4x's daily
 Culturelle 1x daily
 

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