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Is Azathioprine commonly used for children with UC. How safe is it?

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Ulcerative Colitis
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Posted 2/16/2012 8:53 PM (GMT 0)
My daughter was dx with UC at age 7.5yrs. Her doctor put her on Apriso(2 tabs/day) and Prednisone(25mg and slowly weaning). After she was off Pred in 2 months, the symptoms came back with high fever. He had no choice but to put her on Pred again for 6 weeks. Same thing happened again. Once she was off Pred, she had severe typical UC symptoms. Her doctor put her on Flagyl fro 2 weeks. Only helped while on Flagy and we were back to square one. Looks like Apriso did not work for her. She is on Pred again(30 mg and slowly weaning). We know how bad it is to be on Pred for so long. I guess we had no choice but to put her on Pred the third time in 7 months. Now her doctor wants her to go on Azathioprine(50 mg/day1 and 25mg/day 2...). I have been reading so much about this drug and it's horrible side effects. It scares me, but we are left with no choice.

So how many of you have given this to your child? How safe is it in your opinion? Even with frequent lab works, did you have peace of mind? Do you recommend this pill for a 8 YR OLD? Is anybody in this forum been in this situation like I am? What did you do? If you saw any side effects, how bad was it? What are the things to consider and watch for (other than what you read online)while your kid is on this med?

If any of you have had a good exp with this med, then please post your exp.

Thank You

Natalie
Posted 2/16/2012 9:35 PM (GMT 0)
Sorry I don't have advice but I am hoping you get some answers. I myself am considering 6mp and have been too afraid to take it. I can't even imagine making that decision for an 8 yr old. My oldest is 9 and I pray neither of my kids ever get this terrible disease. My thoughts are with you.
Posted 2/16/2012 10:57 PM (GMT 0)

I'm sorry to hear what your daughter is going through. My 8 yo son was diagnosed with UC almost a year ago and he was steroid dependent. Four times he would be weaning off and each time he would flare again. The flare would happen every 8 weeks or so. He also took vancomycin (antibiotic like flagyl) and responded well to this which suggested to us some kind of bacterial infection. It sounds like your daughter responded well to flagyl yes?

We were at the point where his doctor wanted to put him on Imuran (Azathioprine) but I had been doing alot of research about alternative treatments and we decided to try fecal transplant at home first to see if it helped. That was almost 3 months ago and so far he is doing very well. I dont know if it will be a lasting treatment for his UC but so far it has worked well for him and we have so far avoided Imuran.

Sorry I didnt answer your question about Azathioprine but I thought you might like to hear our story as your daughter's symptoms seem similar to my son's.

Posted 2/17/2012 12:03 PM (GMT 0)
Ask your GI about how it may affect growth and development.  I was told drugs like 6mp would in fact slow it down a bit....On the flipside, biologics almost seem to do the opposite?  Both classes of drugs have scary profiles, but are "generally" safe and effective in refractory patients. 
Posted 2/17/2012 5:25 PM (GMT 0)
Hi EDbar,

What is a fecal transplant?
Posted 2/17/2012 5:35 PM (GMT 0)
Have you tried any other 5ASAs? Some people do better on different types. Apriso is lower dose than many of the other options. There is also the option of trying rectal medications. I know it's probably not easy to get a child to use these medications but they are helpful for rectal inflammation.

I am on 6mp and while I was very scared to start the medication, I was in a similar place to where your daughter is (except I am old). I had been on steroids and I wanted off! I had tried a few different mesalamine medications and some antibiotics and I couldn't taper off pred, I finally started 6mp after months of struggling with a flare up and I've been doing much better since. I am surprised that more of the parents haven't responded. We have quite a few with children who have struggled with UC. There is another forum http://www.dragonpack.com/ibdsupport/parents/ that is specifically for parents of children with IBD. You may be able to find some information there.
Posted 2/17/2012 6:49 PM (GMT 0)

The theory is that with some (if not all) UC suffers the good bacteria in the colon has been compromised and is pretty much non-existent. As a result the bad bacteria has taken over and causing the symptoms of UC.

Many people take probiotics orally trying to repopulate the colon with good bacteria. This works to a certain extent in some people but the gut flora is made up of hundreds of different bacteria strains which you can’t get from probiotics.

Fecal transplant is taking the stool of a health donor (after the donor has been screened), mixing it with saline solution and transferring to the sick person as an enema. If you’ve never heard of it before you are probably grossed out right now but this treatment has been used by doctors to treat people with c diff infection and has a 80+% success rate with c diff. There is no real data with it being used for UC.

If you search “fecal transplant” at the top of this page you will find a lot of information and discussion about it or just google it. There is a doctor in Australia, Dr Borody, who is the pioneer for this treatment and does it for UC also. He also has a protocol for doing it at home.

Unfortunately I have not come across a medical doctor who will do FT for UC and definitely not with kids.

I don’t know how open your daughter’s doctor is to this kind of treatment but maybe you could ask.

I wish your daughter the best of luck with whatever treatment you decide.

Posted 2/17/2012 8:00 PM (GMT 0)
We tried rectal med too. After three days to using it the the symptoms got worse. Not sure if it was because of the rectal med or something else. We got worried and stopped giving it to her.

notsosicklygirl - How long have you been on 6MP? How often do you get your labs done? Did you have any side effects when you started taking this drug? I know 6MP and Azathioprine are not the same but similar drugs. Do you know why your Dr chose 6MP over Azathioprine? Do you know how long you are going to be on this med? They say after 5 yrs, it becomes toxic. Is this true? Do you know anyone who has taken this drug all their life and have had no issues? If the blood count drops then after stopping the drug, do you know if it comes back to normal?

Folks pls reply and let me know your exp in taking Azathioprine.
Posted 2/17/2012 8:16 PM (GMT 0)
Hi Natalie-

My dd is on 6-MP and has been for almost 2 years-
She failed the 5-ASA's and was also steroid dependent- while she was on Prednisone the last time
she also started on 6-MP as we also had no choice if I wanted her off Predniosne.

She has been in remission ever since. She is now 11 and in 5th grade. She has no side-effects
and we now see the Pedi GI every 3 mo because he wants to lay eyes on her, check in and have her
labs checked. Thankfully she is great, her labs have been great and she gets to be a normal kid.

She is growing well and doing great.
I also give her VSL#3 daily and I do not give her dairy in the way of milk, yogurt but she does
eat cheese.

The plan is to keep her on this med and get her through puberty and then we will re-evaluate.

Many people have used 6-MP for much longer than 5 years and do great.

It is much worse to be on prednisone than 6-MP-

If you want to put your e-mail in your profile I would be happy to e-mail you.

I will check back to see if you have any other questions :)
Posted 2/17/2012 9:25 PM (GMT 0)
what is VSL#3 daily?

Folks - Is this becoming common with kids in the US? I have not heard of anyone with this illness other than my dd.
Posted 2/18/2012 3:30 AM (GMT 0)
My son has been on azathioprine (Azasan) for almost 5 years (started it at age 15). My daughter has been on 6mp (very similar to aza) also for 4.5 years she was 8 at the time. Both kids are doing pretty well. My son has only had 2 flares (not too bad) since then and my daughter only 1. Before aza, my son flared EVERY year, now it seems to be every other year.

I was terrified to start them on it, but what else were my choices. My son had been flaring for over a year and my daughter had just been dx with moderate to severe pancolitis. So far, so good. Both are living nearly normal lives. My son is very active in college and my daughter dances in 4 classes per week and is going to try out for the cheer leading squad soon.

Feel free to email me if you want to talk.

p.s. My daughter just turned 13 today (my signature still says 12)
Posted 2/19/2012 5:43 AM (GMT 0)
Hi Natalie - So sorry to hear of your struggles. My son was diagnosed with UC in November 2010 - pancolitis. Getting him stable-ish took almost a year due to several bouts with c-diff, which I don't wish on anyone. After it was clear that just 5ASAs weren't working for him, we put him on 6MP. He's been on for about 8 months and it's definitely helping, but not perfect. So far, no side effects. He gets labs done every 3 months or so. He continues to have a high ESR, which is a concern. But, I am not going to give up on 6MP for quite awhile. At the moment, it's as strong a drug as I want to deal with right now. There is definitely scary info about 6MP and similar drugs - my doctor told me that my son is on a far smaller dose than would be given for someone with leukemia, which I believe 6MP was originally developed to treat. I worry all the time about possible side effects. Can they possibly know how these drugs will affect children for the long term? I don't think so. There is a leap of faith involved.

I did a lot of research, but also felt a little bit like we had no choice. I talked to a lot of doctors, and - unfortunately - because there is no cure for UC at the moment, it's all a little bit of an experiment. I don't mean any disrespect by saying that, it's all just kind of unknown. With UC, they treat the symptoms and not the disease, all the drugs used were pretty much developed to treat something else initially.

Keep asking questions and stay strong for your daughter. As is clear to me already, you know that you are her only advocate. Don't stop fighting.

BTW - VSL3 is a probiotic. I think it's the reason my son finally kicked c-diff. www.vsl3.com
Email me if you want to discuss more or have more specific questions. I completely understand the situation you are in, as I'm sure a ton of other folks in this forum do as well.
Posted 2/19/2012 4:12 PM (GMT 0)
UC Parent-

Just wanted to tell you that my daughter also had elevated ESR while on 6-MP.
I read something about 6-MP causing the ESR not to be accurate.

We now only check CRP level- another marker for inflammation and it is within normal
range.

If the elevated ESR is your son's only symptom to make you think 6-MP is not totally working
please have the Dr order a CRP level- you may be surprised.
Posted 2/20/2012 5:16 AM (GMT 0)
UC Parent - your email is not available. Pls feel free to email me.
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