Imuran (azathioprine) users? Side effects?

[GirlwiththeCurl]

Hi!

I posted here awhile ago in the undiagnosed kids thread. My six-yr-old daughter has since been diagnosed with Primary Sclerosing Cholangitis, Autoimmune Hepatitis, and PSC-related IBD. Right now we are trying to knock her AIH into remission (the treatment for which also is clearing up her IBD symptoms). Anyway, she has been on Prednisone and she is ready to start weaning off that so we have just added Imuran, which will be her long-term drug to suppress the autoimmune hepatitis. I started reading about Imuran side effects, and now I am kind of freaked out (because...young school-age daughter in class over the winter with lots of other germy kids...). I just wanted to hear from other people who had kids on Imuran and what sort of side effects they had, if any.

Thanks!

...And I just saw the treatment clubs and went to check out the Imuran one. It seems no one has reported any particular increase in sickness and infections. But I can't help worrying.

 

[HannahR]

I was on Imuran for about 3 years and I never really experienced side effects. Whats funny is that it does say that your immune system is compromised but I was the only one in the family that wouldn't get sick when it was cold season.
Everyone is different so it is wise to take it a step at a time, you can easily get off of Imuran as it requires no tapering such as prednisone. Just be sure to be in contact with the doctor if your child experiences any really bad symptoms. I hope this will really help her in her road to recovery. Sending prayers!

 

[Maya142]

My daughter was on Imuran and Remicade last year. She had some nausea when starting Imuran but it quickly went away (within a week). I was pretty scared of Imuran and worried about infections, especially since she was on high dose Remicade but she was absolutely fine! NO increase in infections or anything like that - in fact, she only had one cold all year.

Good luck!

 

[Mr chicken]

6-mp here for DS at age 7-8
Lots of germy 2nd and 3rd graders
He was fine
He is now on humira and Mtx again fine at age 11

 

[crohnsinct]

O is not on Imuran but mtx and remicade for three years and she is the healthiest one in the house. She even went on youth group trip where half the group came back with mono but not her!

T has been on mtx since end of January and nothing so far.

My mother with AIH also on Imuran and often on steroids and no increase in infections.

 

[Mehita]

My son was on Aza for six months. No side effects. No positive improvement in IBD either though.

It was summer break when he was on it and not around other kids much so I can't speak to the suppresses immune system for Aza, but he's been on Remi for 18 months and quite healthy.

 

[GirlwiththeCurl]

Thanks, everyone. I feel reassured.

I really hope the Imuran continues to keep the IBD under control as well as the AIH, since she has to be on the Imuran anyway.

 

[DustyKat]

My daughter has been on Imuran 9 years and my son for 5 years and neither has had side effects from it. Both have been at school and university since starting it and my daughter was also living in the city and using public transport quite a bit. They have not picked up any more infections than the average healthy person and certainly nothing serious.

Sending loads of luck and well wishes that all works out well for your lass. :ghug:

Dusty. xxx

 

[Pilgrim]

My daughter had an allergic reaction to Imuran at the 2 week mark. She developed Pancreatitis which took her to the ER.

Don't worry too much but her symptoms were severe abdominal pain, vomiting a number of hours after she took the med, and night time bm.

Hopefully it will be smooth sailing for you there! She is on a different med now which also suppresses her immune system and she gets the same bugs that her siblings do. Sometimes the symptoms present a little differently, but not debilitating.

 

[Caitlin84]

I've been on Aza twice, once right now. I have never noticed any side effects. It seems to be one of those drugs that occasionally some have a severe negative reaction, but most ppl have little to no side effects.

 

[GirlwiththeCurl]

So over the last three days L's stools have gotten looser, and last night she had diarrhea in the middle of the night. Later she woke up and asked for water and said her knee hurt badly and wanted Tylenol and was feeling very cold (she was shaking). It is quite cool in our house overnight and she tends to kick her covers off, so I got her Tylenol and tucked her back up. This morning she seems fine, but I am concerned about the return of diarrhea and joint pain, both of which pretty much went away when we started the Prednilosone. We have only decreased from 18-15 mg. Could that small decrease prompt the return of symptoms? Could this be the start of a reaction to the azathioprine, which she had been on for ten or so days? Am I borrowing trouble? I don't want to hound the nurse, but I don't want to ignore things, either.

 

[Mr chicken]

Just call the Gi
They are used to it
Decreasing Pred can cause return of symptoms
Better for the Gi to know

 

[crohnsinct]

Agree! You are new to this..call the office they deal with this all day. They are the experts. Let them decide. And yes, a decrease of that small would affect my daughter. Good Luck!

 

[GirlwiththeCurl]

Thanks, I went ahead and left a message with the nurse.

I really want L off the Prednilosone, but I want the AIH and IBD under control even more. :\

 

[DustyKat]

How are things going? Have you heard back from the nurse?

Dusty. xxx

 

[GirlwiththeCurl]

Thanks for asking. Yes, I spoke with the nurse. She determined it was not cholangitis (which is a bacterial infection in the bile ducts, and a possible complication of PSC) and then was not concerned. She thought maybe it was a passing stomach virus. I don't know. Yesterday L's stools were almost normal again, but this morning she woke up saying hey tummy hurts. I am going to keep an eye on it over the weekend, and call again if it continues.

 

[DustyKat]

So the reduction in Pred wasn’t a consideration?

So damned hard to wait and watch without clear cut answers.

Thinking of you. :ghug:

Dusty. xxx

 

[GirlwiththeCurl]

No, she didn't seem to think that was a consideration. L has blood work on Monday so if the azathioprine is affecting her liver negatively, which might contribute to diarrhea, we will know something.

Funny how the drug we are giving her to keep the AIH and IBD down can cause liver damage. I realize this is just the reality of it, but... Sigh.

 

[crohnsinct]

:ghug: Almost every drug can adversely affect the liver and that includes all the IBD drugs. With the history of liver issues in our family that is my biggest concern...more than any of the other risks.