Son's 2nd flare up & has been prescribed Azathioprine with scary side effects

[ljward]

Hi there,

My first post on here. My 13 year old son was diagnosed with Crohn's disease just over a year ago after being very poorly. After diagnosis he was put on steroids for 9 weeks and since then has been fairly well apart from experiencing sharp and painful pains in his joints and over his body for the past couple of months. At his last 3 monthly check up, they requested a stool sample as he hadn't been feeling great and also down to the pain. (his last two blood tests had been fine). The stool samples showed inflammation indicating that things were flaring up again. They have very quickly put him back on a different course of steroids (Entocort), but alongside this a maintenance drug called Azathioprine for a minimum of 5 years which he is to start this Monday. This all happened very quickly yesterday at his clinic appointment and although I was told some of the side effects (such as greater risk of skin cancer so he will need to wear sun-screen even in the winter) it was a lot to take in.
I have just read the full side effects on the information sheet with the medication and it has scared me half to death - listing under the common side effects increased risk of various cancers, reduction in blood platelets, decrease in red blood cells, increase in infections etc. I would be very grateful to speak to parents who currently have children/teenagers on this drug to see how they have got on and if it has been worth it! I am really apprehensive about putting him on it at present.

Many thanks,
Lisa

 

[Farmwife]

Hi and welcome.
I'm sorry you have to find your way here.
My girl was dx when she was 3 years of age. She is now 8.
Azathioprine is what she takes now along with Remicade.
She's had no side effects from it.
I know the warnings are really scary but so is untreated or undertreated ibd.
I went from scared of the side effects to scared the drugs will stop working.
Once you see your child start to improve in health you just want to keep it going.

Hugs to you and yours!

 

[my little penguin]

Sorry you had to join us
Most kids have moderate to severe disease
And side effects are just possible
Pull out the Tylenol phamplet -liver damage ,Steven Johnson syndrome death ...
Not pretty there either and it's given to infants but...
The benefits outweigh the risks

The dose for Crohns is very small
Ds was on 6-mp sister drug to aza for 8 months at dx
I was scared as well
For him the meds weren't enough so he was switched to mtx and finally remicade
Remicade worked but he reacted after 8 months
His last switch was to humira 5 years ago
He is only 13 as well

And was dx at age 7

 

[ljward]

Thank you for your replies - I think I was more shocked that they were under the common side effects (may effect 1 in 10) - I was expecting them to be in the rare side effects! Yes, of course it is best to be treated - just quite a lot to take in for both of us. I hope both of your children are keeping well.

 

[Sascot]

Hope the medications help. So long as they do the regular blood tests to pick up any issues problems will be picked up quickly. My son only tolerated Aza for 6 weeks then he was changed to the similar drug mercaptopurine . He has been on it for 5 years now with no side effects. He is careful in the sun but actually doesn't seem to burn any easier than the rest of the family. He doesn't use sun cream in the winter, just starts late spring.