Mercaptopurine/Adalimumab

[Cast2908]

Hi everyone!
I haven’t wrote on here for a while as my son has been ok. He was on the medication ‘azathioprine’ and unfortunately either had a flare or they didn’t agree with him. We ended up in hospital for 13 days!! He was very sick and run down and inflammation levels were super high. He has also had the c diff come back which has also made him unwell.
I spoke to the IBD team yesterday and they have suggested the next course of action, just wanted some advise from anyone to know if these are the normal next steps and if you all think it’s safe for a 10 year old.
They are starting him on another antibiotic to treat the c diff and the mercaptopurine and once the antibiotic has finished he will then be on adalimumbab injection.
How safe actually are these as I don’t want to leave him not on anything but after the first ones he started that made him sick I’m really nervous!
thanks!!

 

[my little penguin]

Aza is imuran and that is a sister drug of 6-mp (Mercaptopurine)
So if he had issues with aza he probably will have the same issue with 6-mp.
My kiddo had issue with 6-mp at age 8
And is not allowed to take imuran(aza) due to this .
Add in imuran or 6-mp are never recommended for young males to be combined with anti tnf alpha biologics due to fatal T cell lymphoma risks.
Ask for methotrexate plus humira
Methotrexate does not carry the same risk
My son was on mtx plus humira for over 5 years before switching to mtx plus Stelara .
Hugs

 

[my little penguin]

https://www.crohnscolitisfoundation.org/emr/emr-ibd-education-tool/mercaptopurine-6-mp

 

[my little penguin]

https://www.crohnscolitisfoundation.org/emr/emr-ibd-education-tool/azathioprine

 

[Cast2908]

https://www.crohnscolitisfoundation.org/emr/emr-ibd-education-tool/azathioprine

Thank you for all the advise you have been giving me recently. It’s really helpful.
I do have another question you might know the answer to…

he has been taking the mercaptopurine since May 26th. He’s had 2 blood test since then and he’s inflammation markers have gone down to 17!! The best they have been for a year and a half. All the blood has stopped and he seems fine in himself.
A blood test a couple weeks ago they said he’s pancreatic enzymes were slightly raised. The results from yesterday they said the amylase is now 267 so it’s still going up. They have said to stop the mercaptopurine until he’s level go back down.
Basically my question… I’ve been googling and can’t find a chart of any sort, what is considered to high for amylase… is 267 only slightly high so should I be worried

 

[my little penguin]

Tagging @Pilgrim
I think one of her kiddos had issues with aza .
Honestly I would ask for another drug
Methotrexate since your kiddos pancreas is not happy at all with the aza

 

[Scipio]

What are the units in that 267 amylase report? 267 could be seen as high or as only moderately elevated for amylase depending on which units the laboratory is using in its reports.

See:
https://emedicine.medscape.com/article/2054386-overview

 

[Cast2908]

I have no idea, they just called me today and said he needs to stop taking the 6mp. They initially said high enzymes in the pancreas and then said high amylase of 267. Sorry I have no idea what they mean half of the time.

 

[Pilgrim]

My daughter developed pancreatitis from Azathioprine (similar to 6mp). She had high amylase but it wasn't caught until after the attacks of pancreatitis. No child should go through that. Maybe a move to methotrexate would work for him.

 

[Cast2908]

Update- had bloods done yesterday. (He’s not been on any medication for just over a week now) had a call from the hospital to say all he’s levels are completely normal including inflammation etc so no more blood tests for 4 weeks. they said he can now restart the 6mp.. me and my husband are wondering If we should keep him off everything as it’s all normalizad on its own over the past week. What are everyone’s thoughts? They got me off the phone very quickly so didn’t have time to ask.

 

[my little penguin]

If your son does not take any meds then the odds are high he will have inflammation that can cause scar tissue
Scar tissue can not be fixed
It can lead to obstruction/fistulas and surgery to remove parts of the intestine .
Ask about trying methotrexate since 6-mp made him sick
Do not feel bad about call back or telling them your opinion
You are the mom
He is your top priority
They have many priorities and your child will get lost on the shuffle
Not taking meds or not treating is not an option

een (formula only ) can be used long term
But is very difficult for children more than a few weeks but has less side effects than steriods
Steriods can not be used long term

biologics are my drug of choice
Most bang for the buck in terms of effectiveness and least side effects

but my child has been on them for 12 years so …
Very biased to biologics

 

[Cast2908]

Ok thank you for your response.
how annoying, I thought that as everything’s normal he won’t need anything until he’s next ‘flare’. I will definitely call them back and ask about the switch.
thanks

 

[jelena]

My daughter developed pancreatitis from Azathioprine (similar to 6mp). She had high amylase but it wasn't caught until after the attacks of pancreatitis. No child should go through that. Maybe a move to methotrexate would work for him.

My daughter started 6 mp about 7 weeks ago and so far they have only been checking her liver enzymes, not the amylase . Its my biggest fear that she could develop pancreatatis. can yoy plese explain how the pancreatatis looked for your daughter and if she is ok now. Its beyond frustrating and sad that our kids cant get biologics straight away and have to go through this . Thanks in adavance for your reply

 

[Pilgrim]

Starting a few hours after her dose of Azathioprine she would wake up in pain, after a bit it would subside. But it happened several nights running with increasing pain each night until it was excruciating pain. Emergency level pain.

 

[Maya142]

My daughter also had pancreatitis, although not from Aza/6MP. She also had horrific stomach pain - she says she's never been in so much pain (and this is a kid who has been through a LOT - including 11 surgeries). She was also extremely nauseous and if she hadn't had a G tube we could drain from, she would have been vomiting. She ended up in the ER - it really is "emergency level pain" as @Pilgrim says. Her amylase and lipase were very high.
If your child doesn't have severe stomach pain, nausea or vomiting, then they probably won't check her amylase or lipase. IF she develops those symptoms, then they will. And that will tell them very quickly if she has pancreatitis or not.