Imuran

[Bradsmom]

My son has been on Imuran for one month now while tapering his Prednisone. He is feeling great and has just overcome a cold, but has also had a few warts pop up since starting the Imuran. He is 10 and weighs 65 pounds (was at 57lbs. when diagnosed two months ago). He is currently on 75mg of Imuran. I have been googling all of the awful possible Imuran side effects and am in desperate need of encouragement! Also, our pediatric GI specialist has not been testing his blood on this medicine. He said he wants to see him after two months and will check his blood then, should I be concerned about this? Any advice/encouragement is greatly appreciated! Thank you!

 

[my little penguin]

Yikes
Standard bloodwork for Imuran
Is once every two weeks for a month
Then once a month for three months
Then can be spaced out since Imuran takes 3-4 months to be fully effective
Reason for this is it can be sent quickly to the liver and the liver enzymes rise before damage is done so the Gi would know to lower the Imuran dose right away
This happened with Ds on 6-mp
His liver enzymes kept going up
So we got the call and hour after his blood was drawn to stop his 6-mp immediately
Tagging maya142

 

[Maya142]

So we have been doing blood work weekly for a month, then every other week for a month and then monthly and so on. He should definitely have blood work MUCH more frequently than every 2 months in the beginning.

The reason is that Imuran can do two things that are harmful - drop your WBC or raise your liver enzymes. So they check very carefully in the beginning. I think it's less risky after your kiddo has been on it for several months which is why they decrease the frequency of blood work over time.

). He is currently on 75mg of Imuran. I have been googling all of the awful possible Imuran side effects and am in desperate need of encouragement!

My daughter has been on Imuran with no side effects at all, except slight nausea that went away after a week or two. Is he doing ok with it so far?

We haven't seen any increase in infections or anything like that with Imuran. Just regular kid stuff - like colds. I wouldn't worry about that.

I know it's hard not to worry, but what we realized is that while the meds are scary, the risk of untreated disease is scarier.

 

[Bradsmom]

His gastro specialist took his blood and had it tested to see how his body would handle the Imuran before starting it. The nurse called and told us that he is a "normal metabolizer of Imuran" and to go ahead and start giving it to him. Would this make it so that he doesn't need to check it as often, or should I be shopping for a new pediatric GI specialist?!

 

[Maya142]

My daughter is also a normal metabolizer of Imuran. We have still done weekly bloodwork for quite a while. It's pretty standard to use that schedule in the beginning -- or, if it's not weekly, it's at least every other week.

I would get a second opinion or ask for bloodwork...

 

[my little penguin]

Ds was a normal metabolizer per the test
His liver didn't get that memo though
Just glad we tested

 

[Bradsmom]

That is good to know. It looks like I will be calling his doctor tomorrow and looking into other specialists! Thank you so much for the info.!

 

[Bradsmom]

He has been feeling really good and has no side effects so far, so we are very thankful for that! What symptoms (if any) would I see if he had WBC counts that are too low or liver issues?

 

[my little penguin]

Bloodwork shows first
Ds had no symptoms
Numbers for ast and alt were more than three times the "high" end of normal
That's why they do bloodwork first
Yellowing of eyes ( I think ) is signs of liver failure which isn't something to worry about since he is going to get. Bloods checked

http://www.m.webmd.com/a-to-z-guides/digestive-diseases-liver-failure

 

[Catherine]

My daughter has been on Imuran for 4 and half years with no side effects.

As the others have said blood tests for very important with Imuran. She now has bloods done every 3 months.

We did weekly blood test for 6 weeks, then fortnightly, then monthly etc.

Every time the dose was increased, she went back to weekly blood tests.

 

[Maya142]

Same here - we recently changed the dose and went to blood work done twice a week! Now we're only weekly bloodwork and will soon go to every 2 weeks.

 

[Sascot]

Definitely weekly blood tests to start with. It was only on week 6 that my son started issues with his liver numbers. He had no symptoms but did have a headache for a couple days when he was told to stop immediately.

 

[Bradsmom]

I called his doctor yesterday and asked if there was a reason why he isn't checking him more often than every two months. He said "Remember that test we did before starting Imuran? That test makes it so that your son doesn't need to get poked every week." This doctor has been very on top of things through this whole process and our son has been feeling great despite having occasional headaches. This is all so difficult. It's so hard to trust the life of your child with someone you just met a few months ago.

 

[my little penguin]

Honestly that is not the standard of care international care
Every kid on 6-mp/Imuran has the metabolite test period
And all of them are still checked
I know parents in Canada us Australia and U.K.
And all of them are checked
No one wants there kid poked etc but there are standards for a good reason
Did you ask why the doc isn't following the standard set by the top ped ibd centers in the us

 

[my little penguin]

Please reference ccfa and call other ibd centers you will get the same answer
He needs monitored weekly in the beginning regardless
The sooner you call the better

 

[my little penguin]

https://www.med.unc.edu/gi/specialties/ibd/images/treatment-of-ulcerative-colitis/IMURAN 6MP.pdf

Read

 

[my little penguin]

http://www.ccfa.org/resources/immunomodulators.html

And read this

 

[my little penguin]

After you are on a stable dose, the blood monitoring will be weekly for 4 weeks, then monthly for 3 months and the every 3 months for as long as you are on azathioprine.

From
http://www.hopkinsmedicine.org/neur...eral_nerve/patient_info/AZATHIOPRINE_2007.pdf

 

[my little penguin]

What precautions are necessary?
Blood tests
 Before starting azathioprine you may be asked to have a blood test to look at an enzyme (TPMT). This will check whether your bone marrow cells are more sensitive to the medicine. The result will decide whether this treatment is suitable for you and whether you should use a lower dose.
 Since the liver and blood cells may be affected by azathioprine, you must have regular blood tests during your treatment. This is very important as you may not get symptoms of these problems.
 Blood tests are particularly important during the first few months of treatment.
 As well as monitoring for side effects, blood tests help to monitor your condition to determine if the treatment is effective.
 You will need to have full blood counts and liver function tests every 2 to 4 weeks for the first few months of

treatment and then every 1 to 3 months after that.
 If there are no abnormalities seen after 3 months of treatment at a specific dose of azathioprine, the blood tests may be done less frequently.
 Your general practitioner will be informed about the monitoring schedule. It is important to see your general practitioner if you have been asked to do so as they have an important role to play in monitoring your condition.

From

https://rheumatology.org.au/community/documents/Azathioprine_2014_001.pdf

 

[my little penguin]

Unfortunately the measurement of TPMT levels does not replace the need for careful haematochemical monitoring as only just over ¼ of cases of myelotoxicity will be due to patients with TPMT mutations. In nearly ¾ of patients who develop neutropenia no reason will have been identified.
Measurement of TPMT levels should be considered for patients prior to starting azathioprine if available locally.

From
http://www.bsg.org.uk/pdf_word_docs/aza_ibd_dr.doc

 

[my little penguin]

Laboratory monitoring
Close long term follow up of Full blood count (FBC) and LFT’s is required in all patients taking AZA/MP. The risk of a patient developing a drug induced neutropenia may not occur for many months after starting treatment and this is not accounted for by variations in TPMT levels.


British Society of Gastroenterology
Recommendation

Pre-treatment
assessment
FBC, U&E, creatinine, LFT’s.
Consider TPMT genetic testing or enzyme levels.
Avoid treatment if TPMT homozygous recessive or low enzyme activity


Immunisation with influenza and pneumovax recommended whilst on treatment

Monitoring

FBC & LFT’s weekly for 4 weeks or when associated with dose increase
Once the dose, disease and blood monitoring is stable reduce to 3 monthly
U&E, Creatinine at 4, 12 & 26 weeks, then yearly

From
http://www.bsg.org.uk/pdf_word_docs/aza_ibd_dr.doc

 

[katertot]

Just chiming in to agree about the blood tests. I'm on Imuran and had the metabolite test before I started. I then did CBC and metabolic panel every two weeks for a bit, then every month, and then every three months once my dosage settled. Anytime my dose was changed the whole cycle started over again. I'm 28, so children may be monitored more closely at the beginning. I'm glad to get the tests because my liver enzymes spiked after my last increase, and we are sticking to monthly blood draws for a bit instead of every 3 months to make sure they stay where they should be after bringing the dosage back down.

I would really press this issue with your doctor. It is really important to be monitored when on this drug. Good luck.

 

[Bradsmom]

Wow. Thank you so much for that information!

 

[eleanor_rigby]

Agree - I'm an adult in the UK and it is the same procedure - weekly blood tests at first, then every two weeks then monthly. I have been on azathioprine for 6 months and I am still on monthly. Please change your GI asap! Or go to your GP they can take the blood too?

I also had that test before commencing and was shown to be fine.