6MP in Children

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myboy12

myboy12

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Jan 6, 2014
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My 12 year old son started 6MP started 9 days ago and we were told by his doctor that it would take about 6 weeks to start building in his system. I have read that is more like 3 months. Does 6MP ramp up faster in a child than an adult? I am worried that he will be prone to a flare, as he will be done tapering his Prednisone in 4 weeks.

Also, when do most children have their first blood test after starting 6MP? Our is scheduled 3 weeks after starting 6MP.
 
I think the key words there myboy are starting building in his system, it takes about 3 months to become fully therapeutic. Imuran/6MP is normally started at the same time as Prednisone because of this build up period but you will find that many people do finish the Pred at about the 6-8 week mark. The 6MP will be in his system by then and if the Pred has done its job then the 6MP should start to take over at about that point. I would keep a close watch on his symptoms and overall well being and if he is improving and there are no setbacks as he tapers he should be okay. If you have any concerns then stay in close contact with the GI.

For us bloods were done weekly for at least the first 4 weeks. GI’s will differ in their monitoring regimen but this is the one that I personally prefer:

Table 0901.jpg

Good luck, I hope all goes smoothly! :ghug:

Dusty. xxx
 
Yes like Dusty says "to become fully theraputic" I will say in our experience it took us almost a year of adjusting meds to get to the fully theraputic level. However symptoms were not nearly what they were prior to starting Imuran. We were every 2 weeks at first, then every other month
 
Same here DS took 6 weeks to get some in his system .( he did EEN with it instead of pred )
But reached therapeutic levels at 3 months .
We also had labs every two weeks
But his went to his liver so we had to stop it .
 
So the bloodwork will indicate if his liver is processing the 6mp properly and if it has reached a therapeutic level? One problem we have is that, for the most part, his bloodwork looks pretty normal compared to the inflammation seen during the scopes. We are pushing for a fecal cal test, but our doctor wants us to hold off for now.
 
^^BTDT Jack's bloodwork (ESR, CRP)is almost always in the normal range. They ran specific test to check for theraputic levels since he was still having symptoms (TMPT, I think I'll look it up but someone may chime in and correct me in the mean time) Liver toxicity is checked at each blood draw through usually the AST and ALT will reflect liver toxicity. FC seems to be one of the few tests that give us an accurate picture of inflammation
 
The TMPT test we took before starting aza to see if he could metabolize the aza and it was the liver function tests we took during treatment
 
TMPT test - this is to check that you have one of the key enzyme’s present in the liver that helps metabolise the drug. Presence of this enzyme normally means you won’t get the more serious side effects of the drug but it some cases it is no guarantee.

6MMP/6TGN - these are levels that are a little further down the track into treatment. They test the level of metabolites (6MMP/6TGN) in the blood and that will indicate whether the drug dosage is too low, normal or too high.

Liver Function Tests (LFT’s) - these are the week to week, month to month baseline bloods that will show if the liver is coping with metabolising the Imuran/6MP or whether it is under strain and the drug needs adjusting or to be stopped.

Dusty. xxx
 
Good luck with the 6mp. My son has been on it for about a year now. Not really sure how long it took to be therapeutic as he had no tummy issues to judge with.
Blood tests were done weekly to start (for 8 weeks) then every 2 weeks and then monthly and now 3 monthly. The most important one was the ALT to check liver was coping.
 
Our GI starts Imuran/6mp at the same time as prednisone, then keeps the prednisone going for 3 mos until the Imuran/6mp has kicked in. Our GI does bloodwork every week initially for Imuran, then gradually increases the time between labs if all looks good.

In our case, my 8 y/o son ended up being on Pred for a total of 5 mos, as he could not tolerate Imuran and had to switch to MTX. So we needed a bit more time on Pred to avoid a relapse while waiting for the MTX to kick in.

Take care. Hope your see some improvements in your daughter soon.
 
I have to say I am a little uneasy about running the first bloodwork 20 days after starting 6MP. We have questioned our Pediatric GI several times and we have been told that 3-4 weeks is the standard time frame in their practice.

He did have a normal read on his TMPT prior to starting the 6MP. So far his physical symptoms are good, aside from being a little tired. Fingers crossed!
 
Your GI may have wanted to wait for the Fecal cal because while your son is on pred the results may not be as accurate. It is a great tool though, so hopefully you will have access to it at some point to monitor inflammation if his blood tests are normal despite having inflammation.

We have had great success with 6mp, I hope it works for your son too!
 
Just an update...going for blood work Wednesday morning! We have a followup appointment next week, at which point we intend to set a schedule for blood work that we are comfortable with. Nothing worse than being more worried than you have to! Thanks for all the advice!
 
:) Good to hear myboy.

I hope all goes well for your lad, bless him. :ghug: Good luck with the bloods and the schedule setting!

Dusty. xxx
 
Help...I am so frustrated, after being on 6mp since January 9th, we found out yesterday that mild disease activity has returned. My son developed a canker sore, food aversions and was generally tired. We knew we had a problem...

His SED rate is up to 23 and his hemoglobin has dropped to 12.2. CRP up slightly to .4. Even more alarming, cause his bloodwork never indicated anything before. Awaiting 6mp bloodwork and fecal cal test results.

His GI doc decided to alternate his 6mp to 75mg every other day for now. Does it take some adjustments to get the 6mp level therapeutic? So worried this is an early indication 6mp will not work. Frustrated since we spent 8 weeks on prednisone and after being off 1 month symptoms returned. :ymad:

Any thoughts???
 
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It can take adjusting for some people but also you haven’t hit the three month mark yet and for some it can take up to six months to become fully therapeutic. The bloods and FC will give you an indication as to where things are heading and I hope it is good news hun. :ghug:

If you have already been off the Pred for a month then that may not have helped the situation. :( Generally you would be on the Pred for about 8 weeks with the 6MP before stopping.

Have you ever tried EEN?
Going down this path now may help settle things down again and give the 6MP a chance to work.

Dusty. xxx
 
^^^ Yeah that, it took us a lot of adjusting of dosage and a good 6 months to reach theraputic levels. Sorry that symptoms are returning.
 
Same here many months I would say at leasy 4-5 to reach therapeutic levels.
DS stayed on EEN the entire 9 weeks before we added pred in until 6-mp could take over .
After 8 months it was clear for DS it was not enough .
 
My son was on 6MP for 6 months, he was taking pentasa with it. My son had more minor flares when he was on it then when he wasn't taking it so his GI did a blood test to see how much of the medicine was in his body and the results came back with low numbers. His GI then decided the 6MP wasn't going to work for my son so they both talked about what we should do next and my son wanted to try Remicade so that's where we are at now. I wish we would have started with remicade a lot sooner. He has gained almost 10 lbs since he started it and has more energy and eats a lot more. I'm sorry you have to go through this but we all know how you feel and it's hard.
 
My daughter is on the sister drug. It took many months for it to work on it own and three courses of pred. Once you have the results for the drug levels you will know more. We increase the dose five times.
 
Is a fecal cal test result of 177 really high? I know 5o and below is normal. Still waiting for 6mp results and banging my head against a wall.:ybatty:
 
No, 177 isn't really high, although as you said it should ideally be below 50. My son had a result of around 1600 when diagnosed.
 
DS typically has in the 80's but 50 is only for normal kids - most IBD docs like it to be below 300. DS had one about 234 a few months after a mini flare- Gi stated flares are in the thousands BTW.
 
Yes, this is first fecal cal test. He has been off Prednisone since February 14th. Hoping 6 mp test comes back tomorrow.
 
Ours states anything under 160 is normal, did they give you a range? Jack's baseline "normal" is 90 so when it came back at 295 and then 390 we adjusted meds. So sometimes it just depends on the child and seeing a pattern. All Jack's bloods come back as normal but with the slightly elevated FC along with lack of growth, painted a picture of ongoing disease activity that was just simmering.
Did they give you a time frame to do another? We do them about every 3-6 months at this point.
 
So we got the 6mp bloodwork back today...and here are the numbers based on 50mg of 6mp.

6-TGN 226
6-MMPN 4500

GI sticking with plan of 75mg on alternating days with 50mg on the other day. This is all so new to us...doesn't the 6-MMPN seem borderline high? Will the increased dosage be too much?
 
It can take a while to get those numbers in the right range. My son started out much the same with high 6-mmp and low 6-TGN. Over 2 years later the 6-TGN is still below the therapeutic range but he is doing so well that the GI feels it is the right level for him.

The GI may cut the dose and add Allipurinol, which will help lower those 6-mmp levels too. We did that for about a year as well. It can take a while to get the adjustment right, but once you do, it is totally worth the wait!
 
I think the 6TGN is low, not sure on the other one - we only seem to get the TGN checked. Andrew's is around 500 which I think is slightly high.
 
My son started on 6mp, his first lot of blood tests came back with the two levels not quite right, it took a few months to get things at the right level, but we had to add Allipurinol also to help. Now my son takes 50mg Allipurinol a day and alternates between 1/4 and 1/2 tablet of 6mp a day.
 
So the most recent 6MP blood test came back and the results seem better...

6-TGN 316
6-MMPN 5200

Rest of blood panel shows liver functions within normal range and SED rate and CRP are down from last month. A few minor symptoms still are occurring, but overall he is feeling pretty good.

Is the 6-TGN level still a little on the low side?
 
To me the levels are in range. Is your son's crohn disease well controlled?
 
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We were starting to think his disease might be under control but we ended up at the eye doctor with a case of iritis. Also, either he bit the side of his mouth, or he has 2 new canker sores. GI doctor wants to see him on Monday and we were advised that potential other therapies may be discussed. :ybatty:
 
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Did you get a chance to read the part of the article link that My Little Penguin sent about boosting the therapeutic part of 6-mp by cutting the dose and adding allopurinol? Although it did not work for us, that has worked quite well for some. At least worth the discussion with GI as you consider options??

Sorry to hear about the iritis. :(

J.
 
Discouraging visit with our GI today. She is not happy with the general bloodwork, he is not in remission, we have simmering disease. On the positive side he grew 1/4 inch in 6 weeks and put on a few more lbs, he actually feels decent and is eating well.

We are giving another attempt at the 6mp by raising to 62.5 mg alternating with 75 mg. I asked about the Allopurinol and she felt it was not necessary since his overall liver function looks fine and he is still below 5700.

She gives the 6mp a 50/50 shot of putting him into remission, but wants to give it more time before moving on to Remnicade.

Feeling discouraged:(
 
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Our GI in Michigan put my son on Allopurinol when his liver enzymes briefly went above 5700. He was on it for about a year and then we moved and our new GI said his levels weren't necessarily high enough for the switch and removed the allopurinol and upped his 6mp dose. It took a couple of years on 6mp for my son to reach full and complete remission. He was doing much better than at diagnosis but fecal cal was 586 and he was struggling to gain weight. Then one day everything just fell into place and he had a normal fecal cal and the weight started to come on without much effort.

Try not to be discouraged, healing can take a while. We saw slow improvement, two steps forward, one step back sort of thing. We were glad we were patient, as our GI recommended. It is a fine line to know when to move on to remicade. We trusted our GI because we know he has seen so many cases.

Hoping you see some improvement really soon!! ((((Hugs))))
 
DustyKat said:
I think the key words there myboy are starting building in his system, it takes about 3 months to become fully therapeutic. Imuran/6MP is normally started at the same time as Prednisone because of this build up period but you will find that many people do finish the Pred at about the 6-8 week mark. The 6MP will be in his system by then and if the Pred has done its job then the 6MP should start to take over at about that point. I would keep a close watch on his symptoms and overall well being and if he is improving and there are no setbacks as he tapers he should be okay. If you have any concerns then stay in close contact with the GI.

For us bloods were done weekly for at least the first 4 weeks. GI’s will differ in their monitoring regimen but this is the one that I personally prefer:

View attachment 2503

Good luck, I hope all goes smoothly! :ghug:

Dusty. xxx
Click to expand...

DustyKat,
Thank you so much for posting this info. My daughter has been on Purinethol for about four weeks now and we haven't had a blood test yet. I knew her blood would have to be carefully monitored, but not this frequent. I contacted her GI today and he ordered her labs.

I'm scratching my head??? He said, the plan was to do her labs in twelve days the day of her first Remicade infusion. My husband and I are still not if we'll do Remicade.

Thanks again.
~J

Thanks again!
 
Emily's mom-
I know remicade can be very scary especially to give to your own child.
I also know I felt physically ill the days my son had his first few infusions due to worry- what if this what if that .....
Doctors typically do Not recommend remicade for younger kids unless the risk of inter treated disease outweighs the small risk associated with biologics.
My kiddo has been on both remicade and humira plus all the other "easier" meds- no med is easy to give a child especially these. I can say remicade have me my kid back.
He grew . He was not in pain. He was in school and playing sports competitvely .
His scans were good and labs were great.
This was not possible without the scary biologics.

When considering risks look up morbidity rates for kids
Death for kids under 14
Car 1 in 250
Drowning 1 in 1000
T cell lymphoma without drugs or Ibd 2 in 10000.
T cell lymphoma risk with remicade +immunosuppressant 4 in 10000.

So there are risks
I take many with my kids everyday without thinking about it.
But seeing your child healthy and knowing that biologics are the one drug that has been shown to change the severe course of the pediatric disease is priceless .

Hugs .....
None of this is easy no matter what the drug or diet tried.
 
6mp and Pentasa are just not enough... Seems we may be going down the Remicade/6mp road after an increased SED rate, sporadic abdominal pain, occasional bloody stools and iritis, all symptoms of continued simmering disease. Our GI has a MRE, endoscopy and colonoscopy all scheduled in the next week.

Serious concerns in doing a combo of 6mp and Remicade for my 12 year old son. I know the risk is small, but it is still there for T-cell Lymphoma. Pondering this risk is keeping me up at night!

If he is currently on 6mp can he switch to a methotrexate/Remicade combo which I have read may be better for teen boys?
 
I probably won't explain this as well as MLP or our GI explained it to me, but the risk of lymphoma is there no matter when you take the two drugs, whether together or not. So, if he's on 6MP now and you later either add Remicade or simply do Remicade alone, because he's already taken 6MP, the risk is there. Does that make sense?

I had the same worries (tho my son was on Azathioprine), but the Aza was acting more like a placebo than anything for him so we switched to Remicade and it has been wonderful for him. His GI did keep him on the Aza for a two week taper concurrently with his Remicade loading doses.

There are other studies that show the risk isn't just limited to teen boys either. I know the Remicade black box label specifically says teen boys, but there are a couple of studies that indicate it might not be specific to them alone.

Good luck next week. I hope you get some clear direction as what to do next.
 
We stopped the aza at the first infusion but he had only been on it a couple of months this time. but I agree with Mehita it's not necessarily the combo at the same time but having had taken it at any point.
I was in your boat I was terrified to give remicade to my son but it has been the best thing for him so far, weight improvement was immediate something we struggled with for the last 4 years. He has grown an inch in the 4 months since and energy and just over all well being has been fantastic.
 
Ditto it is having had an immunosuppressant any kind 6-mp or Mtx plus later using a biologic any kind - the two do not need to be together at all.
6-mp is implicated more since it's the go to immunosuppresant for crohn's , only a few go on Mtx. But now that more have been on both the risk is there as is it for any one young old boy girl etc...
Check the pediatric research section top of the page
I posted more than a few papers on it.

DS loved remicade fwiw .
 
Heard from our doctor yesterday that she wants to start Remicade and to also keep on the 6mp. I asked how long on the combo and she said indefinitely. I understand the 6mp will assist in allowing his body not to develop the antibodies to the Remicade, but concerned this is a rather aggressive approach. How many out there have children on a combo of Remicade and 6mp?
 
My daughter has been on Remicade and methotrexate, but not Remicade and 6MP. The combination worked wonders for her, it was the only time she really felt "normal" (we gave up mtx because it made her really sick but most kids tolerate it just fine).
I'm sure parents with kids on both 6MP and Remicade will chime in soon.
Good luck!
 
Same here my son was on remicade and methotrexate, with no side effects. He is still on methotrexate he has just switched from oral form to injection. He had disease progression so we are waiting out some testing, a run of EN before deciding our next steps.

I'm sure some will be by that have been on the 6mp/remi combo.
 
DS did remicade plus 5asa
Only because 6-mp went to his liver
And Mtx gave him possible flu like symptoms .
 

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