03-20-2014, 08:18 AM   #31
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Sascot's Avatar
Join Date: Aug 2011
Location: Falkirk, United Kingdom
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.
03-20-2014, 06:01 PM   #32
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farmerswifey's Avatar
Join Date: Aug 2012
Location: Queensland, Australia
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.
Mum to Mr C aged 11

Crohn's Disease
Diagnosed 21 Aug 2012
EEN 27 Aug 2012

Remission 17 Mar 2014

Currently healthy, playing football, obsessed with Lego and Star Wars!

Knowledge is Power
04-17-2014, 07:28 AM   #33
myboy12's Avatar
Join Date: Jan 2014
Location: Chicago, Illinois
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?
Son diagnosed at age 12, December 2014

Current meds: Remicade every 8 weeks (May 2014)
Past meds: Prednisone, 6MP and 3000 mg Pentasa
04-18-2014, 01:39 AM   #34
Catherine's Avatar
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia
To me the levels are in range. Is your son's crohn disease well controlled?
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)

Last edited by Catherine; 04-20-2014 at 04:57 AM.
04-18-2014, 07:11 AM   #35
my little penguin
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Join Date: Apr 2012

The 6-mmpn is still ok but above 5700 liver issues can start.
Read above link on different ways to handle that if its a problem .
DS - -Crohn's -Stelara -mtx
04-19-2014, 07:36 AM   #36
myboy12's Avatar
Join Date: Jan 2014
Location: Chicago, Illinois
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.

Last edited by myboy12; 04-19-2014 at 11:20 PM.
04-19-2014, 07:42 AM   #37
AZMOM's Avatar
Join Date: Nov 2010
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.


Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
04-21-2014, 09:41 PM   #38
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Join Date: Jan 2014
Location: Chicago, Illinois
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

Last edited by myboy12; 04-21-2014 at 10:10 PM.
04-22-2014, 06:29 AM   #39
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Johnnysmom's Avatar
Join Date: Oct 2011
Location: Cincinnati, Ohio
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))))
Mom of Johnny
Dx Oct 11 2011 Crohns disease
Prednisone done 12/30/11
6mp 50mg every day
Allopurinol 50mg -discontinued per new G.I. on 11/01/12
Multi Vitamin
Vitamin D3 1000mg
04-22-2014, 04:16 PM   #40
Emily's mom
Emily's mom's Avatar
Join Date: Mar 2014
Location: Pawleys Island, SC
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. GIís will differ in their monitoring regimen but this is the one that I personally prefer:

Attachment 2503

Good luck, I hope all goes smoothly!

Dusty. xxx
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.

Thanks again!
04-22-2014, 04:37 PM   #41
my little penguin
Forum Monitor
Join Date: Apr 2012
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.
04-30-2014, 08:27 PM   #42
myboy12's Avatar
Join Date: Jan 2014
Location: Chicago, Illinois
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?
04-30-2014, 08:43 PM   #43
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Mehita's Avatar
Join Date: Nov 2011
Location: Minnesota
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.
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
04-30-2014, 08:58 PM   #44
Jmrogers4's Avatar
Join Date: Jun 2012
Location: Boise, Idaho
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.

Mom to Jack (18) dx Crohn's 2/2010
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
04-30-2014, 09:11 PM   #45
my little penguin
Forum Monitor
Join Date: Apr 2012
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 .
05-03-2014, 01:36 PM   #46
myboy12's Avatar
Join Date: Jan 2014
Location: Chicago, Illinois
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?
05-03-2014, 02:53 PM   #47
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Maya142's Avatar
Join Date: Jul 2013
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!
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
05-03-2014, 02:57 PM   #48
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Clash's Avatar
Join Date: Apr 2012
Location: Georgia
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.
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara

Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
05-03-2014, 03:49 PM   #49
my little penguin
Forum Monitor
Join Date: Apr 2012
DS did remicade plus 5asa
Only because 6-mp went to his liver
And Mtx gave him possible flu like symptoms .
05-04-2014, 08:25 AM   #50
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Sascot's Avatar
Join Date: Aug 2011
Location: Falkirk, United Kingdom
No experience, just wanted to wish you luck

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