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Crohn's Disease Forum » Parents of Kids with IBD » Remicadee and 6mp for 7-year old?


09-01-2012, 11:00 AM   #1
Jengo
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Remicadee and 6mp for 7-year old?

Hello!

My son Jack has been on Pred (down to 3ML's), 6MP (2.5ML) and Remicadee (every 6-8 weeks). We're very concerned about the side effects of being on Rem and 6mp together. To me it looks like our options are being on both together or choosing one to be his sole drug. He's doing great but we're very worried about the increased risk of cancer.

We have a meeting in a few weeks to discuss his plan...do you have any advice or have any questions that we should be asking? Seems like every doc has a different opinion...seems very subjective.

Eric
09-01-2012, 11:38 AM   #2
Malgrave
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Hi Jengo,

Our 5 year old was on Remicade and Imuran (azathpriorine) at the same time for 7 months. This combination is also quite risky, but the doctors said that Remicade must be started together with Imuran and after 6 months remission, the Imuran was planned to be dropped out. In our case Remicade was not working, so he has only Imuran but the doctors propose Humira asap together with Imuran. We are very worried and do not know what to do....
__________________
*Son (9 years) with severe Crohn's diagnosed at the age of 26 months, currently UC or Crohn's colitis
*Current mediacation: IVIG, Humira, Azathpriorine, Eusaprim
(Tested but failed: Modulen IBD, Neocate advance, Budenofalk, Remicade, Azathpriorine, MTX, Jerusalem cocktail, cycklosporine, pentasa,...)
09-01-2012, 01:12 PM   #3
Thermo
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I will be honest as there is no point of hiding the facts. Hepatosplenic T-cell lymphoma has been linked to Imuran (6MP) and Humira mostly in young male patients. While the median life expectancy with this cancer has raised the last couple of years from 6 months to 2 years it is not curable and often results in death.

However this is a very rare disease to catch, of all the juvenile patients who ended up developing a malignancies half of them developed non-Hodgkins Lymphoma which is very curable, the other half developed random cancers (Including Hepatosplenic T-cell) but the majority of them were Lymphomas or Leukemia. The median average of catching a malignancies was 30 months.

Due to your Crohns you have a 20 times greater risk of cancer versus the general population however this is only a 1.2% increased risk. The increased risk of lymphoma and leukemia while taking Humira is 3 times greater versus the general population which is .1% or .6% depending on which study you look at. You stand a far bigger chance of getting cancer just because you have Crohns but the risk is still small. You stand a higher risk of dying from a car accident (1.72%) than Humira

Biologics bind to Tumor necrosis factor Alpha which prevent it from binding to Tumor necrosis factor receptors TNF among one of its responsibilities is apoptotic programmed cell death which is responsible for the death of 50-70 billion irregular cells in your body per day. When you remove this capability of your body you have an increased number of irregular 'potential' cancerous cells in your body. Without an effective backup plan this is your increased risk of cancer. If you identify how you can balance out taking a biologic or 6mp with cleansing your body and free radicals you effectively reduce your risks to zero even while having Crohns and taking Humira.

I encourage you to look through the treatment section of the website as some of the parents have gotten success with LDN treatments and other forms of treatments.
__________________
Diagnosed-1992 (Age 8) Regional Enteritis 555.0

Meds - Humira, B-12 Injections, Vitamin D, Iron, VSL#3

Surgery - Open Ileocolic Resection July 24, 2012 (44cm removed 17 inches including appendix)

My Advice: Find a good GI, Primary Doctor, Optician, and spouse and stick with them, don't be afraid of the Biologics and 6 MP's if you hit the disease hard at diagnosis you fight off the natural progression and have a better quality of life.

http://www.youtube.com/watch?v=PC2VyIxiWmk
09-01-2012, 06:11 PM   #4
Patricia56
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Welcome to the Forum Jengo. Sorry you had to be here but we are glad to welcome you and hope you find the support you need.

It is so wonderful to hear that your son is doing well on his present medications. It can be very hard to find the right combination to get remission in young children as they often have severe disease.

Our son was 10 when he was diagnosed. We had to go to Humira and 6-MP about a year after his diagnosis to get him into remission. About a year after he started Humira and he had gotten into remission we switched to Methotrexate instead of 6-MP.

My son stayed on Humira for about 3 years altogether and then stopped at his request. He had been in solid remission for more than 2 years. He has continued on MTX since he stopped Humira over 2 years ago.

In the past 3 months he has shown signs of a small flare and we have increased his MTX. We will be repeating his MRE in October to see if this has been enough to knock down the flare of if we will need to look at adding a biologic back in.

It was a very difficult choice to start biologics because of our fears about cancer and long term side effects. But I feel sure that he would not have gotten in to remission otherwise.

And we knew the costs and risks of not getting him into remission. Continuing damage to his intestines, worsening strictures until he had to have surgery, worsening perianal disease. Then there's the lost time in school (half of 4th grade, most of 5th grade), poor physical development of his body - his brain, bones and organs, lost chances to develop socially and emotionally.

Partial remission is OK if that's as good as it gets. But full remission is really what you need if you want their body to heal, to grow, to be ready when the next flare hits. And our son could not get into full remission without a biologic. You can read our story or check my previous posts but we had tried many treatments including two rounds of exclusive enteral nutrition. This was the only thing that worked.

And it has worked very well.

Our son had an MRE in June when he started having signs of flaring. His previous SBFT had shown multiple strictures, the longest about 6 inches. The MRE in June showed NONE - not one single stricture was still there. That is because he got into solid remission and stayed in remission long enough for his gut to truly heal - to achieve mucosal healing. And that's why I believe he didn't immediately flare when he stopped the Humira. Instead he stayed in remission for another two years.

So my advice to you is to stick with what's working for now. Maybe after he's been in solid remission for a couple years you can talk about dropping one of the meds like we did.

But I also think you need do what is best for your family and your child - which may be something different than what was best for our family and our child.

Is your son being treated at a Pediatric IBD Center? I see you are in Mass and there are several top notch programs in your area including CHOP.

I always suggest parents get a 2nd opinion. Doctors who have direct experience treating thousands of kids with IBD have the expertise to answer your questions and to give you as good an assessment of the risks as can be done. CHOP, for example, sees about 4,000 IBD patients a year. If anyone knows what is happening when kids use these meds, they do.

It may not be possible to know how big a risk it is to do just one med compared to a combination of meds. In each case the risks of cancer, for example, are very, very tiny in the adult population where there are much larger numbers of people using these meds. The number of children using the meds is much smaller making it even harder to know for sure whether it is riskier (and how much riskier).

Here's a link to a recent thread that includes a discussion of this issue on the Parent's Forum and it includes a lot of information on HSTCL, the cancer that Thermo referred to in her post.

http://www.crohnsforum.com/showthrea...ighlight=hstcl

The most recent data published by the FDA listed 20 cases of HSTCL (the cancer Thermo referred to) associated with remicade. Of those 20 adolescents and young adults, 18 had taken or were also taking azathioprine/mercaptorpurine. To give this number context, it may be helpful for you to know that the estimated number of pediatric IBD cases in the US is as high as 500,000.

You may find this helpful when you are talking to the doctors about their recommendations.

B - what are the Benefits?

R - what are the Risks?

A - what are the Alternatives?

N - what happens if we do Nothing?

D - Decision

Keep asking questions. You are your child's best advocate and you are doing a great job.
__________________
Badger, 18, CD, overall great guy
Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.

Last edited by Patricia56; 09-01-2012 at 11:53 PM.
09-02-2012, 02:01 PM   #5
Jengo
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Thanks for all the great information...my wife and I will absorb it all and give a lot of thought to the options you've all noted.

Our thoughts,
Eric
09-02-2012, 02:10 PM   #6
Thermo
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The cancer that Thermo referred to in her post.
Did I just get called a woman!?
09-02-2012, 03:16 PM   #7
Farmwife
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Thermo it could be the cat in a planter.It's so cute perhaps he thought you were a women.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
09-02-2012, 07:00 PM   #8
Keepingfaith
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I just wanted to say that my friend was on the combo at 12 years old(he is a male & he was on remicade alone 2 years prior) and he was then able to grow 4 inches and gain 20 + pounds! His mother was very concerned about the combo but once she saw how much he grew and how great he was feeling, she felt so bad. Her son was suffering for so long & if she would have put him on the combo sooner he would have less misery in his life.

Yes it's a risk but the risk of uncontrolled disease is GREATER! I know of 4 people who have died of uncontrolled Crohn's. I personally know ZERO people who have died of that kind of Lymphoma. Also, that Lymphoma is supposed to be 'easier' to treat. If you were to drop one of the medications you would kick yourself if he ended up getting sick again.

I personally know a boy who was on 6MP since the age of 3-12 and he got cancer at age 12. Just from the 6MP alone. After he finished his cancer treatments(that keep Crohn's at bay)he restarted his Crohn's medications(Humira or Remicade I think).

Life's all about risks but I'm just offering my 2 Cents.
__________________
Current medication:
Entyvio
Imuran
Entyvio
Prilosec
Protonix
Seasonique
Noritriptyline
Steroid suppositories
Canasa suppositories

Diet: Feeding via J-tube

DX: Crohn's Disease, Juvenile Rheumatoid Arthritis, Endometriosis, Gastroparesis

Previous Medications:
Remicade- Drug Induced Lupus, Humira, Prednisone,
Entocort, 6MP, Methorexate, Amitriptyline, Asacol, Flagyl, Apriso, Cimzia, Cipro, Sulfasalazine etc. You name it, I've tried it.
09-02-2012, 07:57 PM   #9
Tenacity
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How long has your son been on the combo of 6MP and Remicade?

I personally feel, if it ain't broke don't fix it. Wait until he has reached mucosal healing before considering taking him off the 6MP. When that time comes, think about starting him on LDN a couple of months before you start the 6 MP taper.

In the "olden" days, they used to treat symptoms, but doctors are now being told to treat to achieve mucosal healing as that lessens the chance of complications such as abscesses, strictures, fistulas etc.

So, I would continue with the current treatment plan until he achieves mucosal healing as evidenced by colonoscopy, and then start him on LDN to run concurrently for a few months before coming off the 6MP.

The reason why I chose LDN is because it is such a harmless drug with almost no side effects other than a bit of insomnia in the beginning. The doses we take for crohn's ( 3- 4.5 mg) as opposed to the regular 50mg dosage for other conditions, is so minimal.

Here is a study published last year about LDN:

http://www.posterwall.com/blog.php?b=2215

That is just my opinion - I hope it helps you in your decision.
09-03-2012, 01:39 AM   #10
Patricia56
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Perhaps some misguided people might conclude that the use of the word "her" confers womanhood on the writer whose avatar is a cat in a pot.



And some might feel that women are superior creatures, intellectually, physically and emotionally. Those same people might have good reason to feel that anyone would be honored to be thought of as belonging to that distinguished sisterhood.



Well, it seems that I have erred. I blame it all on the cat. I do beg your pardon and promise to never refer to you in that way again.


Last edited by Patricia56; 09-03-2012 at 11:35 PM.
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