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Crohn's Disease Forum » Treatment » Need Advices and helps


08-06-2017, 01:14 PM   #1
richard1353
 
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Need Advices and helps

Hello, I am a father of 11 year-old boy with CD in China. He was diagnosed with CD this week. He had a little stomach pain and diarrheas for 3~5 times per day. Sometimes, there are visible blood after his bowel motions. Now he had inflamed and ulcers in parts of colon. The scores of CDEIS is 16.8.
My question is we can first use Humira or Entyvios, then we take the medicine like Imuran? Or we will take the Humira or Entyvious if the conditions become more serious.
I am new person here, but I need your previous treatment plan, especially young child.What choices do I have?
Thanks a lot and hope everybody happy!
08-06-2017, 03:09 PM   #2
ronroush7
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Welcome. I am going to tag Clash, Maya 142, my little penguin
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
08-06-2017, 03:25 PM   #3
my little penguin
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There is a parents of kids section
You will get lots of responses there

http://www.crohnsforum.com/forumdisplay.php?f=49


Ds has been on humira for plus methotrexate for over 5 years
He was on remicade prior to that
He will be switching to Stelera soon

Ds is 13 and was dx at age 7

Good luck


Tagging
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Farmwife
Jmrogers
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DS - -Crohn's -Stelara
08-06-2017, 04:20 PM   #4
Maya142
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Hi and welcome!

It depends - what does your doctor recommend? Many GIs are now recommending using biologics earlier to prevent complications like strictures, abscesses, delayed growth etc. So many of them are using biologics when a child is diagnosed, instead of waiting.

My daughter has been on both Humira and Entyvio. She did better on Humira, but it's very individual. She has also been on Imuran. It really depends on what your doctor recommends.

My daughter is currently on a different biologic, Cimzia, and doing well with that. For her, Imuran by itself did not work for her Crohn's - her scopes still showed inflammation.

But it depends on the kiddo - it's very individual.
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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
08-06-2017, 10:05 PM   #5
Farmwife
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Hi and welcome.

My daughter's GI put her on Remicade and Imran.
Drugs like Imran, mtx plus more in this group help to stop the build up of antibodies to drugs like humira and Remicade.
At least this is why her doc wants her on both.
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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
08-07-2017, 02:32 AM   #6
richard1353
 
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Thank you for so many parentsí warmly reply. Because we are in China,Remicade was approved to treat the IBD disease two years ago and Humira just are in clinical testing. We can't buy Entyvio in China. My son need be check up small intestine with CT scanning tomorrow. Our doctor has no any advice for us for incomplete inspection. Like Farmwife said, Remicade and Imran may be feasibility treatment plan for my son. If our doctor give our treatment suggestions, I need you talk about these and give me your idea.
Thanks again!

Last edited by richard1353; 08-07-2017 at 03:01 AM.
08-07-2017, 02:48 AM   #7
richard1353
 
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Hi and welcome.

My daughter's GI put her on Remicade and Imran.
Drugs like Imran, mtx plus more in this group help to stop the build up of antibodies to drugs like humira and Remicade.
At least this is why her doc wants her on both.
Maybe I misunderstand your meaning. In your opinion, two drugs of Remicade and Imran are mutual contradiction. So her doc used the Remicade first time that can control the condition of ulcer and inflammationbuild up of antibodies】, after that, her doc taked drugs of Imranto to maintain in remissionstop the build up of antibodies 】after finishing the course of Remicade treatment.
Are my understandings correctly? Of course, I will pass on your suggestions to our doctor for take Remicade and Imran in different two stages.
08-07-2017, 02:58 AM   #8
richard1353
 
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Welcome. I am going to tag Clash, Maya 142, my little penguin
I am sorry that I can't understand your meaning. Maya 142? Do you give me some advice for treatment plan? Thanks lot!
08-07-2017, 03:00 AM   #9
richard1353
 
Join Date: Aug 2017

My Support Groups:
There is a parents of kids section
You will get lots of responses there

http://www.crohnsforum.com/forumdisplay.php?f=49


Ds has been on humira for plus methotrexate for over 5 years
He was on remicade prior to that
He will be switching to Stelera soon

Ds is 13 and was dx at age 7

Good luck


Tagging
Pilgrim
Farmwife
Jmrogers

I will put the treatment plan from our doctor in two sub forums. Thanks lot.
08-07-2017, 07:11 AM   #10
ronroush7
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I am sorry that I can't understand your meaning. Maya 142? Do you give me some advice for treatment plan? Thanks lot!
I was welcoming you to the forum and calling on people that I thought could help.
08-07-2017, 07:46 AM   #11
my little penguin
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Sorry for the confusion
Normally
You take remicade every 8 weeks for the rest of the child's life as long as the drug works
Most take imuran or methotrexate with remicade (at the same time ) to prevent them remicade from stopping to work (because of antibodies )

So simply put a normal treatment plan for kids
Take remicade and imuran together for the rest of the child's life


For my child he takes
Humira and methotrexate together (at the same time )
08-07-2017, 07:48 AM   #12
my little penguin
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You don't stop remicade
It needs to be taken every 8 weeks to maintain remission
If you stop remicade then her next flare
You will not be able to use remicade agai.
08-07-2017, 09:07 AM   #13
richard1353
 
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You don't stop remicade
It needs to be taken every 8 weeks to maintain remission
If you stop remicade then her next flare
You will not be able to use remicade agai.
Thank your timely reply! It's nice to meet you! You must be my little penguin that ronroush7 thought you could help me.
I know what your meaning. The Remicade must be taken every two months( 8 weeks) so that I can't afford that. As you known, the price of a bottle of Remicade for weight 40kg is 1800 dollars in China. There are many of oridinary families that can't provide the high fee.
If the period of two months is changed to six months, I think that this treatment plan become feasibile.
So, are there other advices? Thanks again!
08-07-2017, 09:16 AM   #14
my little penguin
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Remicade can't be taken every 6 months
The child body will start to fight the medicine-possible severe life threatening reaction to the medicine -if you go longer than every 8 weeks (2 months) between doses of remicade
Is there insurance or drug company help to help pay for the remicade ???

Remicade just won't work if taken every 6 months


Have they talked about een (exclusive enteral nutrition)?
EEN is formula only -no solid food-or only 20% of the calories from solids the rest from formula -(such as neocate jr /peptamen jr /pediasure)?


It can be used as a treatment similar to steriods
But better for growth
No side effects
And much cheaper than remicade
08-07-2017, 03:23 PM   #15
Maya142
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Remicade (unfortunately) cannot be given every six months. I know in certain countries, like India for example, biologics are given as a one time treatment or the interval is spaced out. It is done to save money, but it tends not to work very well unfortunately.

If a consistent level of the biologic (such as Remicade, or Entyvio, or Humira) is not kept up in the body, then the body tends to develop antibodies to it. It's more likely with certain biologics - especially Remicade, since it's made from mouse protein.

If you space Remicade infusions out, your child could develop antibodies to it. If your son develop antibodies, an allergic reaction to the drug is much more likely. An allergic reaction could be life threatening.

Generally, Remicade is given every 8 weeks, but often kids needs it more frequently than that because they metabolize the drug quickly - many need it every 4 or 6 weeks.

I would check with the drug company to see if they can provide assistance to help pay for Remicade.

Alternatively, I would look drugs like Imuran or Methotrexate - they're not biologics, so are MUCH cheaper. They are immunomodulators. They can be used in addition to biologics or by themselves.

Some kids do great on just immunomodulators while others need biologics too. It really depends and it's often just trial and error, figuring out what works for your child.
08-07-2017, 03:37 PM   #16
richard1353
 
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Thanks for every body! My son get up now and drink some milk powder. He will be arranged to scan his small intestine using MRI in this afternoon. But he be required to eat nothing in following eight hours before finishing check.
If I have any inspection results. I will sorry to bother you all.
08-07-2017, 03:47 PM   #17
richard1353
 
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Remicade (unfortunately) cannot be given every six months. I know in certain countries, like India for example, biologics are given as a one time treatment or the interval is spaced out. It is done to save money, but it tends not to work very well unfortunately.

If a consistent level of the biologic (such as Remicade, or Entyvio, or Humira) is not kept up in the body, then the body tends to develop antibodies to it. It's more likely with certain biologics - especially Remicade, since it's made from mouse protein.

If you space Remicade infusions out, your child could develop antibodies to it. If your son develop antibodies, an allergic reaction to the drug is much more likely. An allergic reaction could be life threatening.

Generally, Remicade is given every 8 weeks, but often kids needs it more frequently than that because they metabolize the drug quickly - many need it every 4 or 6 weeks.

I would check with the drug company to see if they can provide assistance to help pay for Remicade.

Alternatively, I would look drugs like Imuran or Methotrexate - they're not biologics, so are MUCH cheaper. They are immunomodulators. They can be used in addition to biologics or by themselves.

Some kids do great on just immunomodulators while others need biologics too. It really depends and it's often just trial and error, figuring out what works for your child.
Thank you very much and your warmly help to contact the drug company for supposing ordinary Chinese family.
Now I understand the differences of Remicade and Imuran. Many advices are used Remicade and Imuran together. Is your meaning only with Imuran or MTX that work well for CD?
08-07-2017, 03:53 PM   #18
Maya142
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For some kids, yes.

It really depends on the child and it's trial and error figuring out what works. There are kids who do well on just Methotrexate for example, and there are others that need Remicade + Methotrexate.

The biologics normally used here are: Remicade, Humira, Entyvio, Stelara, Cimzia and possibly Simponi.

The immunomodulators used here are: Imuran/6MP (which are sister drugs) or Methotrexate.

They are just two different classes of medication. Biologics tend to be used for severe disease and are very effective, but are also very expensive.

Some kids need just an immunomodulator to control the disease. Other kids need just a biologic to control the disease. Some kids need both an immunomodulator and a biologic.
08-07-2017, 04:08 PM   #19
richard1353
 
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For some kids, yes.

It really depends on the child and it's trial and error figuring out what works. There are kids who do well on just Methotrexate for example, and there are others that need Remicade + Methotrexate.

The biologics normally used here are: Remicade, Humira, Entyvio, Stelara, Cimzia and possibly Simponi.

The immunomodulators used here are: Imuran/6MP (which are sister drugs) or Methotrexate.

They are just two different classes of medication. Biologics tend to be used for severe disease and are very effective, but are also very expensive.

Some kids need just an immunomodulator to control the disease. Other kids need just a biologic to control the disease. Some kids need both an immunomodulator and a biologic.
Very professional! There are three choices in your last paragraph. If our doctor gives us the same three options, How can I select? First Imuran(if no use), then Imuran+ MTX ,last Imuran+Remicade, or First MTX(if no use), then Imuran+ MTX ,last Imuran+Remicade? As you known, many persons took the Remicade four times for the whole course and didn't continue use this drug in next five years in China. The frequency of every 8 weeks for Remicade can't image in China. Many people said that the Remicade has the side effects that cause potential and uncontrolled risks than immunomodulators. What do you think about it?
08-07-2017, 04:16 PM   #20
Maya142
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This is a great presentation about the risks and benefits of IBD treatments: http://programs.rmei.com/CCFA139VL/

I honestly cannot advise you. I'm a mom, not a doctor . You need to go on what your doctor says.

I can tell you that here, in the US, they prefer to use MTX over Imuran, especially for teenage/preteen boys. That's because there is a VERY rare cancer associated with Imuran use that was found mostly in teenage/young adult boys. It's very, VERY rare, but pediatric GIs here tend to try and avoid Imuran if possible.

Also, generally Imuran and Methotrexate are not used at the same time because both can be hard on the liver. It's usually either MTX or Imuran.

You will need to decide with your doctor what is the best choice for your son. I would do some research, and figure out the finances issue.

I can't tell you anything about using Remicade only a few times a year because that is not done here. Here, once you are on it, you are on it till it stops working.

Biologics are not more risky than immunomodulators. They both come with an increased infection risk, but in general, our doctors have told us that biologics are safe drugs. Imuran comes with a slightly higher risk of skin cancer. With biologics, you need to be very careful about TB - he will need to be screened before you start and while he is on a biologic.
08-07-2017, 04:23 PM   #21
richard1353
 
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This is a great presentation about the risks and benefits of IBD treatments: http://programs.rmei.com/CCFA139VL/

I honestly cannot advise you. I'm a mom, not a doctor . You need to go on what your doctor says.

I can tell you that here, in the US, they prefer to use MTX over Imuran, especially for teenage/preteen boys. That's because there is a VERY rare cancer associated with Imuran use that was found mostly in teenage/young adult boys. It's very, VERY rare, but pediatric GIs here tend to try and avoid Imuran if possible.

Also, generally Imuran and Methotrexate are not used at the same time because both can be hard on the liver. It's usually either MTX or Imuran.

You will need to decide with your doctor what is the best choice for your son. I would do some research, and figure out the finances issue.

I can't tell you anything about using Remicade only a few times a year because that is not done here. Here, once you are on it, you are on it till it stops working.

Biologics are not more risky than immunomodulators. They both come with an increased infection risk, but in general, our doctors have told us that biologics are safe drugs. Imuran comes with a slightly higher risk of skin cancer. With biologics, you need to be very careful about TB - he will need to be screened before you start and while he is on a biologic.
Simple but very useful! Thank you very much! This is a very good communicational forum because there are many people like as your warmly and timely answers and helps! Thanks again!
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