My son is starting 6MP

hi all
I am new to the group.. I have a 9 year old son that has been diagnosed with crohns for 2 years and just got changed off apriso yesterday to 6MP because we cant keep him off budesonide and he keeps having flares off budesonide.. I am worried about this medication and any side effects.. any advise would be great
thanks

Welcome
We have a great parents group.
Here

Come over check us out
Lots of btdt parent advice
http://www.crohnsforum.com/forumdisplay.php?f=49

DS was dx at age 7 as well
He is 11 almost 12 now
It's not surprising aspiro did little for your son.
5-Asa are not approved as a monotgerapy for crohns because they don't work that well for crohns at all .
They are great for UC since it only effects the top layer.
I am surprised they let him stay on steroids that long
They have horrible known side effects on kids
6-mp is an immunosuppressants
Most Gi are no longer using it in children since it has been proven ( recently ) to significantly increase the risk of lymphoma .
My son was on it for 8 months ( before the recent studies were published )
Most Gi are now switching to mtx or biologics or both .
These do not have the same lymphoma risk.
The risk is even higher for young males.
Are you at a larger teaching hospital ?
The top three in the U.S. For pediatric ibd
Are children of Philadelphia
Children of Pittsburgh
And
Boston children's
Can you get a second opinion ?
Even if it's just a record review ???

Tagging
Clash
Jmrogers
Crohnsinct
Maya142

i am in Omaha Nebraska and not at a large teaching hospital however I will do some more research before I start him on the 6MP thanks for the info

The problem is 6-mp research will tell you all the scary about the drug but non of the scary about under treated crohns
You can get a second opinion by records which means you don't travel there but all the paperwork and scans etc do.
That is the easiest if travel is a problem
Under treated crohns can cause lots of damage even death - that is a known
Lymphoma is just a risk
Much less than the risk of putting your kid in a car btw
Risk of death for those under 14 by car
1 in 250
By drowning 1 in 1000

Lymphoma is way less than that
Not giving medicine for kids with crohns is not really an option
6-mp can be easily started and stopped
DS had no real side effects
It just kept raising his liver numbers
So we stopped it
And switched to mtx which wasn't enough

All the possible side effects stink for crohns meds
But realize they are only possible side effects
Not treating or under treating can be just plain deadly
It's not a possible sorta thing that's why docs use the scary drugs
Second you typically don't get to chose which meds will work for your kiddo
Pick one hope for the best
If it doesn't work for them move on
So most possible side effects don't come into play at all
It's just what happens to keep your kid in remission
DS has been in all the drugs and combos
So finding one that works is gold

ok thanks yeah I would always make sure he is treated, I am a nurse so sometimes that is a double edge sword.. too much knowledge

Hey there and welcome although I am sorry you have a need to be here.

I have two daughters with Crohns. My youngest was dx'd in January and we still haven't found what is going to work for her. Even Budesonide can't hold her. We are trying Exclusive Enteral Nutrition with the hopes of phasing in some diet that might be just the lift the Methotrexate needs.

None of the drugs have an attractive risk profile. There really isn't one that makes me shout, "Ooooh give me that one please! I want that one!"

MLP is right...the drug you end up loving will be the drug that works for your kid!

The best you can do is weigh the risk and reward of the not treating, the status quo and all other options being presented. Educate yourself and ask the GI questions until you are the most comfortable you can be.

Thiopurines work well. That is why docs like to use it. However, the pediatric GI's are starting to shy away from it because of the increased risk of lymphoma and the fact that other research is coming out that shows Methotrexate, a previously under used drug, is also very effective (although don't judge by my child). My girls' doc has stopped prescribing thiopurines for all new patients but is keeping current patients doing well on them, on them.

Risks are just that...risks...I doubt you weighed the risk of getting in the car this morning. Or analyze the risk before you let him jump into a pool or the ocean. They are important to consider and weigh and make an educated decision. You just don't want to end up years down the road saying, "I wish you told me or I wish I knew".

I will send you a few videos of GI's speaking at a conference both pro and con for this class of drugs.

Good Luck with your decision. I really hope whatever you decide is what will be his magic!

http://www.youtube.com/embed/XvkRrdOb-v0 con

http://www.youtube.com/embed/4vqqhHbs7-o pro

http://www.youtube.com/embed/ayQxJJ603Vw con pediatric

Hi and welcome!
Here's a great presentation which talks about the risks and the benefits of various IBD meds. My daughter was on Imuran, which is very similar to 6MP, and didn't have bad side effects. Nausea that lasted for a few days when we started it or increased the dose. She took it at night with a snack so that she would sleep through any nausea. No other side effects.

Here's the presentation: http://programs.rmei.com/CCFA139VL/

In our case, we found the disease much scarier than the meds. Both my daughters are on an anti-TNF and an immunomodulator. The older one is doing great and the younger one is slowly getting better.
Good luck!

Welcome, my son was dx'd at 10 he is now 16 and was on Azathioprine (sister drug for 6MP) for several years with no issues, he is now on remicade. It was discussed prior to starting remicade when he was entering his teenage years to pull him off Aza due to the lymphoma risk. He started on methotrexate but had a bad reaction to it and it is not an option for him and he was put back on Aza.
When we discovered that Aza was not strong enough, he was moved to remicade. Yes the risk is in the back of my mind but him not dealing with any symptoms or issues of Crohn's is an incredible thing.

mommaof2 said:

hi all
I am new to the group.. I have a 9 year old son that has been diagnosed with crohns for 2 years and just got changed off apriso yesterday to 6MP because we cant keep him off budesonide and he keeps having flares off budesonide.. I am worried about this medication and any side effects.. any advise would be great
thanks

Click to expand...

Hello, I am new to forum as well. My daughter was diagnosed with CD in spring of 2014. Her doctor started her on Remicade and then added 6MP. Please see my post under the Remicade thread in this forum. But yeah, I agree with the my little penguin. 6MP is not the 1st line of drugs to treat inflammation. May be it used to be. My daughter's docs favor the step-down approach and Remicade was the outright choice. Because she developed antibodies to Remicade, he added an immunomodulator and 6MP was decided upon because studies has shown that is cause less harmful side effect in female sufferers. Methotrexate was the immunomodulator of choice in males. Your insurance has to approve the Remicade infusions because of the cost $$$$$. I am a nurse as well, so I hear you about the seeing the worst. But yeah, check my other post.

Step up/Step down....this is a highly debated topic these days.

In kids who present with severe disease the choice is usually clear and top down. However, with mild or moderate disease the water is a bit muddy. They are working hard to identify which patients would benefit the most from the top down approach. They certainly do not want to throw all the kids on biologics right away.

The approach to the disease changes all the time. Our doc is very much a top down doc but three years after my first was dx'd and put on Remicade, he has my second on an immunomodulator and is avoiding biologics like the plague.

Guess what I am saying is there is no hard a fast rules. Differs from doc to doc and patient to patient. The important thing is that you treat, access and move when necessary.

It is scary and devastating to learn that your child has this terrible disease. I was terrified of ALL the options presented to us--shocked, distraught, confused. And I continue to worry about the possible consequences from Remicade and about her future. What I do know is that when my child was diagnosed, there were concerns for possible fistulas and abscess. And i want best possible option to prevent further damage. Remicade fit that bill for her. All the GI docs we met in the hospital and follow-up consultations recommended it. It's not an easy choice for anyone to make.

I think Crohnsinct point was biologics are not needed for every child
Since "crohns" is an umbrella disease that has many different levels and variations
For some kids they are the best first choice
Or a good choice later after other meds have failed
Add in most insurances now require a child to fail all the cheaper /lower level drugs first
Before moving to biologics
Our insurance is one of those

mommaof2 said:

i am in Omaha Nebraska and not at a large teaching hospital however I will do some more research before I start him on the 6MP thanks for the info

Click to expand...

Omaha is not very far from my neck of the woods. They have a large teaching hospital/clinic here called the Mayo Clinic, should you want a second opinion.

crohnsinct said:

The approach to the disease changes all the time. Our doc is very much a top down doc but three years after my first was dx'd and put on Remicade, he has my second on an immunomodulator and is avoiding biologics like the plague.

Click to expand...

Hi, may I ask why the GI changed his opinion on biologics? thank you.

Well the only reason I can think of is that she is of the bottom to top philosophy. My son has an atypical case where he doesn't have constipation or diarrhea he just gets stomach pain and headaches when he flares.