Worse after Remicade

[Peanut75]

Hi!
Have any of your children started a biologic (in our case , Remicade) and quality of life , symptoms are worse now than when first diagnosed?
4 months ago, our daughter was managing the pain but within that time, she is not able to attended school, manage her pain or have any quality of life. Her numbers from the Prometheus test look “good”. Any advice or thoughts ?

 

[my little penguin]

So questions
How old is your kiddo ?
What age was dx ?
Last scope /imaging ?
Fecal caloprotectin last done ?
Bloodwork??

you can have normal levels of remicade in the system but still be flaring which can cause pain

BUT. …. If all her bloodwork ,fecal cal scopes etc are NORMAL
Your child can have amplified pain syndrome (AMPS).
It’s when the level of pain felt is not online with the level /degree of inflammation present .

it happens to a lot of kids with crohns /juvenile arthritis.

think of it as if you have a remote
When there is inflammation present the gut pushes the number 2 button on the remote to send a pain signal to the brain .
Inflammation stays long enough the number 2 button on the remote often gets “stuck” and still sends pain signals even when the inflammation is gone .
Often times kids look worse ,won’t do school etc….

there are amplified pain clinics for kids at most university hospitals or bigger cities

the key is to determine if the inflammation is gone
If it’s gone then you can get the amplified pain under control through
A physical therapy amplified pain program
Walking
Swimming
Tens units
Massage
Lots and lots of exercise

make sure constipation is not an issue as well
that can be extremely painful

Gi tend to call it visceral hypersensitivity of the gut
All the cells are still on high alert

if inflammation is still present they can add other helper meds (methotrexate) ,formula only (exclusive enteral nutrition) , steriods or all of the above as well as increase remicade dosing
Most kids need high levels or high frequency of remicade

either way you can get through it
And your dd can get her life back

ds was 7 at dx
He started remicade at 8
Now he is on Stelara/methotrexate and almost 18
He has had amplified pain on and off
But knows how to squish it now

exercise daily is crucial for these kids
Especially with a physical therapist to help them create a routine that fits their needs

 

[Peanut75]

Thank you for your suggestions. She is 13. Her calpro level is still high but better than it was a few months back, so the inflammation is still present. She has another stool sample in the coming weeks. Her doctors just started her on Amitriptyline. We are planning to start acupuncture. I am curious about using an TENS unit. I will discuss both TENS and PT with her doctor during our visit next week. T

 

[my little penguin]

Amitriptyline is for belly pain BUT
IF HER FECAL Cal Is still high
Please get a second opinion
Abdominal pain from inflammation needs the inflammation to be gone
Remicade dosing can be increased up to 10 mg/kg every 4 weeks
Een (exclusive enteral nutrition-formula only ) can be added
Methotrexate can be added

No amount of tens units ,elavil, acupuncture etc will fix the pain from inflammation

please call another university hospital that has a pediatric Gi
Boston childrens
Children’s of Cincinnati(cchmc)
Children’s of Pittsburgh
Children’s of Philadelphia(chop )
Nationwide childrens
Stanford
Etc…

kids should not be left in pain if there is inflammation present
That is not amplified pain
There is a reason for the pain

fecal cal can and should be normal (below 50 ) once the gut is healed
AND you have the right med combo

Cant stand when docs leave kids in pain

second opinions do not mean you are switching gi
Or you don’t like your gi
They mean a fresh set of eyes agrees with your gi
Or suggests other courses of action
Most Gi welcome a second opinion

We got three different ones over the years for ds at different times

our past Gi was more than happy when we didv

if your Gi gets upset -time for a new gi

easy to do just call the new hospital Gi dept
They will talk you through the whole process
Simple and done

good luck

 

[Maya142]

I agree - it sounds like Remicade is not fully controlling the disease if her Fecal Calprotectin is still high. She may need a higher dose or more frequent infusions or both. She may also need to add Methotrexate. It's different for every kiddo and it takes time to find the right combination of medications.
My daughter started at 5 mg/kg every 5 weeks or so and then eventually upped it to 7.5 mg/kg and then 10 mg/kg every 4-5 weeks. That really worked for her. It took months to find the right dose and frequency and she was also on MTX.

I also agree with getting a second opinion. Amitriptyline/Elavil will control pain but not inflammation. You need to control the inflammation first. IF once there is no inflammation and there is still excessive pain, then I'd try the Elavil. I wouldn't try two things at once because you need to know what's working and honestly, getting the inflammation under control should really help her with the pain.

A second opinion and a second set of eyes never hurts and it seems like your current GI is not considering the fact that there is still inflammation that could be driving the pain. Good doctors welcome a second opinion, particularly in difficult cases. We've done several second opinions for my daughter when we thought things were not right.

My daughter also has severe arthritis and has gone down the amplified pain route. She has done an intensive pediatric pain rehab program as well as outpatient PT, OT, acupuncture, using a TENS unit, cognitive behavioral therapy with a psychologist, plus there are meds like Elavil, Gabapentin, Lyrica etc. BUT we only did the pain rehab program once her inflammation was controlled. It's definitely something to think about if she continues to have pain that is disproportionate to the amount of inflammation or if there is no inflammation.

But first I'd get a second opinion and try to get her Fecal Calprotectin down and the inflammation controlled, particularly since it sounds like she hasn't been on Remicade for very long. And do remember that healing takes time (think months, not weeks). Plus there are other med options if that does not work - other biologics like Humira or Stelara.

I'll tag some other parents who may also be able to help:
@crohnsinct
@Pilgrim
@pdx

 

[pdx]

I'm so sorry that your daughter is having such a hard time. My daughter had a similar experience. She was diagnosed at age 12 in December, started immediately on Remicade, and got worse over the next month. She was in the hospital twice, and she ended up being out of school from January-June. During that winter and spring, she was put on EEN and budesonide for several months, her Remicade dose was upped to 7.5 mg/kg every 6 weeks, and she started taking methotrexate. Starting EEN led to immediate and drastic improvement in her pain and energy levels, and she finally started gaining weight. By summer she was doing much better and the combo of Remicade and methotrexate was all she needed to stay in remission. She has been on that combo for 7 years now, with occasional dose increases.

I would encourage you to try EEN if possible, and talk to her doctor about getting Remicade levels, so that you can see if a higher dose is needed. I hope that your daughter is feeling better soon.

 

[Peanut75]

Thanks for your suggestions and encouragement.