Upon diagnosis of Crohn’s, my son’s only symptom has been bleeding. Once he started Humira, the frequency and urgency increased. Bleeding has gotten a little better, but still bleeds a little with each BM. Been on Humira for 4 months. Does it sound like Humira could be working since bleeding has slightly decreased or is there something better to target the bleeding?
-
Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.
Still Bleeding
- Thread starter Jandersen20
- Start date
Suggest posting in parents group here
So it depends on where his inflammation was at
Rectal inflammation is the hardest to treat and typically last to heal
That causes frequency and urgency
Also what color of blood ?
In the water of the bowl only?
On the stool outside only or mixed in ??
humira doesn’t increase frequency or urgency
That typically is due to humira needing help to squash the inflammation your kiddo started with
Most need things added like high frequency of humira (every week ) when inflammation is high kids burn through humira faster
Adding methotrexate which lets the humira hit the inflammation harder
Adding een (formula only no solid foods ) for 6-8 weeks or longer
Adding Uceris foam (rectal foam ) if rectum /sigmoid is the issue
Any or all of the above may be needed to be added to humira
How is his blood work?
Crp/esr ??
Can you get a second opinion at another university hospital with a pediatric Gi ?
Boston childrens ,cchmc (Cincinnati childrens ), chop (childrens of Philadelphia) ?
my kiddo has been on Stelara 90 mg every 4 weeks plus mtx for years
Insurance decided he needed to prove he needed the meds and couldn’t take it every 8 weeks
Gi didn’t agree
But had him try once at every 6 weeks
He flared mildly -fecal cal went up
Frequency/urgency went up
Even though he went back to every 4 weeks the next dose
It took months of Uceris foam to calm down the rectum in addition to the Stelara/methotrexate
the only thing that stops frequency/urgency /bleeding
Is getting inflammation under control
Parents of Kids with IBD
If you are a parent or guardian of a child who is suffering with any kind of IBD condition, please feel free to post in here.
crohnsforum.com
So it depends on where his inflammation was at
Rectal inflammation is the hardest to treat and typically last to heal
That causes frequency and urgency
Also what color of blood ?
In the water of the bowl only?
On the stool outside only or mixed in ??
humira doesn’t increase frequency or urgency
That typically is due to humira needing help to squash the inflammation your kiddo started with
Most need things added like high frequency of humira (every week ) when inflammation is high kids burn through humira faster
Adding methotrexate which lets the humira hit the inflammation harder
Adding een (formula only no solid foods ) for 6-8 weeks or longer
Adding Uceris foam (rectal foam ) if rectum /sigmoid is the issue
Any or all of the above may be needed to be added to humira
How is his blood work?
Crp/esr ??
Can you get a second opinion at another university hospital with a pediatric Gi ?
Boston childrens ,cchmc (Cincinnati childrens ), chop (childrens of Philadelphia) ?
my kiddo has been on Stelara 90 mg every 4 weeks plus mtx for years
Insurance decided he needed to prove he needed the meds and couldn’t take it every 8 weeks
Gi didn’t agree
But had him try once at every 6 weeks
He flared mildly -fecal cal went up
Frequency/urgency went up
Even though he went back to every 4 weeks the next dose
It took months of Uceris foam to calm down the rectum in addition to the Stelara/methotrexate
the only thing that stops frequency/urgency /bleeding
Is getting inflammation under control
Thanks so much for your reply. This is all very helpful. Last blood work in October was pretty good. GI said inflammation levels had done down a bit, even though he still has blood, urgency, and frequency. But now, here we are a month later and nothing has changed so GI is going to to blood work and check Humira trough levels in a couple weeks. He also has diarrhea every now and then, but nothing crazy. The strange thing is that he didn’t have urgency, increased frequency, or occasional diarrhea until he started treatment right after he was diagnosed in July. It doesn’t seems like the Humira has really helped all that much, other than the blood slightly decreasing. I’ll be curious if the GI decides to increase Humira to weekly or change Biologics all together. Do you know where I can find information on the safety profiles of the different Biologics? I would really like to see like a rank in terms of safety of the different Biologics.
Thank you!!
Thank you!!
The thing about biologics
They all seem extremely scary so picking by safety profile is not recommended at all
Your child was on humira which has been used for decades
No one would recommend switching off anti tnf without adding meds to help humira
And or increasing the dose
no amount of safety data will help if your kiddo does not respond to meds since the risks are far greater if your child is a primary non responder
Meaning he didn’t respond at first to the drug
there are limited biologics for crohns
Remicade
Humira
Both anti tnf alpha long history safety profile most used
cimiza same anti tnf alpha not used since less likely to get as good of a response
Stelara -iL-12/23 low risk of infection but marginally for colon better for small intestine but takes 6-8 months to work(only approved for adults with crohns )
entyvio-takes 12 months to work better on colon not as good on small intestine
that is it
All that is approved
Still better than when my kiddo was dx
Remicade was all that was approved
He started humira off label (it was approved for adults with crohns and approved for kids with juvenile arthritis)
so not much to look at
Just hope it’s not refractory disease
That is why they add a ton of meds to try to get humira to work
Steriods
Een
Abd methotrexate
Sometimes all three before they switch biologics
They all seem extremely scary so picking by safety profile is not recommended at all
Your child was on humira which has been used for decades
No one would recommend switching off anti tnf without adding meds to help humira
And or increasing the dose
no amount of safety data will help if your kiddo does not respond to meds since the risks are far greater if your child is a primary non responder
Meaning he didn’t respond at first to the drug
there are limited biologics for crohns
Remicade
Humira
Both anti tnf alpha long history safety profile most used
cimiza same anti tnf alpha not used since less likely to get as good of a response
Stelara -iL-12/23 low risk of infection but marginally for colon better for small intestine but takes 6-8 months to work(only approved for adults with crohns )
entyvio-takes 12 months to work better on colon not as good on small intestine
that is it
All that is approved
Still better than when my kiddo was dx
Remicade was all that was approved
He started humira off label (it was approved for adults with crohns and approved for kids with juvenile arthritis)
so not much to look at
Just hope it’s not refractory disease
That is why they add a ton of meds to try to get humira to work
Steriods
Een
Abd methotrexate
Sometimes all three before they switch biologics
This is good information. You’re very knowledgeable. Thank you for your responses.
Are you aware of a blood test to see which Biologics may work?
There are no blood tests to see which biologic would be more effective.
Health insurance typically dictates you try the cheapest first -humira and then are permitted to go up in price after you prove you failed .
Stelara/entyvio are very very expensive.
Health insurance typically dictates you try the cheapest first -humira and then are permitted to go up in price after you prove you failed .
Stelara/entyvio are very very expensive.
Do you have any information on what suppositories/foams work well to target bleeding? There are so many out there so wondering where I can read about different kinds and their safety profiles. I think you mentioned Uceris foam. Is that similar to mesalamine?
Mesamalmine is similar to aspirin in structure
Think 5-ASA
It treats only the surface of the intestine so great for UC
But crohns affects the full thickness so the underlying layers are left to have simmering inflammation
Most great safety profile drugs are useless in terms of effectiveness
Mesamalmine is one of those
Most Gi equate giving Pentasa for crohns to giving an aspirin for a brain tumor not going to help too much but not going to hurt either
Suppositories only work if the tiny part of the rectum is inflamed
Not of the rest of gut is inflamed
Uceris foam is a steriod which treats the rectum and sigmoid colon (sometimes) …
But again not going to stop bleeding if the rest of the intestine is inflamed .
please talk it over with your Gi
Most kids need a 1,2,3 punch of multiple therapies to get the evil crohns under control
Then can reduce meds /therapies later when the inflammation burden is under better control
there isn’t a specific drug for bleeding
Only reducing inflammation
Once inflammation is under control bleeding will stop
Think 5-ASA
It treats only the surface of the intestine so great for UC
But crohns affects the full thickness so the underlying layers are left to have simmering inflammation
Most great safety profile drugs are useless in terms of effectiveness
Mesamalmine is one of those
Most Gi equate giving Pentasa for crohns to giving an aspirin for a brain tumor not going to help too much but not going to hurt either
Suppositories only work if the tiny part of the rectum is inflamed
Not of the rest of gut is inflamed
Uceris foam is a steriod which treats the rectum and sigmoid colon (sometimes) …
But again not going to stop bleeding if the rest of the intestine is inflamed .
please talk it over with your Gi
Most kids need a 1,2,3 punch of multiple therapies to get the evil crohns under control
Then can reduce meds /therapies later when the inflammation burden is under better control
there isn’t a specific drug for bleeding
Only reducing inflammation
Once inflammation is under control bleeding will stop
Once again, great information and very helpful. This is helping me prepare questions for our next appointment in a couple weeks. Thank you!!
Was bloodwork normal ? Or just inflammation markers lowered ?
Sed rate and crp should be normal
You should have access to test results
All should be in the normal range even if some wbc are on the lower end of normal
Fecal caloprotectin should be less than 50 as normal
If scopes haven’t been done in months
Before switching scopes /MRE /capsule normally are done to know where the disease is at
The beginning
Sed rate and crp should be normal
You should have access to test results
All should be in the normal range even if some wbc are on the lower end of normal
Fecal caloprotectin should be less than 50 as normal
If scopes haven’t been done in months
Before switching scopes /MRE /capsule normally are done to know where the disease is at
The beginning
Thank you. Last blood work in October showed a little lower in inflammation so the GI thought he was making a little progress. I think she was hoping to give the Humira a little more time to do it’s thing. He started it in July. But since he still has some bleeding, urgency, and frequency, she’s having him do blood work right before his next Humira injection to see what trough levels are. So we’ll do blood work again in a couple weeks. Maybe GI will increase Humira frequency and add in something else like MTX or even a foam.
Foam is shorter term
Just like other steriods not to be used long term even though it’s just locally absorbed - less systemic
methotrexate can cause side effects
With injections of mtx my kiddo had flu like symptoms and horrible nausea for 5 days
One good day then shot again
But with mtx pills he only has some nausea
some kids have the opposite
Folic acid daily also helps
Just like other steriods not to be used long term even though it’s just locally absorbed - less systemic
methotrexate can cause side effects
With injections of mtx my kiddo had flu like symptoms and horrible nausea for 5 days
One good day then shot again
But with mtx pills he only has some nausea
some kids have the opposite
Folic acid daily also helps