Flare after increased Remicade dosage ? Need advice . Thanks and appreciate

[crohnsteeny]

Hi All

I have been reading pretty much every post on this website to gather as much information as possible. My 14 year daughter recently got diagnosed (late June) with severe small bowel Crohn's through MRE and Capsule (She also has Arthritis and couple of other auto immune conditions (Iron deficiency/etc). Our GI also did an IBD panel/expanded panel and Prometheus, which all connected the dots pretty well. On july 30, she got her first Remicade dose, August 12, Sept9 as her loading doses. Her symptoms (Abdomen pain, which was constant 6 or 7 dropped to 2 or 3, and most other symptoms, severe diarrhea, joint pain/etc pretty much vanished). Her loading doses were 6Mg/kg. On Oct7, she had an increased dose to 10Mg/Kg to increase efficacy. (Because she still had pain 2 to 3, plus 5 to 6 times a day diarrhea). Within 4 hours, she ended up in emergency due to symptoms coming back.

Past few days of evaluation showed, severe stool in colon (Switched from diarrhea to constipation), she also had UTI the same day as increased Remicade dosage, so they put her on antibiotics. She got discharged today after 5 days of IV-Steroids and 30 days of 40Mg Prednisone and a bunch of other meds.

Questions I have for the great team here

== Has anyone had a flare when Remicade or other biologic dosage was increased ?
== Did anyone switch from severe diarrhea to severe constipation on increased Remicade dose ?
== Also, if this did happen to you, did your nausea/stomach ache increase. (BTW, they did CT scan and XRay and ruled out any strictures/obstruction)
== Did this cause severe stomach pain that required a trip to emergency ? If yes, how many days before it was controlled ?
== Any other suggestions


Apologize for the long thread and appreciate any feedback

 

[my little penguin]

Did they give her levsin or bentyl for the abdominal pain (anti spasmodic)?
Both stop abdominal pain but can cause severe constipation.
Constipation can be caused by crohns (most Gi ignore this since it’s not in the big crohns book )
Second constipation can cause significant er worthy pain.
Did the Gi give her miralax to clear the constipation ?
Most are hesitant if the kiddo just had diarrhea.
Which makes the constipation worse
Pred can cause constipation as well .

my kiddos crohns causes constipation which has meant daily miralax for the last 11 years .
We fell into the bentyl /levsin trap which resulted in admits
And the he had diarrhea the week before so stop miralax .
Keep a stool log
Frequency
Bristol type
Urgency
Etc…
Miralax can help so much so ask her Gi

visceral hypersensitivity is doc speak for pain in the gut not due to crohns
So when inflammation is present the nerves send signals to the brain over and over to let you know that there is something wrong -pain
So you get help
But just like a remote button for the tv
If the same one gets hit too many times too many days
It can get “stuck” so even though the inflammation is gone or reduced nerves still send signals

that said get the constipation under control first
Daily 1-2 bm Bristol 4 for a few weeks

they can give her a tens unit which breaks up the pain signals from the gut
Daily exercise (walking ,swimming ) help the gut move and reduce pain
She can rate pain or tell you about it
But don’t ask constantly how she is feeling
My kiddo had it
It was a disaster because
We stopped miralax per Gi and the Gi left him in pain
Not factoring only having one bm every 5-6 days was causing it
We also avoid high fiber since that just irritated his gut more

 

[pdx]

My daughter also deals with constipation and associated pain. When her Crohn's is flaring badly she has diarrhea, but once the Crohn's is more under control, she becomes constipated. Like MLP's son, she takes a mild daily laxative. In her case, lactulose works better than Miralax. She takes a couple of teaspoons daily, and adjusts the dose slightly as needed.

I think it's possible that rather than a flare with the increased dose, your daughter's system just overshot and went from diarrhea to constipation as her diarrhea ended. Constipation can cause a lot of pain. Just a warning if you try a laxative: it's hard to get the dose exactly right at first. We tend to go a few days with no results where we keep increasing the laxative dose, then get some diarrhea, and then reduce the laxative and narrow in on a good maintenance dose.

Good luck with figuring out the right treatment for your daughter--the first 6 months can be hard, but it usually gets much better after that.

 

[crohnsteeny]

Thanks for your response My Little Penguin and PDX

Yes, they gave her Miralax and that is helping her. She has also been put on Prednisone. Levsin or Bentyl does not work for her unfortunately. We will try the Tens unit (It had not helped her during her first flare up), but we will try again. From what I hear, it takes some time to figure our the best treatment that would work for her. Wish there was a one treatment for all. Appreciate your replies again. Hope your kids are in remission and doing well now

 

[my little penguin]

Tens units bentyl or levsin - all do not help for flare pain
But once it’s just over active nerves
Then those can help with an exercise program
…
Glad they gave her miralax.
and pred

 

[crohnsinct]

Second what MLP and PDX said. I was actually going to say the same as PDX. If her presenting symptoms were diarrhea and the Remicade seems to have given her constipation then maybe she just went too much the other way. At the beginning it is really trial and error to find the exact right dose and timing for what will work for each kid. But that was a pretty dramatic swing.

For one of my girls, a fast and hefty infusion gives her really bad stomach pain. It has happened three times now. The docs all say there is nothing documented in the literature about this but they believe her and so they have slowed down her infusions and that seems to help. This isn't scientific and I am not even saying what happened for your daughter but can't hurt so maybe worth a try.

Did they get a Remicade level/antibody level on her prior to increasing the dose? At the most recent infusion?

How were her labs when she was admitted? Fecal cal, CRP, HGB, Albumin? Are they improving?

Poor kid. Pain is the worst. I wish she didn't have to deal with it. You might want to ask your GI if the hospital they practice at has a pain management program. My daughter with small bowel Crohn's was dealing with quite a bit of pain with abdominal adjoints and the pain program really helped. Especially after she was in remission and still dealing with pain (the over active nerve thing MLP mentioned).

 

[crohnsteeny]

Thanks My Little Penguin.

@crohnsinct , Thanks for your reply. Can you please let me know which pain program helped. Currently we are working with Children's Hospital in Colorado pain clinic. Their next step was to give her TPI (Trigger Point Injections). We said no to any injections. Please let me know what helped in dealing with hypersensitivity. That would be really helpful. Thanks again

 

[crohnsinct]

There are so many methods. Paging @Maya142 she is one of our pain management experts. For T it was a combination of tens unit, some sort of cream, meeting with a psychologist with the pain program, meditation, exercise, LOTS of P/T.

 

[my little penguin]

For ds
He met a physical medicine doctor
But by time he was able to get in for the planned pt he was fine
We added back in miralax
Which was major
plus a ton of daily exercise (walking in the pool if it hurt too much outside to walk )
Heating pads , massage units. Etc also helped

 

[my little penguin]

And the part where his rheumatologist upped his humira dose to every 7 days and that calmed things down a lot. .

 

[crohnsteeny]

Thanks @my little penguin and @crohnsinct . She was diagnosed in July. Hopefully we will see her get into remission soon. Thanks again for the support