Three Months of Humira and Counting

[Farmwife]

On December 13th they said to give Mtx eight weeks to work.
A week into it her JRA was getting far worse.
So they added low dose pred.
A couple weeks further into it she got worse again.
So they added humira. They said give it three months to work.

I posted a week ago on how it seemed Grace's stomach was improving.
I wish I had never said it because it all went down hill.
What's scary is the bowels are changing.
Dailey bm's, pinpoint abdominal pains, major pain flare up in her joints and tendons, lots of gas (new for her), night fevers, took herself off of food and unable to go to school.

I type all that to ask you all,
Did humira take longer then three months to work for you or your child?

Also, I believe she'd in a GI flare, so does that mean the drugs didn't work at all or does the dose need to be upped?

We're meeting with the head rheumatologist next week and hopefully will be in talks with the GI.
But I can tell you the rheumatologist will say it's a GI department now and the GI will either say wait it out or scope.

No win for Grace.....still.

 

[DustyKat]

Oh Fw, I am so, so sorry to hear this about Grace. :ghug:

We haven’t done Humira here but just wanted to send loads of squishy but gentle hugs to you and your little Princess, bless her. :heart:

Dusty. xxx

 

[Tesscorm]

Sorry to hear! I know some of these meds can take a while to become therapeutic...

I believe there's a prometheus test to test serum levels of humira... I think it's a fairly new test. Maybe having the test done is worth discussing with the rheumatologist or GI???

 

[Clash]

Sorry to hear about the down turn. Hope you find some answers soon!

 

[Maya142]

Really sorry to hear about Grace, Farmwife. Poor kiddo.
When M was on Humira the first time, she was on it 3 months (did nothing), added Methotrexate, and then 5 months later, she started feeling better. So it took a total of 8 months to work and actually I'm shocked we didn't give up on it but I'm very glad we didn't because once she started getting better, she got SO much better that she was almost "normal" for a year and a half.
Also, it took weekly shots of Humira (at the adult dose but she was much bigger than Grace) plus 20mg of MTX for it to help her joints.

 

[my little penguin]

DS took much longer than 3 months on humira .
He started last April ped dose. (20 mg).
July went 40 mg
By the end of October things were better.
So 7 months
But that was after a full 8 months on remicade at a good point.
Humira just takes a while .

 

[Farmwife]

Well the reason she's on low dose prednisone is a bridge therapy between mtx and humira so....................


Would full EEN work again?

I thought I heard that EEN will never be as good the second time around.

 

[my little penguin]

EEN is not going to help her JRA side of things .
Gi wise not sure

 

[Jmrogers4]

No more advice just lots of hugs!

 

[Goofychicken]

Well the reason she's on low dose prednisone is a bridge therapy between mtx and humira so....................


Would full EEN work again?

I thought I heard that EEN will never be as good the second time around.

We've used EEN twice now and it worked just as well the second time around. I don't know how long it takes efficacy to go down, but it's our preferred course of treatment for the forseeable future when Maddie flares.

Hugs to you and poor Grace. I hope you can get her sorted out soon!

 

[Farmwife]

Thanks everyone.:ghug:


GI nurse relayed the doctor's message,

No food for two weeks. Then we'll reevaluate.:yfaint:

The Prometheus test for humira sounds interesting and I'll ask the rheumatologist about it.

Another question,
Has a type of food ever caused a flare for your child?

 

[Farmwife]

We've used EEN twice now and it worked just as well the second time around. I don't know how long it takes efficacy to go down, but it's our preferred course of treatment for the forseeable future when Maddie flares.

Hugs to you and poor Grace. I hope you can get her sorted out soon!

How long does she do EEN for a flare?

 

[DustyKat]

Another question,
Has a type of food ever caused a flare for your child?

It hasn’t for us. Also my kids don’t suffer with food allergies.

Dusty. xxx

 

[my little penguin]

maybe sauerkraut once - but raw veggies cause him D in 24 hours so....
no major symptoms or lasting power though.

 

[Maya142]

Another question,
Has a type of food ever caused a flare for your child?

Raw and even cooked veggies cause diarrhea for M. She also doesn't do well with milk products and is lactose intolerant (but also doesn't do well with lactose free milk for some reason).

 

[Emily's mom]

Raw and even cooked veggies cause diarrhea for M. She also doesn't do well with milk products and is lactose intolerant (but also doesn't do well with lactose free milk for some reason).

My daughter doesn't have food allergies as far as I know. However, she doesn't seem to do well with milk or lactose free milk either. Yogurt she is fine with. We stay away from fried foods, too.

 

[Farmwife]

Debilitating stomach pains and now has small amounts of visible blood when pulling stomach content out her tube.:confused2:
I guess I'll be looking at her stool to see if it shows up there.

This is not how to start the week.:ymad:

 

[Farmwife]

We meant with the rheumatologist and he has upped her humira to every ten days and increased her mtx dose. He feels because of the continuing joint pain and GI flare that it is needed.

He rheumatologist) made an interesting statement the he is part of a group of doctors that are taking part in a medical study and
their giving pediatric patients higher doses of (TFN sp?) medicine like humira.
He made it sound like it was higher then the recommended doses.
He said that he has about fifty kids doing this.:eek2:

Just goes to show you that the doctors are still trying to figure things out for our kids.:kiss: Today, I kind of like doctors.

 

[Maya142]

Do you mean TNF inhibitors Farmwife?
Our rheumatologist also has done several studies with doses of Remicade going up 20mg/kg. M is now on 15mg/kg. It was something I'd never heard of prior to seeing this rheumatologist. I'm really glad they're doing studies!

 

[Farmwife]

Do you mean TNF inhibitors Farmwife?
Our rheumatologist also has done several studies with doses of Remicade going up 20mg/kg. M is now on 15mg/kg. It was something I'd never heard of prior to seeing this rheumatologist. I'm really glad they're doing studies!

That would be it. I've always read TFN inhibitors but never had to type it.:ybatty:
We'll what's interesting is her GI acted like he wouldn't have put her on all the meds.
Maybe rheumatologist just treat more aggressively???

 

[Maya142]

That's actually something I've noticed. Many rheumatologists now don't bother with mtx but go straight to biologics because they work better. There's no talk of "saving" them because once the damage is done, it's done (of course that's the case with Crohn's too, I guess that's why the "top-down" approach is becoming more popular).

 

[Clash]

C was on a high dose of remicade for his CD for the last several months before coming off. His GI said he had a few kids on that regimen and a couple other docs his the group had more on it.

It didn't help with disease progression for C but the GI has seen good results too.

 

[kimmidwife]

No advice. Just sending you a hug!

 

[Farmwife]

:eek2:Yellow Stomach bile, that's what I pulled out of her tube this morning.
Has never happened before.
She was in pain yesterday and this morning it took a lot longer to tube fed her.


Has this ever happened for you or your kiddo before?
What was the cause, if you know?

 

[my little penguin]

Did the Gi call you back about it?

 

[Farmwife]

Yes on Friday but got the answering machine. I even called the rheumatologist to make sure this isn't because of the increase of mtx but I don't think it would be that.
The yellow bile is new as of this morning.

I just had to slow her second feed down.:confused2:
She is happy this morning. I'll see how the day goes.

 

[DustyKat]

Sending hugs your way Fw and hoping this a glitch and nothing more. :ghug:

You are both in my thoughts. :heart:

Dusty. xxx

 

[Sascot]

Sorry I missed all this, been feeling a bit sorry for myself . Hope things settle down with the med increases! Thinking of you