Trying a biologic again?

[Maya142]

My daughter was on Humira for about two years for juvenile arthritis and one day it just stopped working. Soon after she was diagnosed with Crohn's and was put on Remicade and methotrexate (March 2013). She stopped taking mtx a couple months ago because of side effects and Remicade just hasn't been helping her enough with diarrhea, stomach pain and joint pain. She's in pain all the time and she's on the max dose (10mg/kg) every 4 weeks.
On Humira she was in remission - basically no joint pain! Her GI has brought up putting her back on Humira to see if it works. Her rheumatologist agrees that it's a good option. Her older sister (who has arthritis but not Crohn's) is on Humira and is going very well.
Has anyone had a kiddo re-try a biologic? I know that she might have antibodies but both our GI and our rheumatologist think trying Humira is better option than going to Cimzia.
Thoughts? Opinions?

 

[Farmwife]

I'm sorry as you know we're at the beginning of the duel dx road.
I hope she can get some relief.

HUGS

 

[my little penguin]

Couple of thoughts .....
First DS has never re tried a biologic since he is allergic to remicade .
Although we tried that one twice with steriods to see if he could tolerate .

Have you tried EEN with the remicade ?
I only ask since crohnsinct did that with her dd to avoid Mtx and it boosted the effectiveness of the remicade similar to pred .

All biologic can build antibodies remicade a antibodies tend to produce allergic reactions
Humira just typically tends to stop working .

You may want to ask on the humira treatment section
I thought a member or two ( adults) went back and re tried humira
Without a whole lot of success
Meaning it either didn't work at all or didn't work as well as the last time .

Not an easy answer to say the least.


Mine DS remicade took care of everything but his system didn't like it much and cause lots of skin issues . Humira is working for him Gi wise but he still has daily joint issues .

I wish there were better drugs period

 

[my little penguin]

http://www.crohnsforum.com/forumdisplay.php?f=59

Humira treatment link

 

[Maya142]

Thanks MLP. I have looked at that but I'll post my question there. There seem to be a few people who have restarted Humira successfully and there are a few more on the arthritis forums.
I wish she would try EEN but she's 17 and completely against it. Her joint pain is basically debilitating (I just realized she only made it through 3 full days of school in December) but and in comparison, her stomach pain isn't so bad, so she isn't even open to trying it. If she was younger I would insist but at 17, there's just no way she'll listen. I'm still recovering from the last battle we had over enemas.
We're doing scopes again next month to see what's going on, so if there is a lot of inflammation I'll try to convince her, again!
I've already asked about Stelara and LDN and our doctors aren't comfortable with them.
Are there ANY other options? Her rheumatologist says there's absolutely no point in staying on Remicade, and at this point I agree, but I feel like there's nothing left.

 

[my little penguin]

What about adding sulfanszine ?
In combo with the humira to stop the joint pain?

 

[Brian'sMom]

Why not try the Cimzia? Its been around longer than Stelera hasn't it? As far as studies on it. Some say its like Humira in how it works. (Jury is still out on if its working for us.... we're on EEN trying to induce remission so any drug will work)

 

[Twiggy930]

My son takes Sulfasalazine for joint issues and azathioprine for GI issues. I used to think that the Sulfasalazine wasn't doing anything until he tried to come off of it and almost immediately had a arthritis flare that required prednisone. May be worth a try. These decisions are so tough.

 

[Maya142]

Sulfasalazine is a great idea, thanks! She's been on it before but it didn't do a whole lot by itself, but I think the combination could really help, since she responded well to mtx+biologic in the past.

Brian's Mom - For some reason both our rheumatologist and GI are against Cimzia. They've both used it and say that it just doesn't work well. I wonder if that's because the kids that tend to try Cimzia have more severe disease (because it's typically prescribed after failing Remicade and Humira) but I didn't think to ask. Anyway, since they were so against it I think we will be trying Humira.
Just out of curiosity, are the Cimzia shots less painful? My daughter is less than thrilled about the Humira shots, especially the loading dose.

 

[my little penguin]

As far as pain from humira
DS swears by the lidocaine
Your rhuemo should be aware of the journal article
You draw up lidocaine and add to the humira syringe.
This raises the pH and decreases the overall pain from the humira drug.

The difference is night and day for DS.

We also use ethyl chloride spray right before the injection for good measure.

He did fine with Mtx injections - no complaints of pain btw
He also gets allergy shots every two weeks so not a shot thing for him.


Good luck

 

[Maya142]

Thanks MLP, I will definitely bring it up. She does fine with other shots too - mtx was a breeze. It's just Humira.
The lidocaine is added to the prefilled syringe right? So we can't use the pen?

 

[Brian'sMom]

The Cimzia shots aren't painful. Its just more volume so once he got used to that feeling all was good. He says Nothing compared to Humira. (And he even does it bi weekly) I recently asked if we could go back to Humira combined with the MTX injection (we did oral before with no real benefit- thought maybe it'd be different with mtx injection). And my son said "NOOOOO". He was on Humira for 2 1/2 years and would 90% of the time be fine...but he said inside he was screaming cause it felt like liquid fire!! With Cimzia its 2 injections each time. But he still thinks Cimzia instead of Humira as for pain. But I think the Humira quit working so its not an option anymore. Just piddled out..... Even at every 10 days- inflammation slowly was creeping up each month.

 

[Maya142]

Just wanted to update and to say thank you to the mom's that suggested it- M is starting Sulfasalzine today, her rheumatologist and GI agree that she does better with a combination of meds!!
She will start Humira in the next few weeks, after having scopes done.

 

[Twiggy930]

I really hope that the combo works wonders for her. I've got my fingers crossed.

 

[Sascot]

Good luck, hope it works well!

 

[DustyKat]

Good luck with the scopes and the combo of meds! I so hope it works brilliantly for her. :goodluck:

Dusty. xxx