Q about remicade wearing off

[Worried mama]

Need thoughts here. My son had remicade on June 26, so about a month ago. Saw immediate results, appetite was great, etc. the dosage was increased at that time because we hadn't seen results prior to that and his levels had been low too. This was his fifth infusion. Now, only 4 weeks later, I'm seeing his appetite decrease, seeing more gas, larger mushier bowel movements for the past 3 days.

What's going on? Going to call GI on Monday but do you think it could wear off so quickly? Is this typical?

Ugh, I want this to work so badly....I'm very nervous. Thoughts? Advice? Thanks!!

 

[Mr chicken]

How's my infusions has he had total ???
At least three loading doses ???
Ds would only last 6 weeks never made it to 8 weeks and needed the dose increased to 7.5 mg as well.

He just may need tweaked
Kids sometimes metabolize the drug faster

 

[Worried mama]

Mr. Chicken, this was his 5th infusion....they increased the dosage this time around. Yeah, I'm thinking he may need it more often...thank you..

 

[Mehita]

So it's been about 4 weeks and what's his dose? Is he on anything else with it? Like methotrexate or an immune suppressor?

 

[pdx]

We had a similar situation. After the first 3 loading infusions, E's doctor upped the frequency to every 6 weeks and added MTX. Last infusion (which was her 7th), her doctor upped the dose to 7 mg/kg. Her symptoms are all gone now, and her labs are all normal, and she can eat everything without problems, so I think we've found the right amount for now. Her doctor tested her Remicade trough level 3 times along the way to help guide the increased dosing.

So I would definitely talk to your son's GI, but I don't think you need to be overly worried yet. There's still lots of tweaking that can be done to your son's dosing.

 

[Maya142]

I agree with everyone, your son might just need a higher dose or more frequent infusions.
M went from 5mg/kg to 7.5mg/kg and then finally 10mg/kg which worked best with 15 mg of MTX. Even at that dose, she needed infusions every 4 to 5 weeks.
Hang in there!

 

[Worried mama]

Thanks. I'm not even sure what the dose is, it was just upped the one time. He doesn't take anything else, just pentasa which prob isn't doing much. I guess I'm worried too because we are supposed to go on vacation Thursday....and I want him to feel good and enjoy it....ugh. Will let you know what GI says.

 

[Worried mama]

GI said to move up his appt so we have it set for today and leave for vacation tomorrow. Only 4 1/2 weeks after last infusion. Now I'm second guessing myself and wondering if his 'symptoms' are really symptoms and fearing it's too soon for another treatment. What happens if he gets too much in his system? Ugh....I'm a wreck! His appetite is def less than what it had been after last dose, more gas and mushier stools, but no mouth sores which is a sure sign for him. No fever, also a sign for him. But then I don't want to go away and have a huge flare and be able to really help him.

 

[Mr chicken]

It's not going to be bad
Breathe
You can take 20 mg/kg every 4 weeks and be fine
Enjoy the boost and then really enjoy vacation

 

[Farmwife]

Agreed, Grace is every 4 weeks at 10mg. It was just upped to the highest for her age (6).
Like you guys it worked right away but had warn of a bit.
This infusion at 10 mg had helped a lot.

Enjoy your vacation!

 

[Tesscorm]

There are lots of people on a 4 weeks schedule. There should be no problem and now you can all enjoy your vacation without worries!! :ghug:

 

[Maya142]

My daughter is one of the kids who did the "experimental" high dose Remicade - 20mg/kg every 3.5 to 4 weeks for her AS.

It absolutely terrified me! She really had NO side effects though - no increase in infections or anything like that. In fact, I think she only got one cold (normal kid stuff ) during the time she was on it. She recovered fast with no issues.

There were many kids on infusions every 4-5 weeks at our hospital. Hope it works wonders for your boy!