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Remicade 8 weeks being reduced to 6weeks

Hi All,

14yr old son only diagnosed this time last year. He's been on Infusions now since January this year. Got call yesterday, last 8 week infusion on July 13
and results show low levels, so they want to start a 6 week regime.

Is this the start of bad news for us, what happens next ?

Larger dose for every 6weeks, will we return to 8 weeks at any stage?
Is this the beginning of the end of Remicade working?

Any advice
 

Tesscorm

Moderator
Staff member
No, adjusting the dose does not necessarily mean remicade is not working. My understanding is that very few kids manage on an 8 week cycle.

Is this the first time his levels were checked? Were antibodies present? And why were levels checked?

My son was started at 8 weeks but, at his first 8 week infusion, his levels were tested before the infusion. Levels were low and he was moved to 6 weeks. He's been steady at the same dose, at 6 weeks for approx. 5 years now. His levels were tested last year and all was still good. His remicade levels were actually a fair bit higher than the guideline (unfortunately, I forget the exact numbers now) and I did ask his GI if we could extend out to 7 or 8 weeks. His GI said he was happy with those levels, the guideline was just that, a 'guide' and the higher level gave a 'cushion' in case my son was late with an infusion. Higher levels do not increase risks.

Better to increase frequency and/or dose than run the risk of too low levels. Even if he remains in remission with the low levels for a time period, the risk will be that your son will develop antibodies due to the low remicade levels. Once this happens, then it is quite likely your son will not be able to continue with remicade due to an allergic reaction.

If your son had antibodies present, it could be that the antibodies are offsetting the remicade and there would be the risk of an allergic reaction. However, if this was the case, your GI would probably have mentioned this and possibly have added steroids to the infusion or discussed adding methotrexate to reduce the risk of antibodies forming.

Now, why were levels checked? Routine? Or because he was having symptoms? If no symptoms, it may just mean he's burning through remicade (metabolizing) quickly. Some people just do (my son did/does).

If they were checked because of symptoms, it still doesn't mean that remicade isn't working, sometimes inflammation can burn through the remicade more quickly and, for some people, it takes a higher dose (amount and/or frequency) to maintain remission.

Do you have any follow-up coming up with your son's GI?
 
Thanks Tess, he's already on MTX (subcutaneous injections) this was his 2nd 8 week infusion and first time level testing. WIfe took call from the clinical nurse, we see two different specialists here in Ireland a local Paed Dr (Gastro specialists) and also a Gasto Specialist is Crumlin the Childrens hospital.

It was the clinical specialist nurse who called my wife, seems its taken this long for the results, trying to get in contact with the local Dr. today with no hope, Next infusion was scheduled for 5th Sept.
 

Tesscorm

Moderator
Staff member
So the test was done around February and you just received results?? I know these results can sometimes take a bit of time but I think 6 mos is way too long! Someone dropped the ball somewhere! Just a heads up, when my son was first diagnosed, I followed up all testing. I know I may have been a pain in the xxx at times with the nurses, and you don't want to annoy them too much (fine line to walk!) but I was very nice ;) but firm in getting answers. ...I did catch errors quicker, ie at my son's second levels test, the results somehow went missing and the secretary hadn't noticed that they never came back until I was calling to ask for the results. I've just found that human error happens, so I follow up... ;)

But, now that you do have results :) , considering that it's been months and your son doesn't have symptoms, I would imagine that implies that the remicade is working??? Not to say that you shouldn't increase frequency but, if remi wasn't working, you'd likely know by now. And, good that he's on mtx, if his levels are low, perhaps the mtx has helped stop antibody formation.

I would definitely ask why it took so long to get results back though.
 

crohnsinct

Well-known member
Yep! Second to all Tesscorm said. Some people just metabolize the drug quicker than others so they need more drug. Doesn't mean anything bad.

Also, Remicade is dosed by weight i.e.: 5mg/kg or 10mg/kg. In pediatrics they often have to adjust dosing to accommodate for growth so a kid who was getting 5mg/kg every 8 weeks who gains a bunch of weight will now either need a higher dose every 8 weeks or need to shorten the interval.

Our GI said most sed GI's will choose to shorten the interval of an 8 weaker first as many kids on an 8 week interval come up short on levels or are sub therapeutic with indolent inflammation.

Sounds like you have a good GI there.
 

Maya142

Moderator
Staff member
We did Remicade every 4-5 weeks. It is pretty common for kids to need a higher dose (you start at 5 mg/kg typically and go up to 7.5 mg/kg or 10 mg/kg or even higher) and more frequent infusions. Our GI said many of her patients needed infusions every 4-6 weeks.

You may or may not go back to 8 weeks. It will really depend on your son's drug levels and how he is doing. But just needing more frequent infusions doesn't necessarily mean that Remicade is going to stop working. In fact, the current thinking is that keeping drug levels high should prevent antibodies from forming, and that will extend your time on Remicade.
 

Tesscorm

Moderator
Staff member
Sorry, I just reread when his test was done... it was likely around May or June, not February, right? In any case, still seems a little bit delayed to get results??? I think it takes about 2-3 weeks for us. But, it used to be the sample needed to be sent out to a special lab in California to be tested, not sure if this is still the case today but, if it is, perhaps that is part of the delay.
 
I'll just add to the chorus. My daughter also needed to go to every 6 weeks, and she's needed a few additional dose increases over the years, but Remicade is still working well for her after almost 4 years. It's good that your doctor is checking levels periodically and is ready to change the dosage when indicated.
 
Thanks All,

So its was 13th July first levels test was done, got call 21st Aug. about low levels so still took over 4 weeks. I'll double check what dose he was on and the levels as soon as I speak to our local consultant. Thanks for all the helpfull advice.

Its such a whirlwind to try and get head round all this in such a short space of time (12months ago initial diagnosis) He's been doing so well on the infusions we're anxious it continues to get him thur puberty which has been slightly delayed due to his illness
 
My son started on remi at 14, he is 19 know and the first probably 18 months we had quite a few adjustments and then several years of the same dosage. Puberty took off after about the first year and he caught up within a couple of years.
 
Hey All, many thanks for the support and info. Managed to squeeze us in last friday for infusion, so it was in week 6, all went well as previous infusions, LFTs raised so we've to go back this wednesday for another LFT test, Consultant thinks its most likely the MTX, he'll have Remicade levels back from the July test from the childrens hospital too. Overall
consultant was very happy, coming up on 1 yr diagnosis in october coming, he's gained nearly 27lbs and grew 5cm in that time, so all going in right direction at the moment
 
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