What next?!

[dodie74]

Well, 15 months after a right hemicolectomy my son now has inflammation going on which was detected through calprotectin test. Consultant calling tomorrow to talk about scopes and what next. His ibd nurse said that nothing is worryingly wrong, this is about proactive management. Still such a worry
He is currently on mxt injection and his bloods have been the best they've ever been...so unfair our kids never get a break. X

 

[Tesscorm]

Sorry to hear. But, often meds do need to be tweaked or switched. No experience with mtx so not sure what's possible but, perhaps just an increase in dose/frequency may help or even a change in med may quickly get it under control. But, good that it seems to have been caught early - I think it's much easier to get it under control when it's still mild or a small area, then when it's been simmering for a while! Hope you get some answers and a plan quickly! :ghug:

 

[dodie74]

Thankyou tesscorm...they had already lowered his mxt dose as his neutrophils were too low so it went back up but now with the lowered dose it may not be enough it's so difficult isn't it xxx

 

[Tesscorm]

Yes, and truly, I've been lucky... S's treatment only changed when he went from supplemental EN to remicade. It's so hard to face the change, it's almost like the dx is new again.

I know when CIC's daughter was on remi only, the GI wanted to add mtx. CIC had her daughter do a period of EEN to get inflammation under control and then remi alone was able to keep things under control from there. (She did add mtx later for but non-ibd reasons.) Maybe it's worth asking your GI if it would be worth trying a period of EEN; of course, that's if you think your son would comply.

I also have a friend whose daughter was on mtx injections for a couple of years but inflammation came back. She was switched to remi and has been completely fine since (and I think it's been about 3-4 years)! So, even if a med change is needed, it might turn out to be an easy fix.

 

[dodie74]

Spoke to consultant and it looks like adding either infliximab or humira. Will know more one they scope. I pray that one of those meds work for my boy xxx

 

[Maya142]

Sending hugs!

My girls like Remicade better but Humira is definitely more convenient. If you look around the forum, there have been a LOT of threads about Remi vs. Humira recently.

Good luck!

 

[dodie74]

The only thing is we live 130 miles from where the infusions would be done but I'd run to the end of the earth if it does the job for him and lowers the inflammation that's going on. They mentioned humira because it could be done at home. Xx

 

[my little penguin]

Ds loved remicade over humira
Humira does burn and can't be adjusted for weight
So as they grow they weigh more and essentially get less meds

Remicade is dosed by weight so much easier for growing kids
Adults it wouldn't make much difference


Hope you get answers and meds that work

 

[dodie74]

Thankyou my little penguin. Would you say infliximab would be better to start with and is it easier on the child, side effects etc etc. I'm sure he said he would stay on the mxt too but I may have picked him up wrong. X
They are thinking the inflammation is where he had the hemicolectomy as that is where it can appear again seemingly....just when we thought all was well xx

 

[my little penguin]

Remicade gave a lot skin issues for Ds - but he had skin issues prior to crohns dx so not a shocker

Remicade was just an infusion every 6 weeks so no thinking about crohns until then
Nurses spoiled Ds with junk food blankets movies etc...
One poke which also covers blood draws at the same time

humira - I give - not a trained professional
He now gets it every week and after 4 years they may have to increase it more due to his sweets syndrome
It burns and Ds used to scream
After seeing a therapist and adding lidocaine to the humira syringe
He now does better
He is used to shots ( allergy shots from are four on so not the needle stick issue )

 

[Maya142]

My girls like Remicade because they got to miss a day of school, and nap and watch TV! They usually have comfy reclining chairs for the kids and the nurses fuss over them. The frequency of infusions varies - some kids need them every 4 weeks, and others can go 6-8 weeks. One of the nice parts is that they will do blood work there - so only one stick. The flexibility with Remicade - dose can be increased, dose is based on weight, frequency can be increased - is VERY helpful.

We had to increase the dose and frequency for both my girls. Remicade also tends to kick in more quickly than Humira.

My girls much preferred the IV to the Humira shots, which burn. Humira is definitely more convenient but it hurts. We used ice, did the shot while they were watching TV and gave them a treat after the shot (chocolate, cookies, cake etc.). They still hated it but got used to it.

Both Humira and Remicade worked very well for them. They did not really have side effects with either - no increase in infections or anything like that. No skin issues for us. Some tiredness after the Remicade infusions but that might be because they were both premedicated with Benadryl and Tylenol - not all doctors do that any more.

Many GIs like to keep kids on MTX or Imuran while on anti-TNFs to decrease the chances of the kiddo building antibodies.

Good luck!!

 

[pdx]

Sorry to hear about the inflammation. We don't have any experience with Humira, but Remicade (+ methotrexate) has worked well for my daughter. I hope that whatever you choose works really well.

 

[Sascot]

Really sorry to hear that. Fingers and toes crossed whichever one you choose works wonders!

 

[CrohnsKidMom]

Dodie, my son was on MTX injections for just about 2 years when his inflammation came back (and it was more extensive than at diagnosis, although his symptoms weren't as bad). The GI switched him to a lower, oral MTX dose, and added Remicade. It has been a positive change for us. My son prefers it over the weekly MTX injections.

 

[dodie74]

Thanks crohnskidmom, been reading a lot about both meds and taking everything into consideration I think our best option would be humira. We live 3 hours from where the infliximab infusion would be and I think it would put too much stress on our family, we also have a younger child. My crohnie is 13 so once he's hard his scopes I think he should have a say as its him who has to go through it all. I was actually thinking about asking about the mxt pills especially if it will be humira, not very nice injecting 2 meds . I just hope and pray whatever med he goes on does the trick this time xxx

 

[Pilgrim]

Distance was our reason also for choosing Humira. I hope it works quickly for him. My daughter saw improvement very quickly and it is still working for her over a year later.

 

[dodie74]

Pilgrim that gives me hope, does she cope ok with the injection? Xx

 

[my little penguin]

Just realize that you outgrow humira faster
We did have much of a choice since Ds had an allergic reaction
Humira has only two doses at least in the us
20 mg pre filled syringe /auto injector for little kids
40 mg pre filled syringe /auto injector for adults .

Which means if your kiddo starts humira at 40 kg now he is getting 1 mg/kg of humira if he uses the 40 mg pre filled syringe kit
But with in a year or two he could be getting 0.5 mg/kg which typically isn't enough to hold the crohns at bay
Simply because of weight gain and growth which is huge during puberty for boys -
We are running into this now unfortunately
Ds started at humira 20 mg syringe for 3 months
Wasn't enough
Switched to 40 mg every other week which lasted one year
Then added methotrexate to boost it -that last a few months
Switched to every 10 days since he had symptoms before the full 14 days
That lasted less than a year
End of last year switched to every 7 days
Which is still not enough so they are discussing whether it's possible to increase methotrexate again or increase humira to every 5 days .


In the time of humira starting he has gained 20 pounds
And given he is 12 will gain and grow a lot more over the next 5 years
So it is highly unlikely it will last him.

Remicade can be adjusted for weight and growth so you can get the same dose even if the kid grows and gains weight

Does he see the Gi every 2 -3 months now?

Most Gi will schedule the follow up appt the same day as the remicade infusion so one trip
You check in with the Gi //get infusion /blood and done for two months

Not saying humira doesn't work
It does but growing normally causes issues with getting a full dose

You might want to check this out
Not available in the US but pilgrim get her shots done at the pediatrician/GP office

Pilgrim - didn't she have to increase from once every two weeks to once a week as well ??

 

[Pilgrim]

After 6 months we increased to weekly 20 mg dosing. We will switch up to 40 MG and go back to biweekly if she is still responding at 30 kg (about 66lbs) That's the plan.

 

[Pilgrim]

Pilgrim that gives me hope, does she cope ok with the injection? Xx

Dodie, she copes really well with the injection. I will tell you it was tough at first. The injection stings and over the loading doses she was exhausted and disoriented. By the second or third month it became more of a routine and she could go right into her day after the shot. We've experienced no side effects otherwise. We do the injection before school on Mondays and I drop her right at school afterwards where she just has a normal day.
The trick is just getting through the first bit to normalize it.

 

[Pilgrim]

Pilgrim that gives me hope, does she cope ok with the injection? Xx

Dodie, she copes really well with the injection. I will tell you it was tough at first. The injection stings and over the loading doses she was exhausted and disoriented. By the second or third month it became more of a routine and she could go right into her day after the shot. We've experienced no side effects otherwise. We do the injection before school on Mondays and I drop her right at school afterwards where she just has a normal day.
The trick is just getting through the first bit to normalize it.

 

[Maya142]

We injected both MTX and Humira for my girls. My older one is still on MTX and Humira.

They are much older now, but they were both young teenagers when they were put on MTX and Humira. The Humira shot does hurt and they didn't like it but they did get used to it. For them, since their joints started to hurt by day 6-7 (they had weekly shots), they really did know they needed the shots to feel better. So it wasn't a huge fight.

It did cause some stress, but it wasn't like they agonized about it all day. They both would be anxious maybe 5 minutes before the shot and then they'd get over it almost immediately and continue watching TV and eating their treat (we did chocolate or cookies or cake or something good to eat after the shot). It really was not so bad and it was convenient.

Both did prefer Remicade, but if distance is a big issue, then Humira is VERY convenient.

The MTX shot did not hurt much at all according to them, so they never really thought about it. We did Humira during the week for both of them, and MTX on the weekends. That way, they didn't get two shots at once.

We iced before and after the shot for 15 minutes and they said that helped. Asking questions during the shot might also help distract him - open ended questions work best, we have found.

It's true that he may outgrow Humira - kids often do - but then he can go to Remicade and hopefully by then there will be more options.

I will say that my younger daughter is quickly running out of options and it is very stressful but I honestly don't know what we could have done differently. It's just the way it is.

Good luck!

 

[positivemum]

Hi it sounds like you are going to go with humira but in case you ever need to change we are UK based and my son has been on infliximab for a year and it has been a lifesaver and game changer for him.

It is so tough and there's always waiting to trip you up when it's all going well. Hang in there. My DS was 12 at diagnosis and is now 17.

Good luck

 

[dodie74]

Thanks positivemum. Just got app for scopes next Friday so will know more then xx
The waiting is awful. Xx