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Pilgrim

Pilgrim

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I received our call from GI this morning. H's fcal is down to 1200 from 1500, so still dropping - but still high.
He wants to add a therapeutic dose of MTX - 15mg injections.
Also keeping her full dose of Humira to every other week.
I thought the dose sounded high but I'm not the GI.
Bummed for little H.
 
Sorry to hear it is still so high :(.

MTX shots are not so bad - tiny needle and pretty painless. My daughter uses Buzzy and says she can barely feel the needle at all. As you probably know by now, most parents will do them on a Friday or Saturday night so their kiddo has the weekend to recover.

Did he prescribe folic acid for her to take every day? That will help with side effects. If she does get nauseous, then Zofran also helps.

Good luck!
 
For reference ds is on 25 mg of mtx every week and humira every 5 days
Ask for the mtx WITH preservatives
Those do not burn
Folate works better for ds than folic acid so you might ask about that
Ds was started on 1mg per day of folate
And now takes 3mg a day plus lecovorin on shot day to help with side effects

He was fine with 17.5 mg only 25 pushed his limit
 
Really hope it helps! My daughter just restarted mtx (also 15mg) last weekend, and she had no side effects at all. We give it to her just before she falls asleep on Friday night, and we give zofran 2 hours before.
 
Thanks! He has prescribed something for nausea, I think he said Omestrapon? I'm not sure how much folic acid as I haven't picked up the prescription yet.
He said to keep the mtx 3 days away from the Humira and we do that on Sunday. So I'm trying to decide if I should move Humira to Monday and then do mtx Friday. It makes sense as right now she doesn't experience much in the way of side effects from the Humira.
 
Farmwife said:
I hope it helps.
How is her schooling going?
Click to expand...

It's going fairly well. She hasn't missed a lot this year so far, maybe 3 days. I think she concentrates all of her energy for school. She is very "on" in public, then at home she rests quite a lot and turns down play invitations. Like the commercial, "Never let them see you sweat."
I figure the addition of methotrexate will upset the apple cart a little.
How does Farmgirl handle school this year? 3rd grade, right?
 
I think that is probably Zofran for nausea - Ondansetron?

We also got the MTX shots with preservative and they don't sting at all. We started with 1 mg folic acid daily and then upped to 2 mg daily when they had side effects.

If you do the shots on Friday, then she should be fine by Monday so hopefully it won't affect school at all. Most kids who have side effects (and not everyone does) feel it the day after the shot.

My kiddos have been on anything from 7.5 mg to 25 mg, but they were much older than H when they started (teenagers).
 
So this is a thing where you can request with or without preservatives?

How will I know?
 
Another thing I am pondering. Was all the effort with a gluten-free, dairy free diet worth it? Should I just let her eat whatever? The supplements from the naturopath?
I'm having angst. (Again!)
 
You should be able to talk to the pharmacist and request it.

As for the diet, it's totally up to you. We go with letting my daughter eat what she wants because she lost weight on a gluten free diet and didn't get better, so it just didn't seem worth it to us.
 
I'm leaning that way. On one hand her calprotectin is still decreasing but on the other hand we're adding more meds so what's the point?
 
We were given 16mm and 13mm syringes. Can someone help me figure out which to use and why?
 
http://rheuminfo.com/medications/methotrexate/inject-methotrexate


Not sure on the 16 vs 13 mm syringe
We get the smallest needle size (27 1/2 gauge or 28 gauge needle ) in a 1 cc (1 ml ) syringe which gives 25 mg

The presevative free mtx is single use vial usually 2 ml and gets tossed after every injection
The mtx with preservatives can be used multiple times
But is only good in the US per the CDC for 28 days once the vial is punctured
Ds gets 2ml vials for this so they are only used two weeks


As far as diet ds only avoids what can kill him (life threatening food allergies) and what makes him physically sick -wheat
Everything else is hit or miss
If it bothers him we hold off for a while and try again in a few months


Ds does sometimes get mtx on humira day
We were told to try and separate it in the beginning so they would know which drug was causing symptoms or a reaction

Now that isn't an issue and humira has been stopped and started so many times as well as mtx ...
With humira every 5 days shot day always changes
 
No idea about the 16 or 13 mm syringes. 15 mg is 0.6 mL though, so a relatively small syringe should be fine. I would check with the nurse.

Are you giving the first shot at home or in the clinic?

We also got the thinnest needles - at one point we were given 30 gauge (the higher the gauge, the finer the needle) and they were so thin I was afraid they'd break.
 
Pilgrim said:
It's going fairly well. She hasn't missed a lot this year so far, maybe 3 days. I think she concentrates all of her energy for school. She is very "on" in public, then at home she rests quite a lot and turns down play invitations. Like the commercial, "Never let them see you sweat."
I figure the addition of methotrexate will upset the apple cart a little.
How does Farmgirl handle school this year? 3rd grade, right?
Click to expand...

No, second grade this year.
Our girls sound like sisters. :hug:
She's tough as nails at school but with her mommy it's rest time.
But even her teacher notices the changes and has had to drop a lot of her writing work (thanks God for her 501 in school (arthritis in the hands) and her bathroom trips are taking longer.
 
Not much help with the mtx but as far as diet we've tried pretty much all of them and we found none really helped with his symptoms and certainly did not help with his growth/weight gain. So while he generally eats pretty healthy with as busy as he is there is more fast food in his diet than I would like to see as he stops off between school, practice, work, etc. Since the remicade has worked so well for him we have not had any issues with diet.
 
I just got a note in the mail that she is low in vit D (no surprise as we're in Canada) but that she is still low in zinc. I read somewhere that the polymeric formula could inhibit zinc absorption but she's been off of it for about 6weeks. So, maybe not. I wonder which part of the system absorbs zinc? Anybody know?
JM, I think I'm going to let her eat what she wants (she's 6 and I cook everything so it won't be terrible).A lot of parents have mentioned that diets haven't affected disease.
 
Yeah, the only thing we still keep off the list is popcorn, sunflower seeds. He does eat nuts on occasion but sparingly and only a small amount. While he is still really skinny but then so is my non ibd kid he's not skeletal just tall and lanky.
 
Zinc is absorbed in the small intestine.

During intestinal perfusion of a balanced electrolyte solution containing 0.1 mM zinc acetate, zinc absorption occurred throughout the entire small intestine. However, the jejunum had the highest rate of absorption (357 +/- 14 nM.min-1.40 cm-1) compared with the duodenum (230 +/- 33 nM.min-1.40 cm-1) and ileum (84 +/- 10 nM.min-1.40 cm-1)
Click to expand...

My daughter had to have zinc supplements at one point (also Vit. D but that's pretty common). I have no idea about polymeric formulas and zinc but I do know that all my daughter's deficiencies go away when she is getting formula regularly. She gets elemental formula (Neocate) through her tube.
 
Jmrogers4 said:
Yeah, the only thing we still keep off the list is popcorn, sunflower seeds. He does eat nuts on occasion but sparingly and only a small amount. While he is still really skinny but then so is my non ibd kid he's not skeletal just tall and lanky.
Click to expand...

We would leave out the nuts and popcorn too as well as cooked corn which was a problem once.
 
Maya142 said:
Zinc is absorbed in the small intestine.



My daughter had to have zinc supplements at one point (also Vit. D but that's pretty common). I have no idea about polymeric formulas and zinc but I do know that all my daughter's deficiencies go away when she is getting formula regularly. She gets elemental formula (Neocate) through her tube.
Click to expand...
I guess it's something for us to watch then. If the level continues to drop I'll ask about returning to formula.
 
We did the first dose of MTX on Friday. She actually got excited when I injected because the shot was so easy (has Humira for comparison).
I gave her Zofran and she went to bed that night like usual. No issues.
Next day she seemed ok but went to bed at 5:30 without supper. She didn't say anything, but we found her in bed with the lights on and she slept about 12 hours.
This morning seemed fine, good appetite,took it easy today,but went to bed about 1/2 hour early (7pm).
This is normal stuff for Mtx?
Also she's been eating well since we reintroduced gluten and small amounts of dairy but her weight seems to still be slipping. Anyone have this happen?
Thanks again.
 
Typically mtx for ds starts with fatigue and dry mouth 12 hours after the shot so we give the shot in the am so he can sleep all night
Also use lecovorin at the 12 hour mark and then at the 24 hour mark this helps


As far as eating and still losing weight
For ds that was prior to dx when things were out of control
He could eat 2600 cal at age 7 and still lose weight
Added in kids boost and the weight loss would stop
Eventually kids boost wouldn't work either and he was scoped and dx
Since you know she is fkaring
I would assume it's still a bad flare
Mtx takes 8 weeks to work and help
 
It could definitely be the MTX. My younger daughter had side effects for 2-3 days after the shot.

Sometimes kids get used to it, so she might feel better after a few weeks of shots. However, fatigue is a pretty common side effect and some kids are just very tired the day after the shot.

My older daughter still sleeps in the day after the shot and takes it easy that day. That's why she likes to do it Friday night - she sleeps through most of the side effects and is just tired the next day and sometimes a little nauseous. She has been on MTX for years now.

Leucovorin did help us too but for some reason rheumatologists seem to use it more than GI's. I don't know why. It's folinic acid and in much larger doses is used as a "rescue drug" for cancer patients on MTX (who are also on much higher doses).

I would also assume the weight loss is just from inflammation. An FC of 1200 means that there's still a lot of inflammation.

Is she still drinking Ensure/Boost? If not, could she start to keep her weight up?
 
I have hesitated to put her back on formula when she is eating so well but it is probably the right thing to do.

I will ask about the Leucovorin.
 
It's not either or
You can have formula in addition to her new foods
We did breakfast then formula afterwards
So food first and formula as an extra snack
 
We were doing 1-3 per day in addition to food but noticed when we removed it she started eating less sweet food more veggies and variety. Not impacting disease but just was nice to see.
 
Will she drink the shakes as a drink with her meal? Downside is the shakes can be filling on their own, so might impact the amount she eats??? Am only suggesting this because when my kids were young (pre-dx for S), I used to take one Carnation Breakfast shake, dilute it with milk and give each of them half the Carnation with their breakfast. I did it only to boost their vitamins/nutritional intake... but they thought it was great that they got chocolate milk every day! :lol: Perhaps you can try something similar by diluting half a shake for each meal? She'd end up having one and a half shakes per day??
 
Thanks Polly. We had the 2nd mtx tonight and first week with Humira as combo on Monday. I hope your daughter gets some relief soon, too.

Tesscorm, she has asked for Ensure each night before bed over the past few days. She is still eating well. I'll see if she starts gaining again in a few weeks.

I am wondering about her low albumin. The GI is watching it, and is ordering an ultrasound of her liver in the spring when we go for the next appointment. I thought the albumin was just a bowel absorption thing but now I wonder if he thinks it's a liver function thing.

Has anyone dealt with this?
 
Albumin is definitely a liver test. Low albumin can indicate liver stress or could just indicate inflammation. Hard to flesh out the real cause given you know she has active IBD inflammation but she also just started on mtx so it could be her body adjusting to the new med. This is why I mentioned to you that testing is frequent at the beginning to watch how the liver is handling the mtx.

T's albumin dipped at the beginning but came back up as her body got used to the drug.

I would hope the GI is going to pull another test soon to monitor because if it is the mtx then adjustments will have to be made. I am not comfortable with waiting until spring.
 
Albumin can also fall with malnutrition. My daughter had low albumin when she was very underweight - she was monitored very carefully (weekly blood work).
 
Sorry guys, I wasn't clear. When we went in last her albumin was very bottom number of normal then dropped a few more points before starting MTX.
I think the number we're at is 32. So he mentioned this liver ultrasound before we started the methotrexate.
We're getting weekly labs for the first month of MTX. Then every other week and so on.
She's not skinny but she's not really been gaining for a few months.
I'm just putting two and two together that this might be a liver issue. It just takes me awhile to process negative stuff.
They called last week to discuss labs. It's usually something bad when they call. But everything was ok except the albumin. So, I'm worrying.
 
Grace's low albumin was due to malnutrition.
She had it for a year or so.
Her numbers were between 30 to 25 for that year.

But given what your girl has, I see why it's good to be careful.
 
I'm glad she's being monitored carefully.

My kiddo's albumin was also in the range for quite a while. It went back up once we started tube feeds.
 
Thanks Maya, that is good to know. I file these ideas for what has helped other kids so I have something to work with if something needs to change.
 
We have a history of bad livers in our family so I totally understand the worry. However, there are at least three other tests that they generally routinely run that would also indicate liver damage. AST, ALT and Alkaline phosphatase are also part of the Comprehensive Metabolic Panel and are used to evaluate the liver. If only one number is off try not to worry too much. It could simply be inflammation, mal nutrition or adjustment to the mtx. In other words, do as I say not as I do.
 
Good luck with that! I wouldn't worry but for this ultrasound he has put out there regarding her liver. But it could just be a precaution. The other liver numbers are fine as far as I know.
Thanks again CIC.
 
Just to update here. Her albumin kept dropping and so she started another course of Entocort which after a few weeks has stabilized her numbers. Labs are looking much improved.
We're on our 5th week of Methotrexate injections at 15mg and she takes Zofran on injection day. That usually manages the vomiting and nausea for the first 24 hours. But 24-48 hours after injection she has been vomiting. We have permission to use Zofran on the 2nd day now so hope that will help this week.
I won't know if MTX is helping until we taper Entocort in mid February.
The other interesting thing I noticed is that she has been dreading her Humira shots more. Now that she has "easy" shots, the difference is amplified!
 
Lecovorin can be taken 12 hours and 24 hours after the mtx injection to help with side effects
Might be worth asking about
Ds just switched back to mtx pills last night from injection since the high dose mtx(25 mg) injection did not slow down his seeets syndrome and was just making him sick .

Sorry she needed more entocort
Are there plans to switch to another biologic ??
 
I would also try Leucovorin. It's folinic acid and is used as a "rescue" drug for cancer patients when MTX is given in much higher doses. For whatever reason, rheumatologists seem to use it more than GI's but it's worth asking about.

We gave it 12 and 24 hours after MTX. It definitely helped my daughter.

We also gave Zofran for 2 days after MTX, sometimes more than once a day.

Good luck!!
 
my little penguin said:
Lecovorin can be taken 12 hours and 24 hours after the mtx injection to help with side effects
Might be worth asking about
Ds just switched back to mtx pills last night from injection since the high dose mtx(25 mg) injection did not slow down his seeets syndrome and was just making him sick .

Sorry she needed more entocort
Are there plans to switch to another biologic ??
Click to expand...

Good question. She isn't building antibodies and her levels were fine when we tested (in June at scopes which showed active inflammation).I think he wants to see if methotrexate will do whatever the Humira isn't doing. He hasn't said too much about the next step. He could still bump her Humira up to weekly or even 5 days (like your ds) and then could still play with the mtx dosage.
H just started to use the lollipop! It was an accident but glad there's science behind it. We'll add humming. Thanks for the idea.
 
Maya142 said:
I would also try Leucovorin. It's folinic acid and is used as a "rescue" drug for cancer patients when MTX is given in much higher doses. For whatever reason, rheumatologists seem to use it more than GI's but it's worth asking about.

We gave it 12 and 24 hours after MTX. It definitely helped my daughter.

We also gave Zofran for 2 days after MTX, sometimes more than once a day.

Good luck!!
Click to expand...

They told us not to give her more than one dose of Zofran in a 24 hour period - but I don't know why. They said we could break it in half to make the med more spread out though. As in two half doses per day.

If things don't improve I will ask about Leucovorin. Thanks!
 
Zoffan might be a weight thing
Ds can take it every 8 hours
It gives him constipation dose try not to take it
 
It's still early to call mtx a no go. It can take up to 12 weeks for it to build to therapeutic levels. Glad the Entocort seems to be helping. Hang in the mama! Your doing a great job!
 
It must be because she's so little :(. Poor H!

My daughter was allowed to take Zofran 3 times a day - and is still allowed to. She doesn't have any side effects from it.

Does H have the kind of Zofran that dissolves under her tongue? We found that worked better (and faster) for my daughter than the regular pills.

Poor kiddo. We had a very hard time with MTX, but it worked REALLY well for my daughter.

With shots, we found that open ended questions help with distraction. We also used to do Humira while the girls were watching something on TV. Buzzy helped a little but more for the poke and not so much for the burning with Humira :(.

I was told at the Juvenile Arthritis Conference that the new Humira formulation was supposed to be released in the US (and I assume Canada) in early 2017. I hope it happens soon!
 
I heard new Humira without the burning citric acid could be available in US as early as late Jan. Wonder if it takes a new script or they try to use up old formula first? Would love for little Pilgrim to catch a break in some way!
 
We were told the distributors need to use up the old stock first
No new script required -same stuff
Given humira is good for over a year
It might be a while even once it gets here
 
We were told the same thing last summer - they will use up the old stock first, but they were expecting people to get the new stock in early 2017.

At least, that is what the plan was back then.

I wish they would at least give little kids the "no sting" formula.
 
This week she vomited on injection day (methotrexate) even though she took the zofran. Then she was awake for 2 hours afterwards with upper right quadrant pain, which she indicated was toward her back. We ran labs today so I am waiting to see if anything shows up. The pain was unusual. Does anyone know if a med issue would show up on labs three days later?
 
Didn't she have pancreatitis with aza or 6-mp?
Have you called her GI since it's new pain /vomiting for her ?
Given her history and location of pain -always good to touch base with the staff since what they look for may not be in her routine labs .
 
my little penguin said:
Didn't she have pancreatitis with aza or 6-mp?
Have you called her GI since it's new pain /vomiting for her ?
Given her history and location of pain -always good to touch base with the staff since what they look for may not be in her routine labs .
Click to expand...
Yes! She did have pancreatitis with aza and while this pain is nowhere at that level it could be escalating. So I did call and leave a message with my concerns but they may still wait on the lab results to call back. I'm not injecting on Friday until there's been contact.
 
My kiddo also vomited on MTX despite Zofran. It does happen - there are some kids that just don't do well on MTX. We tried EVERYTHING to make MTX tolerable for her - we even tried 4 different doses, but none of it worked.

Given her history of pancreatitis, I'm glad you called the doctor. I hope they get back to you soon.

If it isn't pancreatitis, maybe decreasing her MTX dose might help.

I looked up pancreatitis with MTX and drugs.com lists it as an uncommon side effect (0.1% to 1%).

Sending hugs :ghug:!
 
Tonight she had her injection. We were told to up her folic acid to 2mg on the days she takes it. We were also told we could split her injection and do two smaller injections. We didn't try that. Has anyone split doses with injections?
I mentioned my concerns about a repeat of acute pancreatitis and while the nurse was dismissive she didn't think it would be a problem adding it to labs next time.
If she has any pain tonight I'm taking her to emergency to be evaluated.
 
Yes! We have actually done that with both pills and injections.

We've even done injections (two smaller doses) on consecutive days for my younger daughter.

Unfortunately, it did not work for her. MTX just made her too sick - extreme nausea, vomiting, dizziness that lasted two days.

We were able to stick with it a while by reducing the dose (we started at 25 mg, went down to 15 mg).

Upping folic acid did help her though. We gave her 2 mg daily.

Leucovorin might be another option - you'd have to ask specifically about that. GIs tend to use it less than rheumatologists.

We were also told Benadryl might help with nausea. Not really sure it did, but we'd give it to her at night with the injection. She certainly slept through the night with it.
 
Does she take daily folic acid as well?
Ds takes 2 mg of folic acid every day including shit days
1 mg in the am and 1 in the pm
We were told if he did pills we would have to give them over two days (only at 25 mg not the lower doses )
Never told to split the shot into smaller doses
Can you ask the doc about giving leucovorin ??
It really helped Ds at least with some of the injection side effects .

Hope things go well
Fingers crossed
 
Benadryl is known to help with nausea for other things not just mtx
It given her age and size I would ask the doc first .
 
With the injections, we tried 12.5 mg injection in the morning and one in the evening (total of 25 mg). That did not work at all - then she was just nauseous all day.

So then we tried two consecutive nights - Friday and Saturday. That was a little better.

We were pretty desperate to get her to tolerate it since it helped her joints so much.

Edited: Yes, definitely check with your doc about Benadryl. I'm not really sure it did much besides keeping M from waking up at night.
 
Last edited:
MLP she was taking 1mg of folic acid each day and now upped to 2mg. I will ask about Leucovorin next week if this isn't better.
Maya I will also ask about doses split and 24 hours apart. She "doesn't mind the extra needle" if she feels better-from the mouths of babes.
Benedryl. I'll ask about that too. Thanks to both of you.
 
The other thing I'd ask if reducing the dose might be an option, if splitting the dose into two shots does not work.

She is one tough kid!

Good luck - I hope H feels ok tonight :ghug:.
 
Oh and for ds folate works way better on side effects than folic acid
His system for whatever reason tolerated pills well but not shots at all

Hugs to you and her
 
Grace didn't mind the needle either but she tired humira first.
Sooooo........ anything compared to that was a cake walk.

No advice, she tolerated mtx well.

Hugs
 
Maya142 said:
How did she do with the shot this week Pilgrim? Any side effects?
Click to expand...
She did much better! She had taken the extra folic acid on Thursday and the shot was Friday. She woke up in the morning and she was so happy and relieved not to have vomited in the night. We had six weeks of nausea and vomiting on the weekends of mtx. This was the 7th week.
She was tired the day after but she said she could "live with it".
 

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