Starting Remicade tomorrow...

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cassimw

cassimw

Joined
Nov 5, 2015
Messages
117
My daughter was recently diagnosed with Crohn's. She also has a fistula. After undergoing a bunch of tests and getting a second opinion on treatment options, she has her first Remicade infusion tomorrow. Hoping for the best.
 
I hope the infusion goes well, and that your daughter starts to feel better soon!
 
Wishing your daughter (and you!) good luck with the infusion....I agree with my little penguin - the first infusion was harder for me than my daughter :/

Let us know how it goes!
 
Good luck! I'm sitting at my son's infusion right now, admittedly a little bored because I forgot my book. Bring stuff to do!
 
Hi. I remember how worried/freaked out I was for the first infusion. I watched youtube and I asked a hundred questions here. I'm sorry you are going through this.

It will be okay.

My son, too, had/has (?) fistula with his crohn's. Best to hit it hard with Remicade. I hope this drug is the one that gets her into remission.
 
We're home. She did fine and there were no problems. MLP - you are so right - I was way more worried that she was. She took it all in stride. I'm feeling better now that it's over. Although they said that when people react to the meds it's usually the 3rd or 4th infusion though - something to look forward to worrying about later...

Thank you all for your support - this group is fantastic!
 
So glad it went well!! Hope you some progress soon.

Fwiw, my daughter has been on and off Remicade 3 separate times. It's definitely NOT recommended but it just sort of happened. She never had any reactions or any side effects!

Good luck!
 
cassimw said:
We're home. She did fine and there were no problems. MLP - you are so right - I was way more worried that she was. She took it all in stride. I'm feeling better now that it's over. Although they said that when people react to the meds it's usually the 3rd or 4th infusion though - something to look forward to worrying about later...

Thank you all for your support - this group is fantastic!
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Wishing her well always.
 
Glad all went smoothly, my son had his infusion on Tuesday and slept through the whole thing (he'd been up late with friends the night before). It has become so routine for him that he is able to relax and have a little nap.
Boring for me but luckily I had another forum mom whose son was getting his infusion in the next room and we got to have a chat.
 
Just an update... My daughter had her second Remicade treatment this week. Before the treatment, they drew blood. The labs came back as follows:
* all markers for inflammation have "normalized"!
* still very anemic (adding iron now)
* slightly elevated liver enzymes

She had been on EEN for 5 weeks prior to the blood draw, so I'm not sure if that caused inflammation to go down or Remi. Wanted to mention it for those considering either.

Retesting blood in about a week to see what's going on with liver. Doc isn't sure if it's due to Remi or something else. She wanted to add 6-MP, but is holding off for now to see what's up with liver. This aspect has me concerned. Crossing fingers.
 
That's great news about the inflammation markers!

Some of my daughter's liver numbers went up suddenly (but not drastically) at one point in the spring, soon after we added MTX to her Remicade. They haven't gotten higher in the 6 months since then, though. So I wouldn't worry too much about the liver enzyme numbers until you can see what the trend is.

Is your daughter going to get iron infusions? Those work much more quickly than oral supplements.
 
Do you have copies of her labs to see what her exact results were? When you say "liver numbers" I'm guessing you mean ALT and AST? Things are usually okay if they are just slightly (2x greater than normal) elevated. Glad you are retesting though.
 
Thanks everyone!

pdx: Yes, trying not to worry until there is more info. I had no idea about iron infusions - that's interesting! Doctor called iron script into the pharmacy and I still need to pick up, so I'm not sure what dose is or anything yet. My daughter tried iron supp. when we knew she was anemic, but didn't know about Crohn's and it upset her stomach and we discontinued, so I'm not sure how this second attempt will go. Doc said if it upsets her stomach this time, we'll discontinue - but she didn't say what we'd do then.

DanceMom, I don't have her labs. I don't even know the Remi dosage. I feel a lot less informed than most of you parents! All I know is what the GI told me - liver enzymes were slightly elevated. She didn't seem overly concerned, I think she just wanted to make sure we didn't add another med if the liver was being affected.
 
Yes, she probably didn't want to muddy the waters with the 6MP. Great news about inflammatory markers being down. I hope the iron goes well.
 
I would ask for a copy of all her records and start a spreadsheet. What a doctor may say is "normal" you may realize over time is not necessarily normal for your daughter. For example, my son tends to have normal platelet counts, but they are on the low side of normal and sometimes slip below normal, but then come back up. From keeping all his labs in a spreadsheet, we also realized that CRP is actually a good indicator for him. I also know his liver numbers can bounce around a couple times a year, but always fall back to normal within a month. It's just a nice way for you to sort of keep an eye on things.

I also take picture of my son's Remi bag which lists the dose, etc. I did use it once when his GI thought he was getting a higher dose and my pic proved that he wasn't.

I hope the iron supplements work. You know about the black poop they can cause, right?
 
Mehita- Good suggestion about the records/spreadsheet. Thanks for sharing about your experience with your son - that's a good example of how everyone's "normal" is a bit different and a smart thing to keep in mind.

Good tip about taking a pic of the Remi bag too!

I think I knew that about iron/poop from back during my own iron supplement days, but I had forgotten. Thanks for the reminder ;-)
 
Definitely take charge of your daughter's care! Ask for lab results, verify all medications given, etc. Health care professionals do make mistakes and sometimes we, as parents, are able to catch those mistakes before there are negative consequences. Meds are given in error, abnormal labs are overlooked, tests are ordered but never run, etc. We should all have an honorary medical degree after caring for our children!
 
Typically doctors prescribe iron supplements first and if they don't work or aren't tolerated, then do infusions.

My daughter did a couple of weeks of iron supplements but her Ferritin did not rise and she felt very nauseous and awful, so we went to infusions. They worked well and she felt better immediately.

Definitely make sure you get those lab results - a spreadsheet is a great idea, that way you know what her normal is.

Glad things are getting better!
 
Ferritin sometimes acts a marker of inflammation. So a drop in the ferritin number may not mean that the iron lower are actually lower.
 
Don't feel bad about not knowing these things. I have met parents in the infusion center who have never been on a forum, have no clue what their kids CRP, Sed Rate or Fc is...have never even heard of FC! They are off living their happy normal lives.

I sit somewhere in the middle. I know what the tests are so if doc calls and tells me this or that is up or down, I understand what that could potentially mean but I do not get results. I go by how my kid is feeling and what is going on. I know what isn't normal for her. I let the docs worry about the blood results as with chronic conditions a little movement one way or the other is tolerable but as a lay person I have no idea what is or isn't tolerable. Plus I know me...I get results and I am off to google every little movement one way or the other so I guess it is also a bit of self preservation. But if you could strike a balance go for it. I know a few moms here have identified normal for their kid that didn't exactly fit in the lab ranges and that is a good thing...I am not that patient or advanced.

You can also just look at the IV pump...a display will run across telling you how many mg/kg she is getting.

I have caught a few things in my day..ie: labs not run or certain follow up that didn't happen but none of it earth shattering.

I do however believe that anyone inpatient should have someone with them 24/7 ..that is where most serious mistakes happen.
 
Oh and my younger daughter has had a few liver numbers be off on occasion and we have rerun labs and she has been fine. I think the important thing is that the doc is rerunning them before proceeding...good doc.

With O labs have been off on occasion but since she was getting infusions and labs done every 5 weeks no need to tell me and they have always resolved themselves.
 
crohnsinct said:
Don't feel bad about not knowing these things. I have met parents in the infusion center who have never been on a forum, have no clue what their kids CRP, Sed Rate or Fc is...have never even heard of FC! They are off living their happy normal lives.

I sit somewhere in the middle. I know what the tests are so if doc calls and tells me this or that is up or down, I understand what that could potentially mean but I do not get results. I go by how my kid is feeling and what is going on. I know what isn't normal for her. I let the docs worry about the blood results as with chronic conditions a little movement one way or the other is tolerable but as a lay person I have no idea what is or isn't tolerable. Plus I know me...I get results and I am off to google every little movement one way or the other so I guess it is also a bit of self preservation. But if you could strike a balance go for it. I know a few moms here have identified normal for their kid that didn't exactly fit in the lab ranges and that is a good thing...I am not that patient or advanced.

You can also just look at the IV pump...a display will run across telling you how many mg/kg she is getting.

I have caught a few things in my day..ie: labs not run or certain follow up that didn't happen but none of it earth shattering.

I do however believe that anyone inpatient should have someone with them 24/7 ..that is where most serious mistakes happen.
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I have learned from this forum.
 

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