The Little Farm Girl and onto Remicade

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Farmwife

Farmwife

Joined
Apr 28, 2012
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I never thought I would have to type this but here goes.

Onto Remicade.

The infusion office called and Monday is the day.
She will have Tylenol and Benadryl before and labs done.
The nice nurse said they want to keep grace most of the day:eek:
I know this is to watch for a reaction but it still a shock.


So I'm dancing between anticipation of this drug working and
shear fear of the rare side effects, allergic reactions and or that this drug will fail also.

My darling angle is so scared, so very scared of the IV and there's no calming her.
I told dad to empty the bank because its going to take a large bribe to deal with this one.:yfaint:
 
I hope it's her miracle! I'm guessing you've tried Emla and small needles? The nurse also uses heat packs on M's arms to make her veins easier to stick.
:goodluck: Bribery is always the answer ;)
 
Good luck
The first couple infusions take most of the day regardless because the rate is so slow .
Distraction distraction distraction
Head phones with ipad new movie playing ..;)
 
For young ones the Buzzy Bee helps with IV's. I also liked when they did below the inside of the elbow instead of the hand... And I always would ask, "Who is the best at putting in an IV?" Some would say, "I am" and some would excuse themselves!! :) But in an infusion center, that's all they do all day. So they are usually all good in those places. She's used to Humira that burns like none other... Maybe she'll be pleasantly surprised that the IV is better? Hope so. Just a heads up; when they collect blood samples before hooking up sometimes we'd see blood. That was scary when my son was little. So we'd be doing the buzzy bee and looking in an Eye Spy book. Distraction!!
 
Poor girl, and poor mom trying to console her. I hope the nurses are super nice there and can put her at ease. Good luck for the Remicade, really hoping it works great!
 
I hope the day goes smoothly for you, and Remicade works wonders for her. Our prayers are with you both for the day!
 
Does your hospital have a child life specialist who can help with the IV? That is stressful for both of you. Hope all goes well for your little girl.
 
Hopefully remicade is the answer and your girl feels better soon. Make sure to take a book or something you can do to distract yourself when she sleeps, snacks and drinks for both. Sending Hugs.
 
Thanks everyone.

how much Remicade does your child receive?

I thought the nurse said 125mg or 150mg. Does that seems right?
 
Remicade is usually mg/kg. So divide the amount by Grace's weight in kg. Most doctors start at 5mg/kg. Some doctors will start a bit higher (M started at 6mg/kg).
 
The Rheumy nurse said it will be a 100ml (milliliters).

Maya I just didn't want to faint when I saw the size of the bags.:D
 
:lol: Honestly Remicade, in some ways, is easier than Humira since the nurses deal with everything! Try not to worry too much, sending hugs!
 
:lol: Never even thought about it that way, ie size of bag. :)

But S gets 5 mg/kg too.
 
The bag was larger than I first expected so it must be mixed with saline - it was infused very slowly at the beginning then they increased the speed the longer he sat there. I think it was slow the first 2 hours then faster the last hour.

My son was hysterical for his first IV but the "freezy spray" and distraction worked so well that by the time his first infusion rolled around (3rd iv ever) he was totally calm and still. He puts on headphones and watches a movie and can't even tell when they are doing it.
 
Yes, at our Children's Hospital kids take the IV pole to the bathroom. At one of the other hospitals we went to, the nurses would disconnect you from the IV if you wanted to go the bathroom which was nice!
 
At an infusion room they make your kid feel special. Bringing in movie lists to pick a movie. Or the Wii... or XBox... or even an Ipad! And then the menu comes. My son orders something even if he just had lunch. On our Menu there is a large selection. Last time he had just had lunch so he ordered 2 oranges, chips, and breadsticks. The nurse was like, "Coming right up!:)" Grace will do good. And 100ml is a small amount. The Vedo is mixed also with liquid and its 300ml. The bag is little. Don't worry too much. After doing Humira, you and Grace will Love the change. In our house, Shots were not a fun night.
 
A doesn't mind her infusions and swears it is better than the Mtx injections. If Grace has been doing Humira this should be a breeze for her.

We weren't offered a menu, but I bring snacks or hubby runs downstairs to the cafeteria. A says "hunger" is her side effect, lol. She brings her computer or tablet and last time we brought Uno. We take silly selfies and send funny texts to people. We find ways to pass the time. She unhooks her own IV pole and will dance in the doorway (it is mostly glass) to entertain anyone who will look at her. She is in no way tied down or restricted, lol.

One thing to keep in mind....you and Grace may see some very sick kids at the infusion center. Before going A and I had a chat about what to expect (bald kids, kids in wheelchairs, etc.). I didn't want her to be shocked or concerned that she may experience the same thing. I let her know that kids come there for different reasons and receive different treatments. Didn't want to worry her needlessly.
 
Our place reclining chair that is stuck in one place .
Bathroom - they unhook you.
Tv monitor at each chair to watch movies.
Rockers for the parents .
Not sure on the food since DS had food allergies at the time so we brought our own snacks.
Be sure not to bring anything too messy ( Cheetos ) big no. No
Cheese everywhere just saying ;)
 
I forgot to add this! Have her wear comfy clothes. Whatever you have on you'll have on the whole 3 hours!! Once Brian wore a hoodie. He forgot to take it off before they put in the IV and so he had to wear it!! :)
 
Hi Farmwife!

For my little girl the worst part is the needle to connect the IV. As soon as it's in the crying stops. We have her infusions done in a hospital. They have a child life specialist and the peds nurses are so nice. Peds procedure area has so many activities for the children. As long as everything goes smoothly I bet your daughter will find it kind of fun and not so bad.

The Remicade bag is about the size of a saline drip. Once you get to the facility the pharmacy department will mix her batch. I think Remicade is powder form that is mixed with saline.

I hope this drug works wonders for your daughter. I know she has been through so much. Bless her little heart! My daughters ulcers were 95% healed after her third infusion. October will make #5 for her. The gastro was highly pleased and so were her father and I!

Keep us posted! Monday we'll be thinking about y'all! ;)

~j
 
FW,
I am praying that remicade is her miracle! I also second the reccomendations to get her a buzzy bee. People swear by them. Also what helped Caitlyn is the nurse tells her to blow out the birthday candles. She takes a deep breathe and blows out at the same time they stick in the needle. Cailtyn says it really helps her. Good luck and keep us posted!
 
Remicade comes in a power form so it has to be reconstitute with sterile water and sodium chloride just before infusion. I believe is in a 250 ml bag, smaller than the saline bag. She will have blood draw before infusion, then a saline IV and then it will start with remicade infusion. I believe it starts at 5 or 10 for some time and increase little by little to 20, 40 etc. Most likely she will have a blood pressure arm cuff to monitor every 15 min. or so. We used to be in a closed room so we did not see any of the other kids. Now is a reclining chair but it has curtains that we can close. She has to be tested for TB prior to infusion day.
 
Max was on Remicade for a year and a half ,before it stopped working.Way less pain than Humira.The Emla works great.His stomachaches went away the day after the first treatment,it was fantastic.My son loves hospital food,what does that say about my cooking?They let him order whenever and however much he wanted.Definately,ask for a more experienced nurse to do the IV.We had some bad ones,and I wish I would have spoken up sooner about that.And,after a while they get used to getting IVs.Bring some good movies.He was able to bring the IV pole to the bathroom.Good luck with everything.
 
Thanks everyone.


grace still having bladder issues and are getting worse :)ywow:30-40 trips a day). Now she has to push to urinate.

Still no pain, color or smell when urinating.

has this happened to your kids?
 
Did you mention if she has been looked at for the bladder issues? That sounds truly awful. Poor little sweet kid.

H has frequent bladder infections, but nothing so bad as 40 trips a day. There is a drug called Pyridine (If I remember correctly) that can help the bladder stop spasms while you are waiting for antibiotics to kick in - if it is a bladder infection. It is quite a relief.
 
M has been having bladder issues recently...always has to pee. She just mentioned it to me last night and I couldn't help but think of Grace. She has no other issues - no pain or burning (but peeing feels "weird sometimes"). She's definitely not going 40 times a day though.
 
Hi farmwife hope remicade works for grace. The infusion takes a while so bring books tablet etc to keep her occupied. Lucy was able to walk around during the infusion which was good. Bring a book for yourself too! Grace shouldn't have any problems with the needle she is used to getting a humira shot which is really painful so I reckon she she won't even flinch for the Iv. Good luck
 
The doc as upped her prednisone and wants a 12 hr catch. I'm to call tonight with the update and then it will be decided if she needs to go to the hospital.

So I will be spend the day at home catching urine. how fun.:lol:
 
Poor thing. Hope they can do something to help, must be so frustrating having to go so often. Good luck for the Remicade on Monday.
 
We were told optimal dosage 5-10ml/kg, jack started on the 5ml/kg and didn't make it the full 8 weeks at that dosage so they upped it and went to 8 weeks and we are nearly there just very minor symptoms starting at week 7 so we'll be doing the 10ml next time. He started at 20 ml in January went to 400 and next time we'll be doing 500ml. Ours starts at a rate of 10 and they bump it every 15 minutes until we get to full speed but the first few times it was a lot slower.
Hope it really works wonders for her.
 
:yfrown: Princess Prednisone Mood rages have started.:yfaint:
I caught her throwing a folding chair because......it was stuck of course.:ylol:

good news is the joint pain has eased but no help for the bladder yet.
 
:soledance:
All done.
She did good and was brave getting her IV.:biggrin:

but...............................

The nurse turn her pump of remicade up and her lower back started to hurt....a lot.:ywow:
Next thing I know 3 nurses were around grace turning off her pump,
holding her hand and asking her if she's ok but grace wasn't answering ( I stopped breathing at this point).
About 5 minutes later she was back to talking and smiling.:yfaint:
So they started her again at a lower rate and kept it there.;)
Only the last 5 minutes did they pump it back up and this time no reaction.
The nurses were great and the senior nurse said back pain isn't a normal sign of an allergic reaction to this medicine.

have you ever heard of this type of reaction to Remicade?

Also her blood pressure was dropping before this time but went up after this episode.

So now we wait to see if its made a difference.:hug:
 
I hope the next dose goes more smoothly! Silly question but this back pain is different from her regular back pain that she sometimes has right?
 
Never had that happen but DS did have two reactions.
Remicade normally causes the bp to drop as far as i know
Dropping bp can be a sign of anaphalaxis as well.
 
Maya142 said:
I hope the next dose goes more smoothly! Silly question but this back pain is different from her regular back pain that she sometimes has right?
Click to expand...

Maya this was more sharp and above the hips. It went completely away once they lowed the dose. however I thought maybe she was to long in sitting but she had been up and down to the bathroom countless times.
 
Pilgrim said:
How is her bladder?
Click to expand...


I called the Urologist when we got home and we have an appointment next month.

They also put grace on a med called Ditropan, anyone heard of the drug?

She went at least 15 during remicade. The nurse put her next to the bathroom. :thumleft:

:ymad:Someone tell me how in Sam hill do I put multiple quotes in one post.:ymad:
 
Sorry things did not go smoothly. I think we were in parallel universes yesterday. H had his infusion yesterday and also experienced low back pain. It came on quickly and in a small area. They gave him a heat pack since they thought it was cramping related to sitting too long. The pain got worse. Dr said it could be a side effect rather than reaction. If I understood correctly, side effect is when body is not liking the medicine, reaction is when body is rejecting the medicine. Apparently it is a rare side effect that they both experienced yesterday.
They stopped the infusion. Gave Iv benedryl. When pain subsided, they started infusion back up again, with no issues.
The infusion nurses suggested to contact his dr and discuss what occurred. H mentioned he had back pain last time but not as bad as this time. He did not mention it before.
Hope the remicade works well for her.
 
Back and joint pain is a side effect of remicade but I never heard it happens during infusion. I really hope is because of the chair or the position they were and not because infusion. Usually my daughter's BP drops during infusion specially when they increase the speed of IV. From what I have been told by nurse is that is not supposed to drop more than 20 points from the BP start point. When BP drops my daughter starts moving, eating or play games on the computer and it goes up, if not, they lower the speed rate of infusion. Hopefully next time is better. Sending Hugs.
 
:smile:Sorry I didn't mean to make it sound like we had a bad time.
Except for that little bump we had a good time.:hug:
They spoiled my dd and were all very sweet and
even took extra time with me to explain step by step what was happening.


Now onto the good news, half the bathroom trips today.:eek:
She still went pee about 15-20 times but hey that's better than 40-50.
I haven't given the new bladder med because I want to see if it will go away on its own.
I wonder could one treatment make a difference already.

:yfaint: the joint pain is still bad and now allergies kick in, she's starting to itch. I hate allergy season.:ymad:

That's good to know that back pain could be a sign of a side effect.

Momoftwinboys, why do our kids have to be the rare side effects.
We really should play they lotto together.:lol2:
 
My son showed positive signs within 48 hours when it came to cramps.(Way back when-- when things were simpler) Are they worried about giving her Remicade if she has a bladder infection? Did I miss that she doesn't have an infection? Sorry if I did.
 
Brian'sMom said:
My son showed positive signs within 48 hours when it came to cramps.(Way back when-- when things were simpler) Are they worried about giving her Remicade if she has a bladder infection? Did I miss that she doesn't have an infection? Sorry if I did.
Click to expand...

She's never had a UTI all this time.
Its been almost a year off and on but never a UTI.

Ive had three docs say its classic Interstitial Cystitis (IC). Its rare in kids but does happen. We meet wit the Urologist next month to confirm.
I'm just hoping the Remicade will take care of all of it.:yfaint:
 
One treatment made a difference for my son. Second infusion he was feeling pretty darn good. Third infusion and we had clinical remission. His inflammation markers were normal within a week of his first infusion.

I hope it keeps working for her!
 
My friend's teenager has Interstitial Cystitis. She had to do physical therapy (for pelvic muscles I think?) and also worked on stress management (not sure your 5 year old is very stressed though!). Anyway, it worked for her and she's doing very well, no meds needed.

I hope Remicade is Grace's miracle drug! Fingers and toes crossed!
 
Hi Farmwife, I learned something new from you today. Before my IBD symptoms became severe, I developed problems with my bladder. I was just going through the diagnostic process when my IBD symptoms became so severe that they suggested that I get the IBD symptoms under control first and then return to them for more testing. However once my IBD went into remission, the bladder problems also resolved!

I remember reading about bladder problems when I was having symptoms and thinking that none of the diagnoses seemed to apply to my situation. After reading your post above, I went to the forum Wiki to look up interstitial cystitis and I read the article about IC being more common in people with IBD. I now realize that IC is what I had at the time and I am so grateful that it resolved. Thank you for clearing up a mystery for me.

May Grace's new medication soon put her digestive and bladder symptoms into remission.
 
:( Well I had to give the bladder meds. The last 2 afternoons have been horrible.
The good news is the med let her sleep.:dance: she was getting up multiple times at night.
however the med doesn't seem to work during the waking hours.:voodoo:
Also I've been researching about diet playing a role in IC. :shifty:Ill be watching to see if any food irritates her bladder.

I will say she seems more energetic. She even had the teacher wore out.:redface:
 
What is the bladder med? I probably missed it in the thread.

That sweet girl needs a break! Hopefully Remicade will be her ticket.

J.
 
Ditropan is the med J.
Of course I was able to get grace off of Miralax, now I have to put her back on it because of that drug. Constipation is one of the side effects.
 
More energy is a good sign! I hope it means the Remicade is already working it's magic!
Keep in mind though, some kids do feel better immediately, but plenty (like my daughter for one) take 3-4 infusions.

I hope the bladder stuff settles down soon :hug:!
 
She's driving us nuts.:ywow:
I've never seen her energy this high before. She's also sleeping a lot better.:medal1:

Still GI, bladder and JIA problems but it seems to be improving. :biggrin:

So 7 days into Remicade and I'm happy so far.:soledance:
 
Farmwife said:
I called the Urologist when we got home and we have an appointment next month.

They also put grace on a med called Ditropan, anyone heard of the drug?

She went at least 15 during remicade. The nurse put her next to the bathroom. :thumleft:

:ymad:Someone tell me how in Sam hill do I put multiple quotes in one post.:ymad:
Click to expand...

My daughter has been taking ditropan for years. It helps relieve her bladder spasms and helps her to not leak urine as she's incontinent and catheterized. Watch for overheating, dry mouth, and dehydration with ditropan.
 
My hubby and I have a question.
Why loading doses of Remicade? Is it to build up the medicine in your body?
Sorry, never dawned on me to ask.

Sadly we are seeing symptoms creep back in the last two days


Tomorrow is Remicade number 2.:thumright:
 
Good luck tomorrow! It is not unusual to see symptoms creep back a few days before. Yes I think the loading does are to build up the level in the body.
 
^^^ yeah that !!
Times two
Some kiddos need every 8 weeks maintenance
Mine never made it past 6 weeks but it still worked .
Happy recharge day!!!!
 
Glad you're already seeing a difference, that's promising! We did infusions every 6 weeks initially and now do every 4.

Incidentally, Humira has a loading dose too if it is prescribed for IBD but not if it's prescribed for JIA or AS. I have no idea why :confused2:.
 
All's well that ends well.:D

She did FABUOLUS!:dance: Took the IV like a camp and even assisted the nurse in putting it in. :wink:

her WBC count has always been low and now its within normal range.
:dance:The Lymphocytes that are always low have climbed to almost normal.


Now we wait 6 wks.

We will be starting to wean her off some meds in the next couple weeks(if she can).
It will be so nice not to have a cupboard full of meds.:kiss:
 
:( Joint , bladder and now abdominal pains returning.

We only made it two weeks into the third. We still have 3 wks until the next infusion. I'm hoping this isn't a bad sign and that it will not work.

I'm going to give it to next week.

Also were changing her formula to a low sugar kind.
I'm not sure what. The EO28 is hi sugar and I can tell its affecting her bladder.


We feel kind of lost. grace is still happy but even she says she doesn't feel well from time to time and doesn't know why.
 
I feel so bad you are going through this. Poor little Grace, she sounds like such a trooper. I hope whatever the issues are, they're resolved soon.
 
So her infusion was 9/22? that's only 9 days :( Sounds like you are headed back to steroids. :(
 
Poor Grace, she really is a trooper. I can't believe how grown up she looks from your picture!!

For some kids, it really just takes longer. M really did not feel good until after the fourth infusion (and then just got better and better till she felt GREAT!). She may need a higher dose too, but you'll figure all that out after the loading doses. We never made it to 8 weeks, we have always been at 4-5 weeks.

Another thought, if Grace has grown recently, perhaps her MTX dose needs to be adjusted?
 
Really sorry to hear that! Thinking of you, hope it doesn't mean it's not going to work.:hug:
 
Whoa, what a roller coaster ride you are having Fw :ghug: you must be exhausted. :(

I so hope that all will settle and Remicade remains Grace’s miracle drug, bless her :heart:

Thinking of you and sending loads of squishy hugs your way. :ghug:

Dusty. xxx
 
FW,
I so hope that it just has not been enough doses yet! Keeping my fingers crossed that it will work for her!
 
Thanks everyone.

I guess the issue for me is, it did work.
The infusions made a big difference but just don't last that long (9-11days).

Now abdominals, neck (spine), and EN spots are back.
Waiting to hear from the Rheumy and GI soon.

So is it still possible that Remicade will work, when it seems to be wearing off so fast?
 
What is her dosage FW? Is she at 5ml/kg? We had to adjust Jack to max of 10ml/kg to make it to the 9 weeks? Hope it's just a matter of adjusting dosage and time frame and it is her magic medicine.
 
So sorry to hear. Remicade worked well the first dose. 2nd we saw symptoms coming back and on the 3rd he had the allergic reaction. In the end... TNF didn't work for us either. Our GI is trying to get insurance to approve a geneology test. I don't quite understand, but they are 'checking to see why Brian's case is so difficult.' Grace's case seems difficult too. Our GI wants to know why and thinks this will help. Just fyi for ya :) Hugs
 
It is possible FW, you could increase the dose or shorten the interval between infusions. Also, once she's done with the loading doses, you should see a more consistent response.
 
Jmrogers4 said:
What is her dosage FW? Is she at 5ml/kg? We had to adjust Jack to max of 10ml/kg to make it to the 9 weeks? Hope it's just a matter of adjusting dosage and time frame and it is her magic medicine.
Click to expand...

I forget the dose amount. :ybatty: Im sure its written some where.

Your boy looks so big driving. When did they/we get so old?????:confused2:


:eek:Next infusion in 2 wks. So that will put them 4 wks apart. I guess the doc will see how it goes from there.:yfaint:

Until then Tylenol and heat packs.
 
In our experience, if the IBD meds don't work....you may not be dealing with IBD. Just something to keep in mind. I hope your girl feels better soon!
 
I always have that thought Dancemom.
The thing is the meds do work, just not long enough.

The Rheumy nurse said that since she improved so much after the infusions that the doc is/was happy to hear that
and thinks Remicade needs more time to build up in her system to work longer and even better.:D Any hope right now is welcomed.


:voodoo::voodoo::voodoo:
So musing on the GI issues.
:shifty:I wonder is it her new bladder medicine Ditropan?
I had to increase the Miralax because of this drug and read it might cause GI problems.
The Urology nurse said I could stop it any time.
So as of tonight no bladder med. I will give it a few days to see if it makes a difference to her pains or bladder.
 
Is this her second infusion or fourth?
If it's still the first three it really can take that long to build up and start working longer we saw this in DS . He did however burn through it fast so we never got past 6 weeks and had to do a higher dose.

Good luck
 
It will be her third infusion mlp. I'm praying it will just take longer.
I'm just thrown for a loop because I didn't expect it would work so fast but ware off like this.:yrolleyes:
 
If it was only her third then you can definitely increase and pull in .
Good luck

It wasn't even fully working for DS by the third .
 
Hang in there Farmwife! I know it's difficult to imagine when she's not doing well now, but it's very promising that she did get significantly better even if it was only for 9 days.

Will be thinking of Grace. We are using a special heating pad for M's neck pain (specifically for neck pain), not sure if that might help Grace?
 
:soledance:Well 3 days with out the bladder med and she's doing better.
No pains, no cramps and seems happier.
So for now it looks like the Ditropan was the issue.

We've been given a new bladder med that's suppose to be gentler
(why didn't they use that one in the first place?) on the track.
Insurance is causing issues so I still don't have it.
But right now her bladder has calmed down.

:wink:So for now all looks..............good.
 

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