Re: HELP first Remicade infusion side effects????

[Guest guest]

OMG poor baby! I'm sorry I can't be of any help. I hope she is feeling better

and you can get some answers so you can sleep. You must be a mess after all

this.

I'll keep you in my prayers.

, Amber (16) Psoriatic

[Guest guest]

, My son receives Remicaid every 8 weeks for Crohn's disease. Prior to the

infusion he is given Tylenol, Benadryl, and Solumedrol to prevent an allergic

reaction. For the first three or four infusions he was pretty sleepy during and

after the infusion but now he just sleeps during the infusion and so far no

allergic reactions. Ask about having your daughter pre-medicated to see if that

helps.

Teri ( 13- pauci JRA in remission)

[Guest guest]

Hi, ! My son also recently started remicade infusions. He has had two and

next week goes for a third. The infusion center premedicates him with Benedryl

and Motrin each time. He tends to be real tired after the treatment but won't

sleep during, which I think is partially due to anxiety. The treatments have

really helped him and we haven't noticed any side effects. A few months ago he

was walking with crutches and orthopedic boots due to severe heel pain. Now, he

is walking on his own and especially the first few weeks after a treatment he is

not in pain. His pain is increasing this week but he is due for another

treatment and the doctor said she may have to adjust his dose since we recently

weaned him off prednisone too.

I agree with Teri that you should ask about premedicating. Hope everything

works out for you.

Jeanne & (16, Spondy)

[Guest guest]

My has had 4 Remicade infusions so far. THe way his rheumy had

hospital handles the infusion , is they treat every child as they will have an

allergic reaction to the medication. Before has the infusion he is

given tylenol so he will not get a headach or fever and an iv of benedryl. then

he gets the remicade. after the first infusion we had to wait 20 minutes to

monitor him. The nurses told me most of the time the allergic reactions happen

on the second dose as it is a higher dose (at least how his hospital does it)

So far it has been going very well. the first 3 infusions the only side effect

he had was terrible dreams. they would last almost a week. he did not want to

get the infusion as he knew the nightmares would come. the last infusion went

fine.

He goes back next Friday and once again they are increasing his dosage as he

feels good for about 3 weeks and then he starts limping again and his hip is in

pain.

Carol

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> Hello,

> So my daughter Lexi received her first remicade infusion today for her JRA and

ulcerative colitis and I'm wondering if anyone else who's child has had remicade

has experience the following. She did GREAT the whole time during infusion over

3 hrs, but then within about 15 min when they checked her heart rate they

discovered that her heart rate was pretty high - higher than when she came in

pre-iv and was panicky! (It was bouncing between 120 and 145 even laying and

sitting in her hospital bed.) She also started a very slight fever of 99 or

just barely 100, so they gave her tylenol and when that didn't bring down her

heart rate and temp they gave her benedryl. Her heart rate finally came down

very slowly and the fever went away, but then she began to complain that her

chest felt " congested " . She described that it felt like she was inhaling

powdered sugar, and although she could breathe (her oxygen was always 95% and

above) she said her chest felt " crampy " . Her heart rate came down to around 110

continuously, so the docs said it was just anxiety but AFTER the infusion was

completely done???? That doesn't make sense! They sent us home because they

claimed that there was no danger but I am wondering if anyone else had similar

experiences? HELP!

> Thanks,

> and Lexi (9, jra, hypothyroid, and ulcerative colitis)

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[Guest guest]

No chest pain but did get severe leg pain. He went to see the same

rheumatologist did and was given a script for Celebrex as needed. The

rheumy said the Remicaid should help the joint pain. Happened only that one

time ans he has tolerated the rest of the infusions fine.

Teri (- 13 Pauci JRA in remission)

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> Thank you all for your responses. I notice almost everyone gets

pre-medicated it sounds like???? I am curious why they didn't suggest to do

this right away for Lexi. What about chest pain on anyone? She seems to be

much better today but I'm wondering what the chest pain might have been if her

vitals all were ok. Thanks everyone.

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