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

[Guest guest]

My son had trouble breathing after his infusion. It didn't start until after

we were home. Turns out he was allergic to the mouse protein used in the

medicine. I would take her to the see her pediatrician if she still isn't

quite right. It is my understanding that any allergic reactions could become

worse each time she is has an infusion. Hope she is doing better today.

Moy

*Join us March 5 for a Nerf War to blast out juvenile arthritis!

Details at www.walkwithandy.com/nerf/*

On Thu, Jan 27, 2011 at 11:56 PM, <URnotIM@...> wrote:

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> 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]

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.

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

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

>

>

> 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 " cramp y " . 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]

My 9 yr. old daughter has been going for the Remicade infusions since last

August, goes once a month. She has also been premedicated before each

treatment with both Tylenol and Benedryl. So far she has had no side

effects at all, doesn't seem to get tired, and is full of energy when we

leave Although we haven't noticed a decrease in her pain and stiffness, it

also hasn't gotten any worse, which is just as good!! She still has her

weekly Methotrexate injections, but has been able to decrease from 30ml to

25ml. I hope things get better for you!!!

Lori and Elena in MA (psoriatic arthritis, uveitis, ADD)

On Fri, Jan 28, 2011 at 8:53 AM, tjdtj4 <screamingenie@...> wrote:

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> 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)

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