Re: Another Weird Affect

[Guest guest]

Alia,

I don't know if its from the remicade or not...but my sister had

problems after she had been on remicade for a few months.

Specifically, she had all over body pain and her muscles contracted to

the point where she couldn't use them. She had come to visit me just

days after her infusion. She was home in bed and I was at work. I

get this call from my mom that is several states away telling me to

get home to that her muscles were " frozen " and she couldn't

get out of bed. Scared me to death. I rush the 2 blocks home and

there she is shuffling like an old lady and had basically been stuck

in bed for over 2 hours...she didnt have my work # so she managed to

reach my mom who called me. She also had incredible fatigue! She

loved what the remicade did for her joints but after two more

infusions she, the doctor would no longer give it to her because even

with the benadryl her body was contracting and causing her to have

breathing problems.

I would call the doc and let them know whats going on with Miss.

Caroline. I hope that this isn't any side effect from remicade but be

sure to check it out!

(Aundrea 10 systemic jra)

>

> Okay - Now I am REALLY starting to wonder... Caroline just woke up

from

> her nap and said that she is sore all over... She is walking like a

> little old lady and can hardly move. Needless to say ballet is out

for

> the evening... Could this be from the Remicade? How is that even

> possible??

>

> Alia and Caroline, age 4, poly and uveitis

>

>

>

[Guest guest]

One of the reasons I went off Remicade was because I always felt horrible right

after getting it. I would feel like I had been hit by a car and for some odd

reason the day after the infusion it would hurt when I peed. I would talk to her

doctor about that side effect, I'm so sorry she is having such a hard time with

the arthritis, she is such a brave little girl. My viens have a tendency to roll

too.. basically what it means is the blood will flow through and then collapse..

kind of like a wave crashing and then receeding but it doesnt crash again..

hence the rolling term. Its pretty painful too! Caroline is always in my

prayers.. I'm hoping they find the perfect combination for her and she can be a

normal little girl.

Lots of Love

(JAS, 21)

sonia1md <sonia1md@...> wrote:

Alia,

I don't know if its from the remicade or not...but my sister had

problems after she had been on remicade for a few months.

Specifically, she had all over body pain and her muscles contracted to

the point where she couldn't use them. She had come to visit me just

days after her infusion. She was home in bed and I was at work. I

get this call from my mom that is several states away telling me to

get home to that her muscles were " frozen " and she couldn't

get out of bed. Scared me to death. I rush the 2 blocks home and

there she is shuffling like an old lady and had basically been stuck

in bed for over 2 hours...she didnt have my work # so she managed to

reach my mom who called me. She also had incredible fatigue! She

loved what the remicade did for her joints but after two more

infusions she, the doctor would no longer give it to her because even

with the benadryl her body was contracting and causing her to have

breathing problems.

I would call the doc and let them know whats going on with Miss.

Caroline. I hope that this isn't any side effect from remicade but be

sure to check it out!

(Aundrea 10 systemic jra)

>

> Okay - Now I am REALLY starting to wonder... Caroline just woke up

from

> her nap and said that she is sore all over... She is walking like a

> little old lady and can hardly move. Needless to say ballet is out

for

> the evening... Could this be from the Remicade? How is that even

> possible??

>

> Alia and Caroline, age 4, poly and uveitis

>

>

>