I hope somebody out there can help. I'm
ordinarily a pretty fit girl and I work
out regularly but since I started taking
remicade 6 weeks ago, I have gained around
15 pounds and every time I try to workout,
my muscles and joints hurt badly. Has
anyone else experienced this reaction to
remicade or is it all in my head. I'm
trying to get some insight before I go
complaining to my doctor. :?:
|
Ssprymom
New User, Becoming EHEALTHy
Joined: 15 Jul 2006 Posts: 2
Posted: 07-15-06 19:54pm
I took two single infusions of remicade a
few times over a year and it worked great
for my crohns it was a mirical for putting
me in remission.
Then I tried a infusion after not having
it for over 2 1/2 years and seemed to put
me back into remission once again.
However about 3 weeks later I felt like
what I imagine a sprained ankle would be
like two days later it was both my ankles
and my knee's in pain. I first went to
the doctor and they were going to send me
to physical theraphy, two days later they
thought that I was getting the arthritis
associated with crohns. After going home
from the doctors not thinking arthritis
assocated with crohn's could come on that
quickly and looking in my crohns books as
well as online I decided to call the on
call gastro doctor as the pain was
starting up in my elbows also. Good thing
I did what I was experiencing was a
classic delayed allergic reaction from the
remicade he told me to get to the hospital
asap or I would not be able to get out of
bed the next day. (who would have thought
3 weeks after the infusion) after a couple
days of prednisone I was back to normal.
I don't know if this is similiar to what
you are experiencing but I would
definately be contacting my gastro doctor
about it if you are taking regular
infusions of remicade as this is a side
affect.
For me this is the second medication that
I reacted with joint problems so maybe
that's just how I react. The first one
was penicillian 30 years ago when I was
taking it for a strep throat. It's really
a shame as both of these medications can
work so well. So back to my 6mp, pentasa,
or prednisone treatment when I have a
flare.
|
luvandfishes
New User, Becoming EHEALTHy
Joined: 26 Apr 2006 Posts: 2 Location: Michigan, US
Thanks Ssprymom Posted: 07-15-06 23:54pm
Wow. I didn't realize that reactions
could take so long to present. I'm to
the point of complaining. I think the
next step is surgery if the remicade
doesn't work out. Pentasa and prednisone
did some sort of funky thing to my liver.
I don't remember what b/c I was in the
hospital and they wouldn't let me have
food...A little incoherrent. I feel
really embarrassed bugging my doctors,
like I complain too much or something.
|
lhagan
New User, Becoming EHEALTHy
Joined: 16 Jan 2007 Posts: 3 Location: England
Re: Thanks Ssprymom Posted: 01-16-07 17:47pm
Hey, i've taken many infusions of
remecade, the first couple were
tremendously successful; gained a stone
and genuinally felt way better! I suspect
my body may have grew an immunity to the
drug, as after a 6th/7th dose its wonder's
disappeared... But is really good for
giving boosts of health to those with
crohns.
|
debidoo
New User, Becoming EHEALTHy
Joined: 17 Jul 2007 Posts: 5 Location: canada
Remicade Reaction? Posted: 07-17-07 13:29pm
hi,new to board.after my last infusion of
remicade(june 18)3rd one,a week later i
went from feeling well to extreme
tiredness,bad joint and bone pain,some
breathlessness and feeling of heart
beating really hard.tell tail signs of a
reaction except my doctor says you
shouldn'treact when already taking
prednisone and 6mp(which i've been on for
years).had 2decho today to check heart and
bloodtests to check for antibodies and
will be waiting anxiously for results.has
anyone else had a reaction while taking
these meds??????
|
kharper
New User, Becoming EHEALTHy
Joined: 01 May 2006 Posts: 3 Location: Arvada, CO
Remicade Reaction Posted: 10-11-07 21:30pm
Hi Debidoo,
You may no longer need a response and I
hope that's the case and that you are
feeling better now, but I had a pretty
rough time after my first remicade
infusion on 9/7. On the 13th, I started
out the day having pains in my back,
stomach and just generally felt bad all
day. By the time I got home from work, I
started with bad flu like symptoms and
fever and every inch of my body hurt. I
was taken to the hospital and things went
down hill from there. At some point in the
ER, I became tachycardic, my blood pressue
bottomed out and I stop breathing. I spent
the next 10 days in the hospital, 6 of
them in the ICU. I am now recovering but
certainly slower than I had hoped and all
we know is that I had a severe reaction to
remicade that wasn't an infection.
Obviously, I am no longer a candidate for
Remicade but for the ones of us who react
to this medication it can be pretty severe
at times and in my case and many others,
almost deadly. I apologize for this
sounding so negative but for the ones of
you having similar symptoms, please
proceed with caution and for the ones of
you having success, I am thrilled for you
but please be careful if you start to have
side effects as time goes on. Anyway, good
luck to you!
|
debidoo
New User, Becoming EHEALTHy
Joined: 17 Jul 2007 Posts: 5 Location: canada
Remicade Posted: 10-15-07 11:17am
thanks for the replies.i am no longer
taking remicade.two hospital visits and 6
weeks of feeling awful was it. i had
muscle and joint pain after my first 2
infusions as well but it was tolerable.i
figured it was an okay trade off for
actually having some energy.i am still
taking 6mp prednisone celebrex codiene
nexium fosomax b-12 injections and cipro
and flagyl.i will be trying humira next.my
doctor says there is a good chance i will
not react to this as it is not made from
mouse bits.i will let you all know if it
works as well as the remicade. keep
fighting,debidoo
|
kharper
New User, Becoming EHEALTHy
Joined: 01 May 2006 Posts: 3 Location: Arvada, CO
Remicade Posted: 10-15-07 16:09pm
Hi again Debidoo. Just to let you know, I
have used both Humira & Enbrel with no bad
side effects so I hope the Humira will be
the ticket for you. For the record, and I
had meant to tell you earlier that I have
been taking between 7.5 - 10 mg of
prednisone for a very long time, so it
doesn't seem to stop the effects of
Remicade for all us. The question that I
have for you is on the previous email you
had mentioned that your doc was doing some
blood work for antibodies, what did they
find in regards to this? Out of
curiosity, has anyone else had
conversations with their docs. regarding
antibodies and Remicade?
Kelli
|
lexrachael
New User, Becoming EHEALTHy
Joined: 20 Oct 2007 Posts: 1
Posted: 10-20-07 13:28pm
Ssprymom
wrote:
I took two single infusions
of remicade a few times over a year and it
worked great for my crohns it was a
mirical for putting me in remission.
Then I tried a infusion after not having
it for over 2 1/2 years and seemed to put
me back into remission once again.
However about 3 weeks later I felt like
what I imagine a sprained ankle would be
like two days later it was both my ankles
and my knee's in pain. I first went to
the doctor and they were going to send me
to physical theraphy, two days later they
thought that I was getting the arthritis
associated with crohns. After going home
from the doctors not thinking arthritis
assocated with crohn's could come on that
quickly and looking in my crohns books as
well as online I decided to call the on
call gastro doctor as the pain was
starting up in my elbows also. Good thing
I did what I was experiencing was a
classic delayed allergic reaction from the
remicade he told me to get to the hospital
asap or I would not be able to get out of
bed the next day. (who would have thought
3 weeks after the infusion) after a couple
days of prednisone I was back to normal.
I don't know if this is similiar to what
you are experiencing but I would
definately be contacting my gastro doctor
about it if you are taking regular
infusions of remicade as this is a side
affect.
For me this is the second medication that
I reacted with joint problems so maybe
that's just how I react. The first one
was penicillian 30 years ago when I was
taking it for a strep throat. It's really
a shame as both of these medications can
work so well. So back to my 6mp, pentasa,
or prednisone treatment when I have a
flare.
I think I've been experiencing a similar
allergic reaction from Remicade too! My
ankles have swelled like crazy and turned
bright red (so bad I couldn't walk) and
now my knee had a huge hive on it and has
become swollen. ANyone else?
|
kadnil
New User, Becoming EHEALTHy
Joined: 14 Nov 2007 Posts: 1
Remicade Posted: 11-14-07 19:17pm
I was in a trial for Remicade. When the
trial ended I had to pay for my Remicade.
The drug was not covered by our government
plan in Canada; so, I sold my home to pay
for the next two years of Remicade
($90,000). I thought it was worth it to
have remission be there for me and no more
prednisone or methotrexate.
Well now I am sitting waiting to go back
to the hospital to have a look to see if
they are going to bag me. Now I wonder if
it was all worth it.
The prednisone has given me uveitis. I
now have arthritis and spend a great deal
of time feeling very very tired.
|
sirensong
New User, Becoming EHEALTHy
Joined: 20 Nov 2007 Posts: 1
Remicade Reaction Posted: 11-20-07 11:14am
I am
glad you mentioned having a reaction after
3 weeks. I just had a remicade infusion 8
days ago, and had a terrible reaction. I
went to the ER, and they told me it
couldn't possibly be a reaction to the
remicade after 7 days. They wanted to have
an orthopedist look at me the next
morning. In the meantime, though, I would
be given NO pain meds - not even an
aspirin. I went home, where at least I
have some percocet I can take. But, I
still hurt like the dickens. I gues I just
have to wait for it to wear off. The sucky
thing is, I was feeling better for the
first time in years with relation to my
Chrohn's.
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Schizophreniahealth
This page was last updated on June 11, 2008
I am
glad you mentioned having a reaction after
3 weeks. I just had a remicade infusion 8
days ago, and had a terrible reaction. I
went to the ER, and they told me it
couldn't possibly be a reaction to the
remicade after 7 days. They wanted to have
an orthopedist look at me the next
morning. In the meantime, though, I would
be given NO pain meds - not even an
aspirin. I went home, where at least I
have some percocet I can take. But, I
still hurt like the dickens. I gues I just
have to wait for it to wear off. The sucky
thing is, I was feeling better for the
first time in years with relation to my
Chrohn's.