my friend is going to have Remicade infusions... what does she need to know about?

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jennys friend
New Member


Date Joined Dec 2008
Total Posts : 4
   Posted 12/17/2008 7:42 AM (GMT -7)   
Infusion-has anyone taken this path for their Crohn's? I'm doing research for my best friend who was just told that this is the way to go. She is very nervous about side effects and what to expect. Can anyone share their experience with this?
Jenny's Friend

Post Edited By Moderator (MMMNAVY) : 12/17/2008 10:08:41 AM (GMT-7)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/17/2008 7:44 AM (GMT -7)   
Are you talking about a Remicade infusion? If so many on this board use that medication and have success with it. I am sure more will be along soon.
Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 12/17/2008 7:48 AM (GMT -7)   
Jennys friend,
Welcome to healingwell and kudos for being such a good friend. I would like to answer your question, but I am not sure which infusion you are talking about. Do you mean an iron infusion or a remicade infusion? These are both very common with crohns and there are plenty of people who have had both. If you would let me know which one I could retitle you thread.
Thanks,
Navy
Forum Co-moderator - Crohn's Disease
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


jennys friend
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Date Joined Dec 2008
Total Posts : 4
   Posted 12/17/2008 7:51 AM (GMT -7)   
Thanks Navy, I guess I don't have enough info from her yet. back soon

MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 12/17/2008 8:23 AM (GMT -7)   
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


jennys friend
New Member


Date Joined Dec 2008
Total Posts : 4
   Posted 12/17/2008 9:06 AM (GMT -7)   

Thanks for the link Navy. It's Remicade Infusion. I guess what I'm looking for is what side effect some people have had from the treatment. From my own experience with other procedures there always seems to be little things that the Dr. doesn't bother to let you know. She's worried there will be physical effects like hair loss, skin and hair changes, fatigue, loss of appetite, nausea, andy other body changes that only people who have gone though it would know about.

Jennys Friend

 

MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 12/17/2008 10:06 AM (GMT -7)   
there are minor side effects like what you mentioned (nothing that she hasn't already gone thru with crohns), I would said have someone take her for the first infusion (it will take a couple hours at the very least, plus they might give her pre meds like benadryl and steriods). But for those that remicade does work for it is a great thing, and most get a pretty quality of life back.
There can be some severe side effects like remicade induced lupus, but this happens to a very very small amount of people. The main thing to watch out for with this situation is tremedous joint pain. Like when one moves it is like trying to move thru chest deep snow.
Forum Co-moderator - Crohn's Disease
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


jennys friend
New Member


Date Joined Dec 2008
Total Posts : 4
   Posted 12/17/2008 10:10 AM (GMT -7)   
Thank you so much. Thats the type of info we're really looking for.
JF
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