Remicade.....I feel like SH**

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JRosamonda
New Member


Date Joined Feb 2005
Total Posts : 18
   Posted 9/11/2008 9:07 PM (GMT -7)   
Hi there... I am now going on my 4th infusion.  I am at the 4 week point and not scheduled for another 4 weeks.  I feel terrible....Tired all the time, eat and am in the bathroom again numerous times...just like I felt before I started the infusions. 
 
I have gone back to teaching which I know has taken a toll on me but with the economy like it is I had to go back to work.  I know Remicade is not the miracle cure...what else can I do to help me feel better.  Has anyone had any success with products such as Noni Juice??
 
Please help..I want to continue to work but how I am feeling I do not know how.
 
Jolene 

CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 9/11/2008 10:44 PM (GMT -7)   
i'd rather feel like **** than be full of ****

a lot of the exotic juices (ie noni, gogi, mangosteen, acai) are a little more than a gimmick cos of the manufacturing process destroying all the good stuff and the prolonged shelf life/travel time to get to us. plus they are made from concentrate, not 100% juice. they may have some benefit, but i dont believe they deliver on their promise. if you want to try the juice route, get a juicer. or if you dont like that idea, the only one that i know of that people say they feel a clinical response to is the monavie drink. but the people i know that say it helps them all have RA, not crohns. and they eat like crap which most of society does and i believe that if you all of a sudden dose your body with a ton of anti oxidants (like monavie) and still eat like crap, you will/should elicit a positive response. now please dont take this a guarantee or an endorsement of this product.

otherwise try diet - go gluten free or try the scd or makers diet. or explain to your doc how you think remicade isnt working and you want a new drug (props to huey lewis - oh man, surprised myself how i worked that one in and i didnt even notice it too until i typed it).

dietary stuff is individual trial and error, but hopefully i've provided you with some leads to investigate and experiment with. best of luck!!!

Post Edited By Moderator (ivy6) : 9/12/2008 12:36:15 AM (GMT-6)


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/11/2008 11:35 PM (GMT -7)   
Guys, ease up on the swearing, please. Inserting asterixs doesn't change the meaning or intent of the words. Please keep this site suitable for youngsters.

Harry, I've also removed your reference to -- well, something that we're not allowed to discuss on this site.

Jolene, I'm sorry you're feeling so rotten. Please remember, though, that it takes time to heal. You may need a few more infusions before you start to see lasting results; also, some people find that they need a different dose before they really see effects.

Best wishes,

Ivy.
Co-Moderator Crohn's Forum.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 9/12/2008 12:12 AM (GMT -7)   
JRosamonda,
Have you tried injectable MTX or humira? It might just be that remicade doesn't work for you, but you also have not had a whole lot of remicade yet and it might just take time to build up enought in your system.
Plus whenever I hear about people with problems on remi I encourage them to get their ANA tested. Since I ended up getting the lupus stuff from remi.
Take care and Good Luck,
Navy


Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...

Post Edited (MMMNAVY) : 9/12/2008 1:44:11 AM (GMT-6)


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 9/12/2008 6:05 AM (GMT -7)   
ivy6 -

the reference you removed you did not understand as the first line in my post was a song lyric to a band and i was giving them props with an abbreviated name. no biggie though. i listen to niche music and didnt expect any one to get it anyway.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 9/12/2008 7:13 AM (GMT -7)   
It has been brought to our attention that there has been alot of cussing on the forum.
Swearing is just really not appropriate for family friendly forum.
I am not meaning to pick on anyone here, because Lord knows I have a potty mouth (lol), but we have to check ourselves here.
Thanks,
Navy


Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...

Post Edited (MMMNAVY) : 9/12/2008 8:17:05 AM (GMT-6)


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 9/12/2008 9:54 AM (GMT -7)   
jolene, to get back to your topic, I am so sorry you are not feeling better. I second crazyharry that diet can help. it is empowering to find something that at least can help that you can control. there is more and more support that gluten is hard on the gut, whether one has celiac or not, and it is not that hard to give up. I stopped in january, saw no difference for 3 weeks and then notice a huge improvement, after remicade, humira, and many other things didn't help. yp
49 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.

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