remicade oh boy

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Veteran Member

Date Joined Feb 2004
Total Posts : 6518
   Posted 11/17/2009 8:32 AM (GMT -7)   
 Had my remicade yesterday and while I am always tired the day after, today I only feel like I ran a marathon backward, up hill, while dragging a battleship through the mud. They always do a cortisone push because I have had some bad reactions . My lips and tongue got numb , but then this could have been the nurse trying to get me to shut up. You think ? The shot usually helps with the old joint pain too but today,,,nada..Im wondering why I have to feel so bad to feel better. I think its like when you have a headache and then you hit your thumb with a hammer , your head doesnt hurt as much for a while. Maybe if I jumped off a bridge I would feel great from the impact. Nope, with my luck there would be a boat passing just as I made it to the water and all I would succeed in doing would be to make a large dent in the top of a sugar barge.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.

Regular Member

Date Joined Mar 2009
Total Posts : 452
   Posted 11/17/2009 10:39 AM (GMT -7)   
Sniper....Thank you.  I have my second infusion tomorrow and I have been told the 2nd and 3rd are the worse as that is when I will feel the side effects if they happen.  I have been scared of the infusions and now....I can't wait to get them and feel like I am going in reverse.
Actually, I am sorry that you feel so bad.  Just remember you have to think long term.  Down the road your going to feel 1000 times better.
It is always darkest before the dawn...and I think I see the sun coming up.
36 yr old Male with Crohn's Disease since '88 - No Surgery yet
Been on almost every type of drug with bad results
Remicade since Nov 2009

Veteran Member

Date Joined Aug 2008
Total Posts : 5922
   Posted 11/17/2009 11:48 AM (GMT -7)   
     WOW...I need some positive thoughts here guys!  LOL!  I have ulcerative proctitis and barely hanging by a thread to stay out of the hospital.  Tomorrow I receive my first Remicade infusion...very scary for me.  I have had this disease for over 11 yrs and now am Prednisone dependent and the 6MP stopped working.
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008 for ten days.
Remission Nov 08 thru May of 09.
Flare May of 09 thru Aug of 09.  Meds: Colazal, 6MP, prednisone taper, probiotics, Benicar, calcium and multivitamin
Remission...too short...Sept and Oct.  Now in bad flare again...blood and mucus...back on prednisone, off the 6MP, waiting for approval from ins co to start Remicade.

Regular Member

Date Joined Sep 2006
Total Posts : 171
   Posted 11/17/2009 4:01 PM (GMT -7)   
Sniper, if you're not an author you should be. I always enjoy reading your posts, even when you feel bad you almost make it sound like fun.

I hope the Remicade kicks in and does the good things for you real soon.

By the way, you should put that battleship back in the water. They may need it.
I feel a whole lot more the way I do now than I did a little while ago.

Regular Member

Date Joined May 2009
Total Posts : 173
   Posted 11/17/2009 4:04 PM (GMT -7)   
Had second infusion today. So far, so good. No side effects, knock on wood. Good progress CD-wise, but not yet remission. It's only been two weeks, but the difference is significant.
"What can't be changed must be endured" - unknown

DX with distal Crohn's colitis Oct 2007, predominantly in rectum
Colozal (750mg): 3 pills 3xdaily
Cortifoam - 1 nightly
6MP - currently at 100mg and waiting for response......

Veteran Member

Date Joined Jan 2007
Total Posts : 3200
   Posted 11/17/2009 9:49 PM (GMT -7)   
Oh Sniper you make me almost happy I went into anaphylactic shock with remi... Feel better soon. x

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...

Veteran Member

Date Joined Feb 2004
Total Posts : 6518
   Posted 11/17/2009 9:52 PM (GMT -7)   
Christine, the remicade helps . Really, it's just the 5 hours of sitting in the chair that does me in. They have to access my port and that cant be done by the regular nurse so they have to get the docs aid when she is not busy, then the shot and a half hour wait before they start the cade and they drip it very slowly. By the time Im done I have been sitting way to long. The next day I am very tired and stiff, but , I start to feel better by the second day because I move around a lot more. Before remicade I walked with a cane if at all and now I ride my Harley so heres hoping you have the same good results. That goes for you too Java.
Azjohn, I am not a writer but I do like to look for the funny side of life. That makes the crappy stuff easier to take. The battleship is mine though. I drug it here and I'm keeping it.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.

Regular Member

Date Joined Feb 2008
Total Posts : 298
   Posted 11/17/2009 11:28 PM (GMT -7)   
I hope you feel better soon Sniper!!

Remicade did not work for me the first year I was on it, but then my doc pretty much doubled my dosage and that seemed to do the trick. Prior to Remicade working my body was steroid dependent.

I am usually tired after my infusions and sometimes suffer from a few minor side effects (one morning I woke up with a huge fever blister on the skin between my upper lip and nose) but will say that it has given me my life back (as you know it can)!!

Keep riding your Harley!!! Can't think of a better therapy than that!!

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