starting Remicade

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disco
Regular Member


Date Joined Jan 2008
Total Posts : 154
   Posted 3/3/2008 11:21 AM (GMT -6)   
I've decided to move forward with starting remicade.  My doc wants to do a Colonoscopy first to see how things look before hand (early april) than I should start my first infusion shorty there after.
 
Couple questions for those who are using it.
 
1.  Does it take effect quickly? Will I feel better after the first one?
 
2.  What side effects do you feel immediately afterwards, can you do to work that day if you do it in the morning?
 
3.  Does it help with weight?  I bounce around from 180-170 when I'm flaring?
 
4.  Is this the last option for surgery?
Diagnosed in spring 2005 at age 28
Currently on 12 asacol pills a day + Entocort


toanova
New Member


Date Joined Dec 2007
Total Posts : 15
   Posted 3/3/2008 11:41 AM (GMT -6)   
I've had two Remicade treatments.  As far as working after treatments I really can't it makes me so tired I have not energy.  According to the nurse that is not unusual at all.
The nurse also said that Remicade starts working right away.  I feel about the same maybe a little better, but I can't put on weight.
 
4x3 Asacol
60/75 mg  of 6mp 
Remicade just started


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 3/3/2008 11:57 AM (GMT -6)   
I just had my first remicade treatment last week. i went to lunch right after and almost fell asleep at the table. I went home and took a short nap and was fine. No effect yet. My Gi said that most people don't feel an effect until after the second or third treatment, though some do after the first. I have my next infusion on the 13th then one a month after that. I don't know if it helps with weight but i know it's suppose to help get me off pred which in turn will effect my weight for the better!

Oh and there are trials going for Humira for UC which you may consider before surgery.
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, started at 60 mg 1/07, 15 mg pred, down to 10 mg 1/11/08...down to 10/5...
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07--bumped to 125 11/14/07...
Taken off of Imuran temporarily 1/11/08-back on 1/16/08 now at 150mg imuran
waiting to be scheduled for remicade.
Prontonix once daily for acid reflux, zofran twice daily for nausea, darvocet for pain
antispasmodics didn't work.


disco
Regular Member


Date Joined Jan 2008
Total Posts : 154
   Posted 3/3/2008 4:47 PM (GMT -6)   
toanova how old are you? I've noticed older peopel seem to complain about the energy thing more.
Diagnosed in spring 2005 at age 28
Currently on 12 asacol pills a day + Entocort


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 3/3/2008 5:27 PM (GMT -6)   
I've been on Remicade for over 2 years now.  I've had extremely positive results.  For me - after the 2nd infusion I stared seeing a decrease in bathroom trips - but it took until the 3rd until I was sure I was really headed towards remission.  It does make me quite tired for the next few days but afterwards - I am much better.  I'm still able to do what I have to do - just more slowly - and I go to bed early.  If your doc is going to pre-medicate with benadryl first you will be even more tired.  Haven't found any positive or negative effect with weight.  Except as kb said - I've gotten off the pred and have been losing all that weight.  As for the last step before surgery, there is still Humira coming out - and they are always working on new drugs to help.  I wouldnt' worry about that yet - first see if the Remicade works for you.

KTM


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 3/3/2008 6:23 PM (GMT -6)   
Disco, I also started feeling better after the second infusion. My doc pre-medicates with Zyrtec, which doesn't make me sleepy, so I can have my infusion in the morning and then go to work if I want to. I am more tired, but my job is sedentary so it doesn't interfere. By the next day, I'm pretty much back to normal.

There are other drugs in testing or development, so Remicade isn't necessarily the end of the line.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


Winter
Regular Member


Date Joined Sep 2005
Total Posts : 210
   Posted 3/3/2008 8:23 PM (GMT -6)   
I have been on Remicade for 2 years with great results & absolutely no side effects. I did take Benedryl before each infusion that would wipe me out. Now I take Claritin & no tiredness at all. I can get up & do anything I want & not feel a bit tired. I have my infusions at home so I get to relax the entire time. I also get a steroid before each infusion which may be another reason I don't feel tired.
Asacol 6 tablets twice daily
Remicade every 8 weeks
Folid Acid daily
Methotrexate 3 times a week
Iron supplements
 


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 3/4/2008 6:22 PM (GMT -6)   
I started to feel good effects within a couple of days of the first infusion. I don't require Bendryl or Zyrtec and am not at all tired after the infusion. I started to get symptoms again at 5-6 weeks so now my infusions are scheduled for 6 weeks apart. I have one coming up this Saturday morning and have quite a full day planned ahead me!

After this infusion I am going to continue my Prednisone taper, currently I am alternating 10/15 mg per day. A few days after my next infusion I am going down to 10 mg a day. Hopefully I will succeed with this taper with the more frequent infusions, also I started taking the probiotic Culterells and it's really been helpful.

Meesh
Diagnosed UC April 27, 2006
Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08
Lialda, 4 tabs in the morning; Protonix; Prednisone 4/27/06-present, starting yet another taper attempt, down to 15/10 mg alternating daily. Daily supplements: multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums
12/1 - 12/29/07 weekly Venofer (iron) injections; 9 mg Entocourt EC; Xanax as needed; Lexipro 10 mg, Rowesa; Asacol; Colazal three 750 mg capsules 3X day; Bad reactions: Imuran (2/07)

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