Remicade/does it work

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motherofson
New Member


Date Joined Mar 2009
Total Posts : 3
   Posted 5/27/2009 6:42 PM (GMT -6)   
My son started remicade, and is now to the 6 wk. dose, after this it's every 8 weeks. There has been no change in his health at all. Just wondering how long does it usually take till there is a change for the good. I'm sure it's different for everyone, but we were so hopeful for this to work.

Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 5/27/2009 7:01 PM (GMT -6)   
I had an improvement in symptoms pretty much right away, but it took quite a few treatments until I achieved remission, more or less (mornings still rough, but other than that symptoms all at bay).

As with all the drugs, your mileage may vary, but a lot of people find Remicade to be extremely helpful.
47 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Finally achieved remission mid October 2008!!

15 Remicade infusions, current scheduled every 6 weeks: 1st: 7/21/07; most recent: 4/25/09; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D;

Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro


Canadian Chick
Regular Member


Date Joined May 2009
Total Posts : 60
   Posted 5/27/2009 7:45 PM (GMT -6)   
I saw an improvement a few days after the 3rd dose. I was really impatient for it to help as I was so sick, but unfortunately had to wait almost 7 weeks for it to kick in.

Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 5/27/2009 9:00 PM (GMT -6)   
The very first dose worked...and then it didn't. It was the 5th that was the charm. Hang tough. You will know soon. We still stayed loyal to the cortafoam, Colazal and the 6mp, so it is hard to know exactly what combo is working, but nothing stopped the bleeding and urgency BUT the Remi.
K
Daughter,15 diagnosed 1-08 w/ UC .
Previous drug sampling: Asacol, Prevacid, Flagyl, Prednisone- 50mg to 0, 4 major flares '08.Hospital four x. Low residue diet,
6MP, Colazal , Cortifoam enemas,
Trying probiotics, Niferex, fish oil, Magnesium, Acupuncture.
Remicade 10mg per kilo@ 8wks, since 10-08. Still on 6mp and Colazal


PinkPaperclip
Regular Member


Date Joined Mar 2009
Total Posts : 108
   Posted 5/27/2009 9:13 PM (GMT -6)   
Remicade din't do any good for me , in fact I am sicker than ever after my second dose. I am getting a colectomy very soon and will have a J pouch later. Given the response to Remi and my health status it'S the logical thing to do. If your son is healthy enough it might ben a good idea to continue trying , it is really a perosnnal choice.
26 Years old
Diagnosed with severe pancolitis 03/09 unresponsive to medical treatment
Prednisone 35 mg, Imuran 100mg, 2nd Remicade infusion.
Mulitivitamin, calcium supplements, probiotics
Seroquel 12.5mg, Paxil 10 mg  (for anxiety, since 2003)
Considering total colectomy + J pouch a couple of months later


shakes3
Regular Member


Date Joined Mar 2009
Total Posts : 21
   Posted 5/27/2009 9:30 PM (GMT -6)   
I've had 3 doses of remicade in the past few months. I noticed improvement with the first two but after the third one I started to flare up and getting worse as the days go on. Number four is in a couple of weeks so i'll have to see if it does anything.
Diagnosed with moderate UC left side 2005
Salofalk 3pills x 3 times daily - No effect
2006 moderate to severe UC
Prednisone 25mg daily cycled down 5mg per week
Asacol 3pills x 2 times daily
Remission achieved
2009 severe pancolitis
60mg prednisone cycled down 5mg per week
Remicade
2grams fish oil, multivitamin
Currently at 10mg prednisone, starting to flareup again.


Pitz
Regular Member


Date Joined Jul 2007
Total Posts : 84
   Posted 5/27/2009 10:06 PM (GMT -6)   
I started Remicade in Nov. '08. It worked for me about 3 days later. However, it's not working so good for me now. I started flaring in Feb. with the big D since then, but not a lot of blood. I had a colonoscopy last week which showed severe UC, so my Remi was upped to 10mg (just had it yesterday). I don't know if it was the Remi or other issues I have (anemia, low hemoglobin), but last night and this morning I had three pretty bloody movements. I slept most of the day as I felt light-headed when up. I've been drinking lots of water, though, too, in case I've gotten dehydrated. I see my hematologist tomorrow. My GI also consulted with a couple other docs and is sending me to another specialist that has a study going for some new drug. Don't know what it is, but I don't know that it will work out, anyway, as I'm so sick and really can't risk getting the placebo. We haven't discussed how long we'll try the Remi before heading for surgery, but I'm hoping it does kick in. I'm so sick of this disease!

Ulcerative Pancolitis (dx'd 6/2002)
Pentasa (4gm/day); Prednisone 5mg am, 5mg pm; Aranesp injection every week for anemia;
Lialda 4 tabs 1x/day; Rowasa 2x/day; started iron infusions 7/18/08; started Remicade 11/12/08; blood transfusions when hemoglobin drops to 8.0;
6-MP (discontinued as it lowers my white count)
Immodium-AD (occasionally)
various meds for other conditions


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 5/28/2009 7:41 AM (GMT -6)   
For me Remicade took about 5 days to kick in the first time, but then it only lasted about a week and a half. The second time it kicked in after 2 or 3 days but only lasted a week or so... They were going to try me on twice the normal frequency but because I also started getting joint pains, I was switched to Humira. To get it to last I have to take it weekly rather than every two weeks but so far it is helping, albeit not stunningly, and so far I tolerate it ok. According to my doc, if Remicade fails, that definitely does *not* mean Humira will fail too. Not that I am suggesting Remicade is a failure but it does seem there should have been some improvement, even if only short lived.
Pancolitis >20 years, allergic to all 5ASAs
Tried everything under the sun (natural and alternative)
Some partial success with TSO but was too expensive to keep up 
Remicade Humira, lots of probiotics, entocort, tapering pred again, maybe surgery this year
 
 


Nor_TX
Regular Member


Date Joined Nov 2008
Total Posts : 360
   Posted 5/28/2009 3:39 PM (GMT -6)   
It wasn't until my 5th or 6th infusion that I noticed an improvement. But since then (more than 4 years ago) I am feeling great. Just hang in.... it will work!
Presently on: 600 mg. Remicade every 4 weeks
                   Venofer infusion every 4 weeks
                   B12 every 4 weeks              
                   15 mg. Methotrexate/injection weekly
                   12 Asacol daily
                   10 mg. Celexa daily
                   Zofran as needed


vega19
Regular Member


Date Joined Sep 2008
Total Posts : 91
   Posted 5/28/2009 7:08 PM (GMT -6)   
I noticed improvement at about 2 weeks but I wouldn't say I was in remission until about the 3rd infusion. I did start flaring again though just before my 6th infusion and had to go back on pred to get it under control. I'm doing good now though.
31 year old female diagnosed with UC (entire colon) Feb 2008
(4) 400mg Asacol 3x a day
Remicade 10mg/kg every 8 weeks
Omega 3 supp, calcium supp, coconut oil supplement
probiotic, prenatal vitamin


qazwsx12
Regular Member


Date Joined Nov 2008
Total Posts : 63
   Posted 5/28/2009 10:33 PM (GMT -6)   
If I remember right it kicked less than a week after getting the injection, or even right away. I find Humira seems to work the same and it's more convenient since it can be injected on your own with a pen.

mamaluke
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 5/29/2009 8:06 PM (GMT -6)   
our experience with Remi is as follows- the first dose worked like a charm almost immediately. the second and third does were also charms but then by the fifth treatment, it noticeably lasted for less and less time. by the 8th dose, it wasn't doing anything. When we added in 6mp to the equation, neutropenia (scary low white blood cell count) set in and it took ten days in the hospital to get things back on track. long story short - surgery on 5/8/09 and life it is a lot less painful
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