A Remicade timing question

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Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 6/4/2009 2:17 PM (GMT -6)   
As much as I had decided not to continue Remicade, now that I am just 1 day past the day when I would have received my 3rd initial (loading dose) my stomach hurts and I'm running a low fever.
My guess is that my UC is coming back and with that thought in mind, I suddenly don't care too much about the risks of Remicade or even the reaction I had!

So, I'm contemplating calling my GI and asking to give me the third dose. I've been taking 6mp for 3 days, I'm assuming I can just stop and that won't affect me.

So, here's my question, I was supposed to have the 3rd dose yesterday (exactly 6 weeks), how much does the exact timing matter - can it be a few days off?
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Apriso 4/day, starting 6MP

Discontinued: Prednisone, Remicade (bad reaction to second Remicade infusion)


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 6/4/2009 2:21 PM (GMT -6)   
Yes, it's okay to be a few days off. Sometimes I need to change days, and it's never been a problem.

Carol

Remicade - will have my 29th infusion on July 8
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 6/4/2009 7:34 PM (GMT -6)   
Lonielane said...
Yes, it's okay to be a few days off. Sometimes I need to change days, and it's never been a problem.


Thank you! I actually called my GIs office and they were gone. I'm pretty sure I'm going to do it again!
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Apriso 4/day, starting 6MP

Discontinued: Prednisone, Remicade (bad reaction to second Remicade infusion)


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 6/4/2009 9:00 PM (GMT -6)   
Yeah the timing is not an exact science- I mean, patients are sometimes changed from regular to 2x frequency or back- talk about a change in timing, so even a few days is just a blip. But I know the nurses and schedulers are taught to be anal about it especially in the beginning. Good luck with Remi. It failed me and even Humira seems to be sputtering out now for me but I want to keep it going while I try a few other last ditch things.
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
 
 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/4/2009 9:07 PM (GMT -6)   
My infusion next week will be 2 weeks late, because I delayed it so I could recover from surgery. I've delayed it as long as 2 weeks in the past with no problem.
Judy
 
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 
.


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 6/4/2009 11:12 PM (GMT -6)   
Same here,went 12 weeks, 8 weeks, 9 weeks, 6 weeks... All a part of a study group. You can move it around a bit.
We didn't get remission till after the 5th infusion, and had to switch doses once too. Hang tough. Daughter is in remission for the first time since diagnosis, and it is a happy time.
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


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 6/5/2009 10:52 AM (GMT -6)   
Judy,
Sorry to hear you had surgery!

I still can't believe I want the Remicade again, but its easy to talk about not wanting it once I was in remission, but the minute those UC symptoms started to appear, I'm on the phone with the GI telling him "maybe I was wrong about the Remicade"
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Apriso 4/day, starting 6MP

Discontinued: Prednisone, Remicade (bad reaction to second Remicade infusion)


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 6/5/2009 11:08 AM (GMT -6)   
Well, good luck! I hope that your infection (pleurisy, right?) was a fluke and wasn't related to the remicade! Who knows, maybe it was related to you having been in the hospital. At any rate, I have my fingers crossed that it doesn't happen again and you can stay in remission for a long time!
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa twice weekly, Culturelle probiotic, and Zoloft (25 mg).

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