Remicaid Help!!!!!

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New Member

Date Joined Jul 2009
Total Posts : 6
   Posted 7/11/2009 12:42 PM (GMT -6)   
I am 26 yrs. old and have had UC since I was 11 years old.  I had a flare up that began in April 2009.  I had been only taking Asacol 400mg. 3 tablets twice a day but after my flare up the doctor increased my Asacol to 400mg. 4 tablets three times a day.  He also started me on 40mg. Prednisone daily.  He additionally put me on antibiotics.   I have been taking the Prednisone since April and it has not cleared my flare up so my doctor started me on Remicaid 5mg/kg yesterday.  I was very emotional about having to start on the Remicaid.  I am VERY UNCERTAIN about this medication even though I have been assured by my doctor I will be fine.  I have a strong family history of cancer and everything I read kept reinforcing the increased risk for developing lymphomas.  My doctor said this was a rare occurence.  I have one 3 yr. old child.  Does anyone know about risks associated with Remicaid and pregnancy? I also expressed my desire to have another child in the future.  My doctor said that once you start Remicaid it is a life long commitment.  He told me that I would never be able to stop and restart taking Remicaid because of the developement of antibodies.  I have a grandparent that died of colon cancer.  I have just been very emotional and any help or support would be appreciated. 
Currently taking
Asacol 400mg. 4 tablets 3 times a day
Levaquin 500mg. daily
Flagyl 500mg. three times a day
Prednisone 30mg. daily
Remicaid 5mg/kg started on 7-10-2009

Veteran Member

Date Joined Mar 2008
Total Posts : 1202
   Posted 7/11/2009 2:20 PM (GMT -6)   
I cannot answer all of your questions, and know nothing about pregnancy on Remi,. The drug has been a colon saver for my daughter, and it is the only way she achieved remission. I hope it works forever for her, as the Pred is a nasty drug that didn't agree with her at all/ The Remicade might just give you the same--normalcy. The lymphomas are quite rare, and are most common in young males---even that is unlikely. The infusions don't hurt, the side affects are small(for us), and I knw there are some risks----we had a Lupus scare, but I don't think cancer is one of the drug fears. Hang tough!
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

Veteran Member

Date Joined Aug 2008
Total Posts : 903
   Posted 7/11/2009 3:29 PM (GMT -6)   
I also can't say anything about remicade and pregnancy, but I do know about Humira and pregnancy. All I know is that Humira is safe, and in my opinion if Humira is safe to take during pregnancy I'm thinking Remicade should be too.
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira since of May 2007 (Currently in remission since May 2007)
Put on Imuran from May 2007 to Jan, 15 2009
Put on Canasa June 25, 2009, off Canasa on June 30th 2009.
*Can't take Asacol, Allergic to Remicade, odd reactions to Canasa went backwards a bit.
*Started minor flare in mid June 2009 but VERY minor. :(

Veteran Member

Date Joined Jun 2009
Total Posts : 985
   Posted 7/11/2009 3:41 PM (GMT -6)   
There are several women at the place I get my infusions who have had babies while on Remicade. I feel fine about staying on it if I decide to get pregnant again.
26 year old female
Diagnosed with unspecified UC 11/08 by flex. sig. as I was pregnant at the time and did not want to be put under for a colonoscopy
Breastfeeding my baby boy (born 4/8/09)
10 mg Prednisone AM, 10 mg PM (tapering from 60mg a day)
Started Remicade 6/11/09 (2 infusions so far)
Was on Asacol (2400mg or 3600mg a day) for 6 months with no success

Veteran Member

Date Joined May 2006
Total Posts : 619
   Posted 7/11/2009 6:09 PM (GMT -6)   
I've tolerated Remicade well for two full years and it's made for a pretty big improvement.
47 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Achieved almost-remission mid October 2008 (rectum still inflamed)

16 Remicade infusions, current scheduled every 6 weeks: 1st: 7/21/07; most recent: 6/06/09; 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

New Member

Date Joined Jul 2009
Total Posts : 6
   Posted 7/12/2009 12:19 AM (GMT -6)   
I really do appreciate all the feedback I have been receiving.  Like I said I have been very emotional and distressed about the IV Remi.  I work full time and have a young child and life is just so hectic in general.  Sometimes I feel so alone.  It is so nice to have a forum to interact with individuals experiencing similiar situations in life. God Bless you all!  Any new or updated information info. or experiences with IV Remi would be greatly appreciated. 

Veteran Member

Date Joined Apr 2009
Total Posts : 654
   Posted 7/12/2009 8:17 AM (GMT -6)   
OMG! I just posted about the same thing two days ago.  We sound almost the same except I start remi July 23.  My doctor told me on tuesday that you can get pregnant and be pregnant while on remi.  You don't have to stop it.  It is a safe drug to use.  I was told the same thing that you can't stop it.  Lympoma cancer runs in my family and I'm scared too.  I have no other options left and I'm also not ready for surgery.  Good Luck!  Isn't UC fun? shakehead

Veteran Member

Date Joined Feb 2005
Total Posts : 6448
   Posted 7/12/2009 12:00 PM (GMT -6)   
I've been on Remi for quite some time and haven't had any side effects. My Dad has colorectal cancer, but I decided that Remi was a good choice for me and I'm glad I made the decision. Good luck with the decision!

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

New Member

Date Joined Jul 2008
Total Posts : 15
   Posted 7/12/2009 1:23 PM (GMT -6)   
I have been on remicade for 8 years now and i didn't realize that you couldn't stop it once you started it. Remicade has been the major medicine helping me these past 8 years. I was 15 when I started it so I just didn't think about stopping and starting it again.
23 yr. old female
diagnosed age 15, current meds: 100 mg azathioprine, iron, remicade every 8 weeks
have taken: asacol,colazal, prilosec, prenisone, rowasa + cortisone enemas, flagyl + vancomycin for c-diff
hospitalized three times: 2002 April (2 weeks) 2003 December (1 week) 2006 (1 week), have had pick line,
have had 3 colonoscopies, had blood transfusion Feb 2008

Veteran Member

Date Joined Jun 2009
Total Posts : 985
   Posted 7/12/2009 4:17 PM (GMT -6)   
I also didn't realize you couldn't stop once you start. I don't know that I will have health insurance after this year, so I'm not sure what will happen. My GI never explained anything about the drug to me, though. Anything I know is from looking it up myself.
26 year old female
Diagnosed with unspecified UC 11/08 by flex. sig. as I was pregnant at the time and did not want to be put under for a colonoscopy
Breastfeeding my baby boy (born 4/8/09)
10 mg Prednisone AM, 10 mg PM (tapering from 60mg a day)
Started Remicade 6/11/09 (2 infusions so far)
Was on Asacol (2400mg or 3600mg a day) for 6 months with no success

Elite Member

Date Joined Mar 2003
Total Posts : 10407
   Posted 7/12/2009 6:04 PM (GMT -6)   
It isn't universally true that you can't stop and restart Remicade. The issue is that about 50% of people will develop antibodies and it will either be ineffective or they will have allergic reactions and have to discontinue it.

I started Remi, then had to go off for almost a year because of insurance issues. I then re-started it and have been on it now for 3 1/2 years and in remission.
Ulcerative colitis forum co-moderator
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"

New Member

Date Joined Jul 2009
Total Posts : 6
   Posted 7/13/2009 12:00 AM (GMT -6)   
My doctor told me that Remicaid was a life long commitment.  I know that is one of the reasons I have been so scared about even starting the treatment.  The drug is also so expensive.  I have insurance, but the insurance company will only pay when I can schedule an appt. the same day with MY DOCTOR ONLY.  My doctor is only in the clinic at certain times and insurance says they will charge me 20% of Remi cost if I see another physician in his office.   The clinic only does Remi treatments on Tuesdays and Fridays.  My doctor is not even in the clinic half the time.  I work full time and have to drive over one and one-half hours to get to my appointments.  I have read replies on this forum where individuals have stopped and restarted the infusions.  I guess that is what is confusing to me.  My doctor told me that a person's body would develop antibodies once the infusion started and if ever stopped and restarted the body could see it as something as foreign and attack itself.  It really scared me.  I work full time as a RN.  I don't have any experience with Remicaid.  The only information I know about the drug is through my own research and the help of this forum.  I am worried about my health as well as my job.  I work for a school district and have a very big role in our school system.  I am married with a small child at home as well.  Everything just seems so hectic.  I am finding out more through you guys all the time.  Thank you again for sharing your experiences with me.  Any additional help or information is greatly appreciated. 
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