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Remicaid Help!!!!!

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Ulcerative Colitis
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Posted 7/11/2009 5:42 PM (GMT 0)
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

Posted 7/11/2009 7:20 PM (GMT 0)
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!
Posted 7/11/2009 8:29 PM (GMT 0)
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.
Posted 7/11/2009 8:41 PM (GMT 0)
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.
Posted 7/11/2009 11:09 PM (GMT 0)
I've tolerated Remicade well for two full years and it's made for a pretty big improvement.
Posted 7/12/2009 5:19 AM (GMT 0)
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. 
Posted 7/12/2009 1:17 PM (GMT 0)
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
Posted 7/12/2009 5:00 PM (GMT 0)
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!
Posted 7/12/2009 6:23 PM (GMT 0)
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.
Posted 7/12/2009 9:17 PM (GMT 0)
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.
Posted 7/12/2009 11:04 PM (GMT 0)
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.
Posted 7/13/2009 5:00 AM (GMT 0)
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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