Second thoughts about Remicade

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Boxermom2
Veteran Member


Date Joined Dec 2008
Total Posts : 601
   Posted 8/13/2009 9:40 PM (GMT -6)   
I had my first infusion on August 5th.  I feel no better.  Everyday I read more and more about the medicine.  I have an appointment on August 19th for the second dose.  As of tonight I am having second thoughts.  I am so scared about this stuff.  I just don't know.  I know my quality of life sucks right now but I am flipping out.  I was reading about two sisters with Chrons who used Remicade and both got Melanoma.  I upped my Asacol to 12 daily and am starting the Rowasa again.  I just tapered off my steroids for the second time since December.  Wondering if I can knock it out with Asacol and Rowasa. 
 
Any thoughts?

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 8/13/2009 10:43 PM (GMT -6)   
Well, all I can say is talk to your doc. I've been on Remi for about four years now and am doing very well.l My doc chose to go to the stronger meds and then taper down. I just had a colonoscopy on Tuesday; I'm in total remission with no ulcers or polyps. My quality of life is good, so I'm happy with the choice I made. But, that said, everyone must make their own choice on how to battle this disease. I always think being informed and educated is very important.
Carol

Remicade - will have my 30th infusion on September 2 
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


sirenshooter
Veteran Member


Date Joined Jun 2009
Total Posts : 2012
   Posted 8/14/2009 12:03 AM (GMT -6)   
I haven't taken it but August 5th seems recent and I hear it takes awhile. Also, yes, you can always taper down after a while if you want.

Is asacol the only thing you're on other than enemas and remi? I'm on imuran and it's great.
19yr old female diagnosed with UC (pancolitis) in 2005 at age 15
125mg Azathioprine 1xday / 1 Mesalamine enema every night /
2000mg Fish Oil 1xday / 500mg Turmeric 3xday /
450mg Boswellia 1xday / 400IU Vitamin E 1xday
Arthritis in both knees
Also: asthma, acid reflux, and Reynaud's Syndrome


qazwsx12
Regular Member


Date Joined Nov 2008
Total Posts : 63
   Posted 8/14/2009 12:25 AM (GMT -6)   
Remicade/Humira never really concerned me much. Cancer risk still seems really low even when doubled, something like 1 in 10,000 if I remember right. I guess the more years I was on it, the more paranoid I'd get though. I wish they would of worked well enough for me, I would have taken them long term.

AmyWaffle
Regular Member


Date Joined Jun 2009
Total Posts : 173
   Posted 8/14/2009 8:43 AM (GMT -6)   
My doctor told me before starting Remicade that the chance of lymphoma (the cancer most people worry about with Remicade, I think) is 1 in 800 patient-years. I am not super familiar with the unit "patient years," but I can guess what it means.
He said other risks are very low, especially if you are younger and don't have other issues besides UC.
Also, from what I understand, it isn't a great idea to go on and off and on remicade because your body can develop antibodies to it. I would definitely stick with it just to see if it works so then you know.
Too bad it didn't work for me, but I hope it works for you!!
UC since 1996 (age 20)
Mommy of 2 sweet little girls.

Asacol (12/day)
Azathioprine (175 mg)
Prednisone (currently 80 mg)
Rowasa nightly
Immodium daily
First Remicade 6/22/09 [discontinued 8/12/09, not helping]


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 8/14/2009 8:48 AM (GMT -6)   
I know someone who was on Remicade for RA and developed Remicade induced lymphoma. She was taken off Remicade and the lymphoma went away.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Boxermom2
Veteran Member


Date Joined Dec 2008
Total Posts : 601
   Posted 8/14/2009 9:20 AM (GMT -6)   

Thanks for all they replys.  I know it is my last resort and I trust my doctor.  He did mention Imuran also along with the Remicade.  I read posts that said the Remicade worked after one infusion and mine definitely hasn't.  I guess I am just nervous.  I was really fine with it until reading the horror stories on the internet.  I went septic from an infection when I was on the steroids and just worry about another infection while on the Remicade.  I work in an Assisted Living Facility and people are always sick.  I come into contact with a lot of people. 

 

I have been flaring since last December and need to get into remission.   My doctor is away on vacation.  I think after I talk with him again it will settle my nerves. 


Asacol 12 daily
Zoloft 50mg
Multivitamin
Flaxseed Oil capsules
Rowasa
Remicade
Boniva
Hydrochlorothiazide 12.5mg
Prednisone 40mg
 
 


NiRo
Regular Member


Date Joined Aug 2009
Total Posts : 198
   Posted 8/14/2009 9:24 AM (GMT -6)   
I have never been on Remicade, but from what I have read in trying to learn about this disease is that it can take up to 3 infusions for it to kick in.
Lialda 4x a day
Rowasa Enema 1x at night
Align (Probiotic) 1x a day
Fish Oil 4x a day
Multi-Vitamins (includes B-12, Vitamin D, Vitamin C) 1x a day


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 8/14/2009 10:21 AM (GMT -6)   
I've not been on Remi either, but how quickly it works varies from person to person, so don't give up on it yet! As to the cancer risk, lymphoma is the one that's of most concern, and the risk does double, but only from 1 in 10,000 to 2 in 10,000. I have already decided I WILL use Remi if the 5ASA's fail me (my doc thinks it's better to go to Remi after 5ASAs instead of the 6MP/Imuran).
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


NiRo
Regular Member


Date Joined Aug 2009
Total Posts : 198
   Posted 8/14/2009 12:13 PM (GMT -6)   
Boxermom,

I found this link off the ccfa.org website. I think it's worth a look for you:

http://www.visualwebcaster.com/vwp/player/advplayer.html?id=57062

Hope it helps.
Lialda 4x a day
Rowasa Enema 1x at night
Align (Probiotic) 1x a day
Fish Oil 4x a day
Multi-Vitamins (includes B-12, Vitamin D, Vitamin C) 1x a day


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 8/14/2009 1:31 PM (GMT -6)   
     My doctor was pushing Remicade when the 6MP didn't seem to be doing the trick.  I did a lot of reading about it and it definitely is NOT for me.  I was exposed to the TB virus back in the 60's when I worked in a hospital lab and test positive for it on my skin test but my chest xray is negative.  Which means that it is lying dormant somewhere inside me and Remicade could activate the virus and I sure don't want that.  As a matter of fact, my GI's associate even agreed with me!  Now my GI doctor said that there were some fatalities on patients that were on the 6MP and received Remicade.  My main problem is ulcerative proctitis and believe me, it is one stubborn disease.
     Boxermom...I see you take flaxseed oil.  Any luck with that and what type do you take...the one with lignans?
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 8/14/2009 1:43 PM (GMT -6)   
I tried to knock it out for more than 20 years, and only Remicade has worked.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow


Boxermom2
Veteran Member


Date Joined Dec 2008
Total Posts : 601
   Posted 8/14/2009 4:47 PM (GMT -6)   
NiRo thanks for the link.  I checked it out and was very informative and eased my mind a little bit.  Thanks for the info.

 
39 yrs old ( diagnosed UC 2002)
Asacol 12 daily
Zoloft 50mg
Multivitamin
Flaxseed Oil capsules
Rowasa
Remicade
Boniva
Hydrochlorothiazide 12.5mg (hypertension)
Prednisone 40mg
 
 


flmom
New Member


Date Joined Jan 2009
Total Posts : 9
   Posted 8/14/2009 10:10 PM (GMT -6)   
Feel the same way you do....went a couple of years without a drug that worked.  In fact, several drugs I had a severe reaction to. So of course that left me wondering if this drug would work.  As of last Friday, I had my third Remi infusion and WOW what a difference. It has given me an amazing energy level and made my BMs actually normal!!  My only concern is the reduced immune system, which is totally battling. I went on antibiotics because my lymphnodes were about to explode and the augmentin helped immedidately. BUT it was horrible on my body. I was worse off than usual going at least 25 time a day. Awful! 
 
So far.....I LOVE IT....it has been a life change and great.  I do have two very young children and doubt my ability to stay healthy, but so far this is the best thing yet.

WIMOMOFTHREE
Veteran Member


Date Joined Apr 2009
Total Posts : 654
   Posted 8/15/2009 4:56 PM (GMT -6)   
I just had my second infusion of remicade on August 5th.  My first infusion I had chest pains and I felt like I was going to pass out.  My second infusion they premedicated me and I was fine.  I get really bad heart burn for about a week after the infusion.  I feel the same way.  I'm so scared being on this medication.  I know this is my only option left(then Humira, then surgery).  Like right now my three kids are sick.  I'm getting it and it scares me.  I'm on 15 mg of pred still and tapering down.  I'm scared all of a sudden I will get really sick.  The day after my remi infusion.  I used the bathroom about 15 times that day.  I usually only go 2-3 when on pred.  This happened my first infusion too.  I also keep thinking I will get lymphoma.  I always think I'm going to die from the medication side effects not UC.  I have three kids and it scares me.  I kind of want remi to work but then I'm scared to stay on it also.  When I'm on pred I feel normal again and when I'm not my quality of life sucks.  I can't go anywhere or do anything with my kids.  I also don't want to take medication that will make me sick.  I will just have surgery then.  Know that you aren't the only one going through this.  Good Luck!
Mom of Three(Two Boys and One Girl)
29years old
Ulcerative Colitis(severe whole colon)
Diagnosed March 2009
Allergic to Asacol, Lialda, and Imuran
Currently on Pred and Remi
Remi not going to well!(I think I had a reaction the first infusion they want me to try again)


Boxermom2
Veteran Member


Date Joined Dec 2008
Total Posts : 601
   Posted 8/15/2009 5:21 PM (GMT -6)   
WIMOMOFTHREE: I bet you are scared especially with having three kids. I am still scared but the link a few threads up from NiRo for the CCFA webcast made me feel a little better.

I have been on and off the prednisone since December. As soon I as stop it comes back. I just decided now that I might rather be in the bathroom all day then feel like I do on the steroids. They just make me crazy, bloated, sweaty and everything else. I just couldn't take it any more. Just had another bone density test done and my spine is 5.8% worse than last time. The steroids are attacking my spine.

This is my third flare. The other two landed me in ICU and I was pretty sick. Missed 8 months of work. This time it isn't good but it is a functioning flare. I can still work. It is tense though not know if I am going to have an accident.

I am going to stick it out with the Remicade for now. I just want a decent quality of life back. I just hope it kicks in and starts working for me. Keep me posted on how you make out with the infusions. Good luck.
 
39 yrs old ( diagnosed UC 2002)
Asacol 12 daily
Zoloft 50mg
Multivitamin
Flaxseed Oil capsules
Rowasa
Remicade
Boniva
Hydrochlorothiazide 12.5mg (hypertension)
Prednisone 40mg
 
 

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