Dangerous Crohn's Treatment combination. Are You at Risk?

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gemini kiwi
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Date Joined Nov 2006
Total Posts : 1136
   Posted 8/16/2007 4:59 PM (GMT -7)   
   Not seen anyone else post this info yet so here goes.
   They keep changing the goal-posts don't they.
 
 
Tess

gachrons
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Date Joined Mar 2007
Total Posts : 4527
   Posted 8/16/2007 7:04 PM (GMT -7)   
Hi Thanks Tess always nice to read stuff. lol gail

D&G's Mommy
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Date Joined Jan 2005
Total Posts : 185
   Posted 8/16/2007 8:15 PM (GMT -7)   
Saw this myself and was going to post something. I was doing the 6MP and Remicade, switched to 6MP and Humira, then dropped the 6MP. I try not to obssess about the whole cancer thing, but I do get spazed out from time to time. Do most of you take Remicade/Humira in combo with Immuran or 6MP?
Cathy
Mommy to a 4 and 5-year-old
Currently on Humira.


ginger71
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Date Joined Nov 2005
Total Posts : 722
   Posted 8/17/2007 6:14 AM (GMT -7)   
My Dr. would not put me on anything with remicade. I started in June and he had warned me about it.
36 year old female. Dx'd and undx'd a few times. Was just redx'd again 04/2007.
History of rectal abscesses and fistulas (28 surgeries including abscess I & D, exploratory surgeries, 2 C-ton drains and 1 fistula plug) Count does not include self bursting abscesses.
1st Remicade infusion 6/5/07.  Lots of joint pain, and a new fistula since the 2nd infusion 6/19.
Praying I'll get better soon so we can have a baby.
Ginger :)


JudyK89
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Date Joined Dec 2006
Total Posts : 1986
   Posted 8/17/2007 8:03 AM (GMT -7)   
I would still like to see the study on this as my specialist told me that yes there is a higher incidence but only in a certain age group (young adults, of which I am not, lol).
Judy
25+years diagnosed with CD. 
Numerous surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, hoping for a long remission from this last surgery. 
 
 


petittarte
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Date Joined Apr 2006
Total Posts : 686
   Posted 8/17/2007 3:42 PM (GMT -7)   
I saw my doc on Wednesday and she wanted to take me off of the 6mp because of this but I refused. I haven't thrown up in months since going on Remicade and 6mp. I don't know if it is one drug or the other or the combination of both that is helping me but I am not willing to take the chance that dropping 6mp is going to start me throwing up for hours on end on a daily basis again. The benefits out weigh the risks for me.
Jodi

Remicade and 6MP


Hayleybaby
Regular Member


Date Joined Aug 2007
Total Posts : 76
   Posted 8/19/2007 2:54 PM (GMT -7)   
Oh my gosh, that's my doc that wrote that. I start on Humira tomorrow and I will not be put on anything else along with that.

I just have to say, this man is very smart and knows what he is doing and knows what he is talking about. He discovered my stricture back in May that my other GI failed to notice or acknowledge. I had my ileum removed and have recovered mostly from it.

This GI however is one of the #1 docs at the #2 Center for Digestive Diseases. And most articles I've read, the chances of developing lymphoma are greater for those who are taking either Remicade or Humira along with either Imuran or 6mp.

But everyone needs a better quality of life and its up to only you to make that decision once you know the facts.


30 yr. old dx with CD 10 years ago. Currently on folic acid and azulfadine.  Had ileum removed and resection May 2007.  Just started back to work after being off 13 weeks.  Still feeling lousy.  In the process of trying to get approved to start Humira ASAP!!!!  It scares me immensely!!!!
 
Allergic to: Asacol, Pentasa, Imuran, Paxil, Zoloft, Penicilian, Ampicilian
 
And prednisone does not work for me anymore!!!


CrazyHarry
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Date Joined Mar 2006
Total Posts : 1034
   Posted 8/19/2007 8:53 PM (GMT -7)   
excellent. i took both for years!!!! good thing i did the maker's diet and stopped taking remicade in january cos i was feeling better and decided on my own that i didnt need remicade any more. drugs have just screwed me up. i dont they ever helped me, only masked the symptoms. for example, if remicade is supposed to help prevent and heal fistulas, how come i got one from my colon to my bladder after being on it for several years at doses every 2 months? i dont feel it worked. sure i felt my best when on it and it allowed me to get off remicade, but truly feel it (and most if not all medications now) only mask symptoms and do not heal you like promised. in fact, they give you other conditions that require more/other meds. just look at prednisone. i know i am not the only one who ended up with osteoporosis from it and taking a whole slew of other meds to combat the side effects.

ok, that is my rant for today. thanks for listening.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
been on basically every med available, currently on colozal & 6-mp
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon


Jen77
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Date Joined Mar 2006
Total Posts : 2691
   Posted 8/19/2007 10:29 PM (GMT -7)   
Since I have Lymphoma in my family (my Mother and her Aunt) I'm scared to death of these drugs. I certainly don't want to trade my Crohn's for cancer. Really scary to me, which is why I try to keep things as calm as I can. Which I know we can't always control, but I try! Scares me that I may some day have to choose between these drugs because my Crohn's is so bad, and increasing the risk of a cancer that's already in my family! Hoping they find something better before then!
~Jennifer
 
Diagnosed with mild Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Asacol and Questran.


BullfrogKen
Veteran Member


Date Joined Nov 2004
Total Posts : 1351
   Posted 8/20/2007 3:28 AM (GMT -7)   
Ummm . . . Yeah, I guess I am at risk.

I've been on Imuran for over 2 years now, and started Humira the week it was approved, back in February. Been on both essentially all year now.


The past couple weeks I've noticed my lymph node are swelling up and getting painful. This weekend I see this article. Let's just say I'm not comfortable learning this . . . .


My GI appointment is tomorrow. I know that both these drugs can allow infections to develop, and one sign of fighting an infection is swolen lymph nodes. But, as I've not had a fever, or even any signs of infection at all . . . Yeah . . . as I said I'm kinda uncomfortable right now.

BullfrogKen
Veteran Member


Date Joined Nov 2004
Total Posts : 1351
   Posted 8/20/2007 3:37 AM (GMT -7)   
Since Humira is used to treat rheumatoid arthritis, I saw this during my research, published by the ACR. 
 
 
In the May 17, 2006 edition of JAMA a review/methodological paper was published that concerned the safety of TNF inhibitor antibodies (1). Little new information was presented in this review (see previous ACR Hotlines [2,3], and package inserts for these drugs). The story was widely distributed by the press, and caused concern among patients and prescribers of these agents. This ACR Hotline is offered to provide perspective and clarity regarding the safety of TNF inhibitors.
The infliximab label was recently changed to include a new indication for pediatric Crohn’s disease (CD). At the same time a new black box warning was added based on six reports of hepatosplenic T cell lymphoma (HSTCL). HSTCL is a rare and often fatal form of non-Hodgkins lymphoma that preferentially affects children and young adults, most of whom are transplant recipients receiving either azathioprine or 6-MP.
Regarding hepatosplenic T cell lymphoma: all cases to date among patients on TNF inhibitors have occurred in those with Crohn’s disease, all of whom had also received therapy with azathioprine or 6-MP. Nevertheless, rheumatologists ought to be aware of this very rare disease.

njguy69
Regular Member


Date Joined Jul 2006
Total Posts : 276
   Posted 8/20/2007 3:56 AM (GMT -7)   
I'm so grateful for being in remission that I'm not even going to worry about this. Even if it takes several years off my life, it'll be worth it being in remission. I'm not going to complain.
UC since 1986.

Asacol - six a day
6 MP - one a day.
Remicade - every eight weeks.

RON PAUL 2008


beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1091
   Posted 8/20/2007 12:10 PM (GMT -7)   
These concerns were discussed at the IBD conference I attended earlier this year.  From what I recall, there have been about 8-10 cases of hepatosplenic T-cell lymphoma out of thousands of people who've used 6-mp/imuran in combination with anti-TNF antibodies (remicade, humira).  So the odds aren't all that high, but tell that to the people who got HSTCL, right!  And while other types of lymphoma are treatable with some degree of success, there's no successful treatment for HSTCL.  So, yes, it's definitely a concern, but the odds of getting it still seem to be low.

CrohnieYogi
Regular Member


Date Joined Oct 2006
Total Posts : 367
   Posted 8/20/2007 2:38 PM (GMT -7)   

My doc is one of the top in the US as well (I thought that was just my opinion until I talked with some Pharma people and they told me it is fact that he is).  Anyway, he does clinical trials and is not afraid to try new and different things.  So I knew when I heard him say that the anti-TNFs should be used as monotherapy because of the lymphoma thing that it was serious.

He did mention that there have only been a handful of cases.  But stressed that if you can get by with anti-tnf as monotherapy, it should be used as such.


PS--I don't mean to frighten anyone.  I just wanted to pass along what I had heard.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 8/20/2007 6:31 PM (GMT -7)   
Hi Was wondering if anyone on this site has had this problem with the combo? lol gail

chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 8/20/2007 6:35 PM (GMT -7)   
Well, I have been doing the remicade/imuran combo for almost 3 years......I guess I will be giving my dr. a call in the morning!

Thanks for the info!

vadreamer1
Regular Member


Date Joined Aug 2006
Total Posts : 196
   Posted 8/20/2007 6:36 PM (GMT -7)   
I've been on Remicade a little more than two months now. Just recently dropped 6MP for the very reason mentioned above. While it was only 2 months, I still wonder. Only time will tell.

BullfrogKen
Veteran Member


Date Joined Nov 2004
Total Posts : 1351
   Posted 8/23/2007 4:35 AM (GMT -7)   
I asked about this at my appointment, and the doc said he'd check it out after he was done seeing patients. If it were a problem, he'd get back to me.

I elected to not change a thing, since the Humira/Imuran combo has given me the best quality of life I've had short of Prednsione. And I can't play around with that much anymore from the damage we've already seen occur.

bianca1
New Member


Date Joined Aug 2007
Total Posts : 5
   Posted 8/23/2007 8:38 AM (GMT -7)   
Hello, I have been taking Remicade and 6-mp together now for about 6 months...talked to my doctor yesterday and was informed that I would be of a higher risk getting sick if I discontinued one of these..I was also informed that there had only been a hand full of cases and that it pertained to people under the age of 21, which I am not...I decided to continue both but I sure do worry that I an doing the wrong thing....I feel like I am in between a rock and a hard place.....any advice out there?? 

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 8/23/2007 9:05 AM (GMT -7)   
I had to quit taking Remicade (serum sickness) because I quit taking 6MP on my Rheumy's advice. My GI specialist told me to fire him, because if he's going to read the research, read the entire study. He said I should never have been taken off of 6MP, my age group alone kept me out of the risk group, and the percentages were very low even in the younger age groups. If I had it to do over again, I'd take the 6MP, and continue taking it.

I ended up having to have surgery again because the CD couldn't be controlled by any of the other drugs. I was in chemical remission with the combination Remicade/6MP, it worked very well for me.

JMHO, a one rat study ;0)
Judy
25+years diagnosed with CD. 
Numerous surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, hoping for a long remission from this last surgery. 
 
 


bianca1
New Member


Date Joined Aug 2007
Total Posts : 5
   Posted 8/23/2007 9:50 AM (GMT -7)   
thanks alot Judy!!!.....You have made me feel better because I know that I would be in for a world of hurt if I chance discontinuing the therpay I am on... Some people I know that do not have Crohn's do not seem to fully understand why I am taking the risk with these medications but these people also did not see how sick I was six years ago either.

bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 8/23/2007 1:15 PM (GMT -7)   

I saw a new GI yesterday and had my first appointment with a Rheumy this morning.  Both of them want me on Remicade.  The GI wants to keep me on the Imuran at the same time.  I mentioned the increased risk of cancer to both of them, and specifically the increased risk when combined with the Imuran to the GI, and they both said that Imuran by itself increases my risk of cancer.  Oh joy.

I'm pushing back on the Remicade.  I'm just not ready to go there yet.  No, my Crohn's isn't controlled at the moment, and yes, the symptoms are unpleasant.  But let's give all the other stuff I'm taking a chance to work before pulling out the big guns.  I don't want to lose the option of Remicade later on when I may need it more.


bianca1
New Member


Date Joined Aug 2007
Total Posts : 5
   Posted 8/23/2007 1:20 PM (GMT -7)   
I am doing very well right now with Remicade and 6-mp but I can't help but wonder should I stop one of them in case I need it more later on down the line but then again I am afraid if I do stop one I will get sick quickly............I guess no one knows 100% sure what decision to make on these issues...
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