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Important statistics on anti-TNF and Imuran/6-MP

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Crohn's Disease
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Posted 7/20/2011 6:16 PM (GMT 0)
http://www.ccfa.org/webcasts/Risk%20and%20BenefitsTranscript.pdf

Thought I should post this for people hesitant about both drugs as I am one of them. smilewinkgrin (Possibly starting either Remi or Humira for a perianal fistula, whilst on Imuran)

It's a good 20 minute read, but a very good one at that and should put your mind at ease, well it did for me.

Post Edited (IAmTheWalrus) : 7/20/2011 12:19:31 PM (GMT-6)

Posted 7/21/2011 3:54 AM (GMT 0)
Thank you so much for this article post! My husband is currently on Humira and contemplating starting 6mp as well. We think the potential benefits of his Crohns being in remission and getting his quality of life back is worth the risks.
Posted 7/21/2011 8:19 AM (GMT 0)
 

Thank you, it is an interesting read.

I am not totally convinced though, mainly in part because of son's age(18) and a 'higher risk' group.

Thankfully he is not at the stage where he needs to consider taking Azath/Rem and if he was I guess quality of life would play an important factor.

Posted 7/21/2011 1:00 PM (GMT 0)
Yes I would say the benefits outweigh the risks only if these drugs work well long term. The statistics for long term efficacy aren't as encouraging.
Posted 7/21/2011 2:47 PM (GMT 0)
When my husband first started remicade in 2008, he was in the hospital with c-diff and crohn's, and had lost about 50 lbs in the hospital, was completely emaciated, and was facing surgery. Remicade brought him back home, and gave us a normal life. We've had a few ups and downs, but on the whole, we've been able to live a normal life the last 3 years, I'm sure largely due to Remicade.

Yes, there are lots of risks, and they are scary, but when your quality of life is horrible, it is completely worth taking the risk. Being horribly sick with Crohn's comes with lots of risks as well. Also, in terms of long term efficacy, I think my question would be, what is long term? I think the longer you can put off surgery (with good quality of life), the better you'll be, and these drugs give us that chance.

My husband has now had slightly more than 3 good years on Remicade. I wish he'd have another 50. :-) That likely won't happen, but my 3 years have been a God send.
Posted 7/21/2011 4:08 PM (GMT 0)
PV- My concerns are not so much about either/or Azath/Rem (son on azath) but being on the two together. Despite initiial concerns with Azath it has got son in a good place as has Rem with your husband, but taking the two drugs together, I don't think so.
Posted 7/21/2011 6:50 PM (GMT 0)
Thank you, Walrus. That's a really good article: clear, direct, and easy to understand. I really appreciate your having posted it here.
Posted 7/22/2011 12:17 AM (GMT 0)
Vixen-may I ask why the two types of meds you wouldn't do? From how I understood it, theres an increased chance of cancer and all the other side effects with any of the meds such as Rem, Humira, 6mp etc. And there's more increased chances of cancer if used together. I'm asking because quality of life for my husband right now is 0 on a scale from 1-10. He wants to start 6mp in addition to Humira because he's sick of being sick. I worry about the side effects, but its so hard to see how much pain he's in. Is there any feedback you can give me.....thanks!
Posted 7/22/2011 3:17 AM (GMT 0)
Interestingly, I had Dr. Siegel as an intern/fellow at Mass General when I had my surgery. Good guy. Knows his stuff.
Posted 7/22/2011 4:36 AM (GMT 0)
It is unknown if it was caused by one, both or even by the drugs at all, but while I was on both Remicade and 6MP I was diagnosed with thyroid cancer. I do not regret going on the Remicade, even if it did give me cancer, because it largely increased my quality of life.

Everything has it's risks. You just need to weigh them against the benefits of the proposed action you are taking.
Posted 7/22/2011 6:26 AM (GMT 0)
Thanks, IAmTheWalrus, for posting that link. I found it very informative.

One thing I learned aside from the info on risks and side effects of Remicade and other like drugs is "There’s something in the body of patients with Crohn’s disease and ulcerative colitis that want to cause this inflammation. So medications like the anti-TNF medicines, such as Remicade, Humira and Cimzia.... are given to patients to try to block the inflammation to prevent that from occurring. Dr. Corey Seigal.

Sounds logical to me! smilewinkgrin


Posted 7/22/2011 8:50 AM (GMT 0)
madigascar-because I am pessimistic ;) I am joking there but equally there is a ring of truth to it.
I think it was on this site(although it could have been one of the others) that someone posted a link to an update from the FDA US Food and drug administration re a safety review update on Hepatosplenic T-cell Lymphoma in adolescents and young adults. Although this cancer is not exclusive to people using TNF blockers and azathioprine/mercaptopurine together it appears that there are more cases in those that use the two.

Not knowing anything about Hepatosplenic T-cell Lymphoma I did a search about that and came across a page(not on a main site as such) where people had posted re their experiences(all(or most) having lost someone/or had relative fighting this cancer on these drugs) and if my recall is correct all of them being male. They were all urging people to contact the FDA to ensure that cases were reported.

I totally appreciate that in the grand scheme of things the actual percentage of those that contract this cancer is relatively small and if quality of life in non existent and a mix of drugs can improve that situation then individuals have to weigh up the risks and benefits for them.

I hope that he finds relief soon
Posted 7/23/2011 4:57 AM (GMT 0)
Thanks vixen! At first when his GI mentioned Humira, I was like hell no...then when his cd just kept getting worse and life was just unbearable, I realized I rather have my husband for a shorter timeframe living and enjoying life than a long miserable life. he's truly a warrior in my eyes...you all are...
Posted 7/24/2011 12:31 AM (GMT 0)
Thanks, All. I'm learning a great deal from the discussion. tongue
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