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FDA update on TNF blockers, azathioprine and/or mercaptopurine in adolescents/young adults

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Crohn's Disease
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Posted 4/19/2011 6:53 PM (GMT 0)
The beginning of this alert:

"The U.S. Food and Drug Administration (FDA) is informing the public that it continues to receive reports of a rare cancer of white blood cells (known as Hepatosplenic T-Cell Lymphoma or HSTCL), primarily in adolescents and young adults being treated for Crohn’s disease and ulcerative colitis with medicines known as tumor necrosis factor (TNF) blockers, as well as with azathioprine, and/or mercaptopurine."

Read the entire alert here: http://www.fda.gov/Drugs/DrugSafety/ucm250913.htm

Posted 4/20/2011 12:57 AM (GMT 0)
Thanks for posting, Ides. 
Posted 4/20/2011 1:08 AM (GMT 0)
Thanks for posting. I don't understand why in the chart on the bottom for humira the ages of the ones with the cancer was 61 and 70 so why does it say adolescents
Posted 4/21/2011 4:00 AM (GMT 0)
Lovely. I took 6MP and Remicade at the same time for a while. I stopped both two years ago. I still fear that I might develop cancer from it. I don't care how bad I get, I refuse to go back on those medications.
Posted 4/21/2011 4:21 AM (GMT 0)
bosnianboy- You and I are totally opposite in the way we think. I was actually on both 6MP and Remicade, just as you were, and developed cancer. I would do absolutely anything to go back on Remicade even though it may have caused my cancer. My Crohn's is out of control, I have no quality of life and have been basically homebound for the past year. Booo.
Posted 4/21/2011 4:26 AM (GMT 0)
RiddleMeThis..I'm sorry to hear that you developed cancer. But now you have to deal with both : / I'm sorry that you're going through that. I really don't want that to happen to me. I'm only 20 years old and not done with school yet. Did you develop it while on it or after stopping it?
Posted 4/21/2011 4:32 AM (GMT 0)
I actually already beat the cancer luckily! I'm only 21 and still in school too! I developed the cancer while I was on both Remicade and 6MP. I had been on 6MP for a good long while and only had Remicade for a few months. When I was diagnosed with cancer, I had to immediately go off all Crohn's meds, thus the major flare up of Crohn's.

I had no cancer symptoms or anything...so sometimes its hard for me NOT to compare cancer with Crohn's. I can honestly say I was rather deal with another round of cancer than continue with my severe Crohn's symptoms.
Posted 4/21/2011 4:43 AM (GMT 0)
You're a strong person Riddlemethis. I'm still in school as well. I know how tough dealing with Crohn's Disease can be. I've been dealing with a bad flare up for a while now. We just need to keep our heads up and keep smiling everyday : )
Posted 4/21/2011 4:14 PM (GMT 0)
This kinda worries me, but I'm going to keep going with Remicade. I had taken imuran for a year and was off it for 4 months before starting remicade, so hopefully nothing will happen. I'm already feeling much better with remicade than anything else I've taken *knock on wood*
Posted 4/22/2011 1:25 AM (GMT 0)
Well that's alarming. I've been on pretty much all of those. Whatever, if it happens, it happens. It was a good decision at the time and there's nothing I can do about it now.
Posted 4/22/2011 10:21 PM (GMT 0)
Great. Doc is recommending an anti-TNF for me. Statistically, how common are these cancers for folks taking an anti-TNF?
Posted 4/22/2011 10:27 PM (GMT 0)
Chris B. I honestly do not think it's too common. I'm sure it also all depends on the person. Perhaps a person who has a family history of cancer is more like to develop it than someone who doesn't. Also, the chances increase if you're doing a dual therapy. Dual therapy would be taking two immunosuppresent drugs at the same time i.e, 6MP and Remicade or Remicade and Humira. Something along those lines. For me, at the time, taking an anti-TNF gave me my life back. Albeit, it doesn't work anymore, it was worth it at the time. I was taking 6MP and Remciade at the same time for almost five years. So far I'm alright. I've realized that cancer is a side effect of everything now! You eat too much processed meat you'll get colon cancer, smoke too much, lung cancer. Being around some chemicals..cancer. When I went into 6MP and Remicade, I said to my self. Screw it, just do it!
Posted 4/23/2011 1:42 AM (GMT 0)
Wish it had some data for any deaths from Cimzia...ah well. I think my doctor had told me there was less than 5 people who had died from taking Cimzia. I think the chances of getting cancer from these meds is still extremely small, but still something to definitely consider before going on them.
Posted 4/23/2011 4:49 PM (GMT 0)
Thanks for posting this, it's such a good reminder for me why I personally have to avoid all the medicine supressing the immune system.
Posted 4/23/2011 5:57 PM (GMT 0)
Wow. That's scary...thanks for posting. I spent 8 years on Imuran and just started Remicade. GI wants me to stay on both, but I think the risk just isn't worth it...
Posted 4/25/2011 12:36 AM (GMT 0)
Cancer is already an epidemic with at least one in five destined to contract it. We should try our best to lower the odds with proper nutrition, frequent checkups (including colonoscopies) and perhaps checking our vitamin D levels. The last thing we need is to artificially suppress our immune systems unnecessarily.

Of course if there are no other alternatives then we have no choice; but at least perform some rudimentary research into other therapies. For example there is reason to believe that antibiotics with probiotics can jumpstart remission:
www.medscape.com/viewarticle/731851

Then there are rectal meds such as Rowasa enemas. And there is LDN, (most doctors are not even aware of LDN).

The problem is that some doctors will prescribe biologics before other alternatives are exhausted. If immunosuppressants are the only means to attain a quality life then OK, but don’t let your doctor lead you down a slippery slope with toxic side effects without at least first checking out other alternatives.
Posted 4/25/2011 3:14 AM (GMT 0)
the risk is low, less than 1%

i was on remicade for a year and have had a small, palpable lymph node in my neck for a while now, I HOPE IT'S UNRELATED!
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