Risks of Remicade are scaring us

Has anyone on Remicade read the latest FDA update on cancer risks associated with use of this med?  I saw this article posted on another site and is has scared the heck out of me... especially with my child being on this med.  Her next infusion is tomorrow!  She is doing so well on it...but now we have to worry about the possibility of a fatal cancer?  OMG.  WHAT TO DO???  At the time we started Remi (last winter), it felt like our only option other than surgery.  I hope it's okay that I post a link to the article here.

http://www.fda.gov/Safety/MedWatch/SafetyInformation/SafetyalertsforHumanMedicalProducts/ucm251443.htm#.TrVacZJWZ2s.facebook

 

I'm due to start Remicade sometime soon. The risks scare the hell out of me too. But from what I understand the risks are really not much more than the risk of someone getting cancer who isn't using it. The only other options for me are to stay on Prednisone...no... or surgery, and surgery is not a cure. I could be lucky and have 20 years of remission, or it could come back in 2. The one thing I tell myself is advances in medicine are coming and one day we could have a cure, or at least a medicine that is very effective and very safe.

It's a bit scare-mongering that article, IMO. It makes it sound like that getting lymphoma is likely, when it really isn't. Not in the general scheme of things. The risk of getting lymphoma on Remicade alone are practically no higher than if you are not on Remicade. You really shouldn't worry about monitoring your daughter for cancer! (She's off the 6-MP now, I presume?)

I'll give a quick example of a statistical risk which sounds scary, but isn't really. If you've got a brother or sister with Crohn's, the likelihood of you getting it is 30x higher than the general population, which sounds absolutely massive, right? You would probably think you've got a high chance of getting it. But if you look at the numbers, the overall chance is still very low: if, say, 20 in 100,000 people per year get Crohn's then a 30x higher risk means a 20x30 in 100,000 chance of getting Crohn's, or 600 in 100,000. Not insignificant, but still under a 1% chance of getting Crohn's.

The statistical risk for getting lymphoma from Remicade specifically will be a lot lower than that, I should imagine. I dunno if that helps at all, but I thought I would mention it.

MoobyDoo, on the copy of the FDA article it doesn't appear to mention the fact that those at the highest risk are teenage/young adult males, and as NCoT stated, be on a TNF blocker and immune suppressant, so again your daughter's risk is reduced because she is female.

 Unfortunately a few may get unlucky, all any of us can do is carefully weigh up all the risks

My understanding is the same as the others, that together, remicade and imuran or 6mp increases risk for that fatal type of lymphoma, but the risks are still so low. I've heard of one person who developed skin cancer while doing both treatments, but I don't think it's fatal and the person says it was from the imuran, not even both together.
Cancer is a top cause of death world-wide, for the healthy and the sick.
Try not to worry. Was this treatment your last option?

I really understand your concern about the remi for your daughter. It´s one thing taking decisions about your own meds another deciding for your daughter.
I´ve read that having crohns with a high degree of active inflamation also can lead to a higher risk of cancer. So I agree with the others here If it´s really nessesary don´t hesitate.

Wish you luck!

73monte, as a 27 year old who is not doing well on mesalamines and in all likelihood will not tolerate 6mp or any of the immunosuppressants, I feel your pain. I'm am an extremely pessimistic person by nature so I can't believe I look at it like this but I do.

Someone not too many years ago would be saying "I can't put my child on immunosuppressants, what if they don't work, there's nothing else." I put faith in new treatments, especially new stem cell drugs like Prochymal. They have shown great results through years of trials and hopefully will soon be a more effective and safer alternative to all the biologics.

I hope I'm not deluding myself, anyway

Thanks for all of  your replies. Just for a short history, at the time we chose to put our child on Remi, we had exhausted Prednisone, Entecort, Pentasa and 6MP.  We had tried EO28 Splash and she out and out gagged and refused to drink it.  A feeding tube seemed like too much of an extreme, life-altering option and scared the hell out of her...to traumatic for a child to think she had to have a tube hanging out of her stomach.  She was doing so-so on the 6MP as far as symptoms (even tho we did not feel comfortable with her taking that med either), but her scope showed progression of Crohn's which led her doc to say surgery was a likely event in the not too distant future.  Remi was our last option at that point, other than to go "med-less" and try a more natural approach like STD.  With a child who is a very very particular eater, STD was not an option as we knew she would not cooperate with such a drastic change. (stubborn kid).  We read up on the Remi, and altho we did not like the risks, felt it was our only option.  She had her 8th infusion yesterday. Her bloodwork is perfect. Her weight is back to normal. She is growing again.  Life is good.  I pray it stays that way.  Her GI doc said studies have shown that those who start Remi earlier in life have been shown to benefit more from it than those that start at an older age.  He also said most of the cancer cases have been in males (28 of 30 cases) and that most are while taking more than just Remi alone.  He also mentioned that the mobidity rate is much higher with prednisone, and the risks are higher with 6MP than Remi.  Turns out, according to him, that Remi is actually the safer option out of the other meds we had tried.  He did also mention that there are at least 2 new meds coming down the pike in the next few years.  They, too, though will be IV/infusion or sub-Q injections. No oral meds coming out at this time, as it appears the oral meds are quickly digested and do not provide lasting benefits.  I too, am hopeful, as others mentioned here, that new better, safer meds are in her future.  Our GI Doc appears hopeful due to the massive amount of research being done on IBDs.

So for now, we continue with Remi and try not to live in fear.