Life expectancy on Remicade.

     Or walking across the street and getting hit by a truck?  That is what a doctor in the hospital said to me when I first refused to let them put a PIC line in..lol.  Geez...ever see that form you have to read and sign to let them do that?  Scared the living crap outta me!  I flat out refused, so a few hours later the doc came back in and asked WHY I refused....I said.."Take a gander at that sheet I have to sign...like signing my life away!"  He said.."There are risks in life, you could walk out of here and get hit by a truck."  Like his logic?

     By the way...I let them put the PIC line in.

Christine1946 said...

Or walking across the street and getting hit by a truck? That is what a doctor in the hospital said to me when I first refused to let them put a PIC line in..lol.

I can't believe a doctor would say that. What's the point of exercising, eating healthy, and not smoking then?

I think I would have replied, "What's the point of putting in a PIC line if I'm going to hit by a truck when I'm walking across the street."

And if the doctor replied that I would be able to have my colon for longer, I would reply, "then take it out, because I have no plans to get hit by a truck when I'm walking across the street."

I'm sorry, but my maternal grandmother got hit by a truck when she was walking across the street and died. And my dad got hit by a car when he was walking the dog and died. I have no plans to get hit by a car or truck or motorcycle or anything else and die.

My boyfriend has crohns and his doctors told him that remicide wasn't a good idea because it causes cancer. Also I just had a client who told me that they had a friend pass away in 2005 from complications with remicide. It compromised her immune system and cause a bacterial infection that lead to a brain seizure that eventually lead to brain death.

geez this post scares me now!! i didn't even consider if it could shorten my life. ahh. i asked my infusion nurse about her longest remicade patient and he's been on it 10 years. she said he's older and is doing very well. i know the drug hasn't been around long but i hope i don't get cancer from it.

This thread is an emotional roller coaster to read.  One has to put the risk in perspective.  The chances of getting a cancer from Remicade are very small.  Someone here can post the % but it's a relatively small number in my opinion.  I don't have a problem with what the doctor said.  He was trying to say that with life there are certain risks.  We deal with them everyday.  When I started on Imuran I asked about all the complications patients have had in the past (the clinic treats a couple thousand patients on 6MP or Imuran or Remicade).  He said that he couldn't think of patients who have had problems with the meds. He said there is more of a chance of getting hurt in a vehicle accident than having a problem with Imuran.  But I still drive right?  I got his point and I can respect that point of view. 

Again someone can post the statistics on the % of problems, it's very small.   Again that's my opinion.

MyUC

Are there any studies that show the mortality/morbidity associated with remicade use? That would be interesting to see. My doctor at the mayo clinic said around 3% have serious problems, mostly with infections.

Here is the only thing I could find:

www.scdrecipe.com/blog/archive/2006/10/22/novel-therapies-create-new-morbidity-remicade-etc/

Dr Stange said...

Some fatalities in the relevant studies, including Accent I, prompted a more systematic study and in those, including the Mayo Clinic patients or the Stockholm-area patients, mortality ranged up to 2% to 2.8%, much of it related to severe infections.

In addition to the side effects and increased chance of death, Dr. Stange pointed out that drugs such as Remicade actually don't work that well:
Efficacy of these novel agents is limited and usually only in the
range of 40% remission. These rates decline further in the long-term and
after 1 year they often are in the unsatisfactory range of 20% to 30% of the initial population.

I don't know if these numbers are accurate, and this article is a bit old (2006) but they do make you think.

For the person who said "I am on remicade and I don't like it but what are you going to do. Like my doctor said when people use to get crohn's or uc they would usually die by the time they were 40. She said because there was no way to treat it. You can't just leave it."

You can get it taken out.

My doc has had no patients on Remicade who have developed any cancers.
I would rather have a shorter life than one filled with pain and anxiety, anyway, but that's just me.

I am lucky to be in the percentage of patients for whom it is exactly what we needed. I FEEL so much better! And I have been in good health and have strong healthy genes otherwise, except for the UC (caused by taking Accutane), so I expected to be able to manage with a less robust immune system.

So the CCFA article says that 1 out of every 250 people that take remicade will die from some kind of serious infection. Fairly rare, but still pretty high. The article however says nothing about morbidity. How many people suffer from chronic recurring infections or other debilitating conditions that aren't fatal?

My Doc at Mayo said about 3% of patients develop serious infections. Some are chronic and difficult to treat fungal infections (like valley fever here in Arizona), that, while they may not kill you, will make your life miserable.

I wouldn't want to overstate the risks of remicade, but I wouldn't want to take them too lightly either.

i think the thing you have to think about with stuff like this is, is the help from the medicine worth the side effects, known and unknown. When you have medicine that has been around for a really long time, like morphine or pennicillin, then the effects are known and have been studied and they can tell you pretty much everything about it. however they still have risks too.
and you could die in a car accident, is that risk enough to keep you from driving?

Good grief, I think this thread was revived to give me a heart attack today.
My thoughts on remicade are always in flux, I am very scared of it for my daughter. However, I know of MANY children who were failure to thrive, wasting away with Crohns who were able to get a second chance at life because of this drug. In these cases, there's no point in thinking about the unknowns because there likely weren't any other options.
At the same time, I don't think they have any idea of what the result of this drug is going to be 20-30 years down the road. Perhaps nothing at all, or maybe an epidemic of cancers. I can say if it were me I would take remicade and enjoy the hopefully good QOL I would get from it. For a child, I think surgery is actually the more conservative option. Anyone agree with this or is this just nuts?
We met with a surgeon yesterday and he pretty much said as far as remicade is concerned it's a very powerful drug which works well for some kids but they do not know the long term outcomes with this drug but that they have been doing colectomies for a very long time and there are risks of course but they know the outcomes. Might be that's his perspective as a surgeon.
I do know that remi does not work forever and eventually they will have to increase the dose, add and immunosuppressant etc to extend its efficacy. It's also less effective in UC and often requires a higher dose than 5mg/kg. So, it's likely a temporary measure unless you are one of the lucky few that gets kicked into a very long and solid remission with it.
Very frightening.

There are other countries that use Remicade early on as a way to gain control of a severe flare and heal the damage. Once things are stabilized, they step down onto something else. It really is a miracle drug for so many people who were otherwise refractory. My young son has been on it for over a year now without ANY issues. However, we are planning to step down from it in the next year.