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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Right, Honest answer... Whats the chances of me dying on Remicade??


 
04-07-2013, 11:27 AM   #1
Danico85
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Right, Honest answer... Whats the chances of me dying on Remicade??

Hi There

Ive decided im going to ask my doctor if i can try Remicade. Ive been on nearly every tablet available and nothing seems to be shifting my flare.

Ive heard some great things about this infusion, but ive also heard of people dying. Im currently on Asacol / Azathioprine and Predfoam.

Whats the chances of me dying through taking Remicade?

Thanks
04-07-2013, 11:58 AM   #2
alex_chris
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Nobody can give you a chance of death from remicade. Yes, Remicade can have severe aide effects, that's why you only use it if other treatments fail.

Here is a site with details on the various side effects and percentages on how many people were affected http://www.rxlist.com/remicade-side-...rug-center.htm.

You can die of any number of things. If you are a smoker or a heavy drinker you got a much higher chance of dying that by using Remicade.
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04-10-2013, 08:08 PM   #3
kiny
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It's a good question and I don't have all the figures atm in front of me.

The chance is really small, but there is an increased chance versus controls. The risk should also not be underestimated, infliximab and humira were number 1-2 of most deadly drugs a few years ago (and maybe still are, haven't checked the numbers). They were still behind painkiller overdoses, but I don't think this is the same category.



1228 people died from 1998-2005, directly attributed to infliximab. The majority I believe were anaphylaxis deaths, it's likely the death rate was higher but it's hard to say sometimes if infections or cancers can be directly attributed to infliximab.


You can divide the risks into 3 categories, anaphylaxis, infections and cancers.


Anaphylaxis, which is rejection of the remicade because your B cells developed antibodies. Some people go in shock and so far a few thousands have died from it.

There's the risk of infections. How high that risk is is really hard to find, since it's not known how much infliximab is contributing to the risk of infections, it might depend on how many times you visit a hospital etc.

There's the risk of cancers, in particular lymphoma, that risk is small, but again bigger than controls, especially for young people and people who stay on it for longer periods. Infliximab causes expansion of certain T cells because it supresses others, if some of those T cells are malignant, you get a rapid expansion of them and that's why some people have died from lymphoma because of infliximab.

How high those risks are that's still up for debate, it's small, but it is there for some people.
04-11-2013, 01:59 AM   #4
Danico85
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thanks

i think ill give it a miss then.

Nicky
04-11-2013, 03:30 AM   #5
Beach bum
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Is that 1228 in the world? It is a bit hard to judge what that number means without knowing how many people took the drug in that period (and presumably did fine on it).
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04-11-2013, 03:47 AM   #6
kiny
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The world would be a very small place back then, infliximab was pretty new to the market, it came out not too long ago. Humira came out later.

They're just reports from Western clinics, they would include European reports too but the figures are normalised for the US I think. The figure shouldn't be used to make a percentage out of, since it's not normalised against the actual use.

If you actually want the numbers, the FDA has them, I look at them every year or so, but they use .doc and .txt files that are formatted really poorly, it takes a long time to make sense of them. That picture isn't actually straight from the FDA, it was a study that put it together and CNNreported it, however the numbers are from the FDA. They also use abbreviations for everything, DE would be death, LT would be life treatening, HO would be hospitalisation, DS is disability, OT is other, etc.

Another thing they do is they will sort adverse effects by liver issues, kidney issues etc. Infliximab is in the top 10 for liver issues, but that data was not known before, it was never attributed to infliximab because it's hard to tell what is causing liver damage sometimes. So someone with liver issues probably shouldn't be on infliximab.

Their system is called FAERS, FDA Adverse Event Reporting System


Last edited by kiny; 04-11-2013 at 04:16 AM.
04-11-2013, 04:15 AM   #7
Danico85
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Known my luck id end up one of the unlucky ones who gets lymphoma and die or something. I genuinly was considering asking for it but i think ill give it a miss and just go for the balloon dialation instead
04-11-2013, 04:17 AM   #8
kiny
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You have strictures I assume then. Balloon dilation is not without risks, but remicade wouldn't help strictures really, unless they are inflammatory strictures, which I assume they're not if they're suggesting balloon dilation.
04-11-2013, 04:30 AM   #9
Danico85
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well im still waiting on my biopsey results to come back. its either inflammed or scar tissue, or a bit of both. so if it is scar tissue, your right, inflixmaxb wont be much use. So we will see what the results say.. id be over the moon if it was just inflammation.
04-11-2013, 06:15 AM   #10
Beach bum
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I am not trying to convince you (or me for that matter) that remicade is totally safe - we know it is not.
But for me personally it turned my life from miserable to pretty much normal in a matter of months.
From a quick Google it would seem that I am just as likely to die from complications in surgery or Digestive disease as having remicade or catching cancer.

For me the gamble is worth it.
04-11-2013, 06:18 AM   #11
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i know i completely understand why you did it. if your living a miserable life then you have nothing too loose, all you can do is get better. but my life is pretty normal at the moment and if i end up with liver issues or lymphomia all because i want a better than normal life. if it got to the stage i was screwed unless i got it i would.

id rather inflixmaxb than a bag.. defo
04-11-2013, 10:30 AM   #12
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im on it and it turned my bowel health around. on the other hand every frigging wee lump or sniffle I get im crapping it that's it something serious.
also my liver function is steadily raising and now after reading this thread im CRAPPING IT MORE.
no seriously if your life is normal its not worth the stress.
ju
04-11-2013, 11:15 AM   #13
alex_chris
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Hey Danico,

How many flares have you had while on aza? I have been on it since 2003 (with a two year pause from 08-10) and his been a bumpy ride until I managed my Crohn's better, added more sport and vitamin therapy... or to be more specific aza actually worked great from 2003 to about early 2006, then I got flares every few months until late 2007 and lost weight, specifically because I stopped doing enough sport. Started sport and stress relieve again in 2007 and went into remission most of 08, but battled with iron deficiency from late 2007. Went off aza in late 2008 because I was in remission and my GI said it might interfere with my iron. For the next two years things were sort of ok with some flaring in between, iron however remained low so I was fatigued and did less in sense of sport until I really had quite a big active Crohn in the second half of 2010 and went back on aza... Thankfully this time with a higher dosage (150mg). Things got better again (again with sport) then another big bump due to iron deficiency end of 2011 but since early 2012 (again with a lot of sport) complete remission.

Basically what I want to say is that aza isn't a perfect drug that keeps you in remission all the time. And thinking back (i) I am glad I never went on biologics (but I would have if aza hadn't really worked)' and (i) I know quite well why my Crohn was active in the last 10 years despite aza.

Having said that, coming back to the beginning of this post, how much inflammation did you have with aza and did you go into remission with it before? If so, I'd first try to find the right dosage of aza and try various things to keep you in remission first and only if that doesn't work consider biologics. However, if you tried aza for years and it never got you to remission despite a good diet, stress relief, no vitamin deficiency etc., then - despite the side effects - consider biologics. At least that's my two cents.
04-11-2013, 11:36 AM   #14
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http://www.ccfa.org/assets/pdfs/risk...transcript.pdf

Read this. Good luck! Another thing, why not ask about Humira? A lot of the immediate reactions toward Remicade are down to the mouse protein in it, Humira uses human protein so the chances of having a reaction similar to that of Remi is minuscule.
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04-11-2013, 11:46 AM   #15
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That's a good interview, very comprehensive overview over the current situation and the risk benefits.
04-11-2013, 12:22 PM   #16
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i know i completely understand why you did it. if your living a miserable life then you have nothing too loose, all you can do is get better. but my life is pretty normal at the moment and if i end up with liver issues or lymphomia all because i want a better than normal life. if it got to the stage i was screwed unless i got it i would.

id rather inflixmaxb than a bag.. defo
Remicade can be used as maintenance to keep people in remission so you can avoid even small amounts of chronic inflammation which will only build up more scar tissue putting you at risk of a blockage and surgery. No medication out there is without risk.
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04-11-2013, 01:24 PM   #17
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I would rather take the small chance of Remicade causing something else than go through what I did before going on it.....I have managed to avoid surgeries so far, and it took care of my fistulas.....

If it wasn't for being on Remicade I would be a much sicker person!

Everyone needs to weigh their own pros/cons - such as family history, disease activity, general health, personal preference....
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04-15-2013, 10:09 AM   #18
Ya noy
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It's a good question and I don't have all the figures atm in front of me.

The chance is really small, but there is an increased chance versus controls. The risk should also not be underestimated, infliximab and humira were number 1-2 of most deadly drugs a few years ago (and maybe still are, haven't checked the numbers). They were still behind painkiller overdoses, but I don't think this is the same category.



1228 people died from 1998-2005, directly attributed to infliximab. The majority I believe were anaphylaxis deaths, it's likely the death rate was higher but it's hard to say sometimes if infections or cancers can be directly attributed to infliximab.


You can divide the risks into 3 categories, anaphylaxis, infections and cancers.


Anaphylaxis, which is rejection of the remicade because your B cells developed antibodies. Some people go in shock and so far a few thousands have died.
Anaphylaxis is nothing more than an allergic reaction, abet a rather serious allergic reaction which can be life threatening, but I've gotten anaphylaxis from bee stings.

Of the first 5 meds on that list, 3 are (highly addictive) opium based pain killers, Chlorzapine is a powerful antipsychotic, used to treat schizophrenia, and #5 is nothing more than your standard-over-the-counter Tylenol.

So there's more of a risk of dying from pain meds, even Tylenol, then there is from Remicade.
04-17-2013, 07:10 AM   #19
kiny
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So there's more of a risk of dying from pain meds, even Tylenol, then there is from Remicade.
There's more people dying from painkillers, that's right, but they're also people who overdose on them.
09-07-2013, 11:29 AM   #20
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I almost died from taking Remicade.

I spent almost 4 months in the hospital, my lungs are ruined, I need a cane to walk and I have to be on oxygen 24 hours a day the rest of my life. I got a pneumonia which they could not diagnose because there was no warning for toxic or allergic pneumonia caused by the drug so the doctors treating me kept looking for an infectious pneumonia.

The drug kills people for real. The biggest problem other than the deadly nature of remicade is the physicians are not warned by the drug company. One of the physician experts hired by Centocor in my litigation against them claims he did not even know Remicade is one of the top deadliest drugs in the country. And don't forget these are the people they linked to Remicade. Many presumably got cancer or pneumonia or whatever and just died without it being known that Remicade caused it so its more deadly than reported.

Sure it helped a lot of people. Killed a lot of people too and the drug company should report both honestly and openly so that you and every other patient is informed when he makes the decision to take it. You can't count on your physician because the drug companies do not warn them.

You have no idea of the billions of dollars they make off this drug and they would still probably make plenty IF they warned you properly and prompted physicians to prepare for these terrible side effects. In my case an early recognition would have most likely spared me from the miserable life I now face. But you think the drug company accepts responsibility and acts to try to minimize the deaths and injuries from side effects? No they don't.

If I knew then what I know now I would never have taken the drug. Certainly less people would take it when they are aware it is close to the deadliest drug on the planet if one doesn't count pain killers.
09-07-2013, 11:57 AM   #21
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I suggest you discuss your concerns with your DOCTOR who has the training and experience to answer questions like this.

As others have pointed out, you can die from a lot of things like a bus or an asteroid hitting the earth. Figuring out what to compare to what when you ask "will this drug kill me" is really the biggest problem. Untreated Crohn's can certainly shorten your life and even kill you. Do the numbers in the charts take that into account?

It's a complicated question and there's no one on the face of the planet who can answer it with a flat percentage.

And I feel it's important to point out that forums such as these draw folks who are the sickest, who have failed multiple treatments, are newly diagnosed or are frustrated with the diagnosis process. People for whom treatment is working well generally are busy leading their lives so you won't hear from many of them. FWIW
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09-07-2013, 12:37 PM   #22
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Taking Remicade is a decision for each individual to make with the assistance of their physicians.

My point is that you need to BE INFORMED and be prepared. Don't turn your life over to any physicians completely because its your life. You cannot rely 100% on your physicians or the drug company for your information. You need to be very well informed from websites like this one or others.

Drug companies have a financial interest in having you take Remicade. Its very expensive. Do they know its one of the deadliest drugs there is? Of course they do. Did they tell you? I doubt it. Did they tell your physician its that deadly? I doubt it. So your physician cannot advise you as well as he would like no matter how good he is because the drug companies do not advise him so well. Most physicians do not know that these side effects kill a lot of people and the numbers would probably be lower if the drug company did a better job of warning them.

You need to be aware of all the facts and the fact this drug kills a lot of people is very relevant to your decision and indeed important for you to consider. At the very least you can be prepared and have your physician be on the lookout for Remicade side effects so what happened to me does not happen to you. When you develop a cough or pneumonia don't let your physicians delay in how aggressively they respond to this or any other possible side effect with no treatment.

PLEASE be prepared for side effects so you can aggressively respond to them before its too late. With respect to any medical treatments always do some research yourself because there are many things your physicians may not know regardless of how good they are. When the drug companies hide information from your doctor then they have hidden it from you.

Best of luck to all regardless of your decisions.
09-07-2013, 08:38 PM   #23
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I'm new here but I've battling Crohn's disease for 11 years. I was on Remicade in the past and thought I would post my experience with it.

Remicade for me, in the beginning, was a wonder drug. I hadn't felt better in years when I was first started on it. I was getting infusions every 6 weeks and then monthly. For a year and a bit I felt normal. It completely stopped my flare up and everything associated with that dead in its tracks after the loading doses.

The unfortunate part was that it became less effective over time. I was told this was normal due to how Remicade is an artificial antibody and over time the body sees it as foreign and as such begins to have an immune system response to it.

Like other people here, it was a treatment that was tried since nothing else was really having an effect and I was needing increasingly higher, more frequent and longer treatments with Prednisone. Prednisone was not gentle to me at all. So I decided it was worth the risk. After doing hours and hours of research on Remicade, I saw that it could do a lot of horrible things to a person. I also saw it could do truly amazing things for a person. To me it was worth the risk.

With that said, everyone needs to evaluate their unique situation, consult with their doctors and decide if taking Remicade is worth the potential risks.

Hopefully sharing my experience with Remicade helps.
09-07-2013, 09:20 PM   #24
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I am currently on remicade and I can tell you that it has been a miracle. That medicine knows how to work its magic. I've tried all the pills/tablets, nothing worked. Of course, every medicine has its side effects, but you can't die from remicade...the only severe cases I've read is mixing remicade with Imuran, which can lead to cancer.

IMPORTANT: when taking remicade you might have an allergic reaction. If so they will notify you and give you benadryl before the infusion.

Good luck!
09-07-2013, 09:35 PM   #25
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diannecalix, Remicade has been a great med for my son as well. There have been fatal allergic reactions from Remicade. Also Remicade has an FDA blackbox warning that states there have been deaths associated with a fatal cancer, HSTCL. At first studies showed the risk was increased with Remicade/imuran use but the warning has now been expanded to biologics(Remicade, Humira, cimzia) used alone and for Imuran used alone and 6MP used alone. The risk is small but it is there and HSTCL is usually fatal.

Regardless of steroids used during infusion if you were to have anaphylactic shock it could be fatal. Most of the deaths listed in the chart above for Remicade/infliximab are probably due to anaphylactic shock.

It is a hard decision but we felt the benefits outweighed the risks as our son's disease was severe, Remicade has made all the difference and I only hope it keeps working for my son for a long long time.
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09-09-2013, 05:33 PM   #26
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FWIW, the chances of me dying on Remicade in the next 5-10 years are lower than the chances of me dying off Remicade in the next 5-10 years because it's the Remicade keeping me alive! But if you're asking whether taking Remicade will kill you, the answer is that a) statistics can't tell you about your individual chances of anything, and b) you have to weigh the quality of life on vs off Remicade. I'd rather trade a few years of my life away and have a high quality of life on Remicade than have no quality of life (=living hell) for longer.

Crohn's gives us tough choices. Best of luck in making the choice that's right for you.
09-10-2013, 01:50 AM   #27
Chica
You have to see how the benefits most commonly far outweigh the risks. It turned my health around like a miracle with no side effects at all. I'm a dancer (now part time) & I know a fitness trainer / body builder who's been on it no problem for years. I also know a guy who was involved in developing the drug & the testing is extremely strict & the Swiss company who developed it have the best reputation in the world. It's just proteins that go into the body only looking for the cells that are causing the inflamation, they then attach themselves to those problem cells & re-programme them, it's a very clean, silver bullet approach rather than wiping your body out with cheaper toxic drugs. Biological meds are the way forward, even a paracetamol & antibiotics have a negative effect on your whole body, this is more direct.

I see lots of people coming & going in the hospital on it & I speak to the staff & they hardly ever get a bad reaction & if they do it's only allergic so they are on standby with the right medication in that event. Personally I'd say go for it. : )
09-10-2013, 07:31 AM   #28
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It's just proteins that go into the body only looking for the cells that are causing the inflamation, they then attach themselves to those problem cells & re-programme them, it's a very clean, silver bullet approach rather than wiping your body out with cheaper toxic drugs.
Correction: it's a designer antibody that attaches to a protein called tumour necrosis factor alpha (TNF-α). TNF-α acts a signal in the body that rallies other inflammatory factors during the process of inflammatory reactions. When Remicade attaches to TNF-α, it "flags" the protein as garbage/invasive. This provokes the cells in the body that clean up garbage to eat the TNF-α/Remicade combo and destroy it.

When TNF-α gets destroyed, the inflammatory response that it would have provoked gets stopped in its tracks. It's like taking out a domino in a domino cascade: the dominoes after it don't fall. This is a much more targeted way of stopping inflammation than using steroids or other drugs that act on the whole immune system (and other systems), not just on the TNF-α. But the steps in the inflammatory process that happen before TNF-α gets released are not affected -- it's a therapy, not a cure, for the underlying disease. Current research into Crohn's and other immune diseases is looking at what happens "upstream" of TNF-α, among other things.
12-23-2013, 12:12 AM   #29
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Anaphylaxis is nothing more than an allergic reaction, abet a rather serious allergic reaction which can be life threatening, but I've gotten anaphylaxis from bee stings.

Of the first 5 meds on that list, 3 are (highly addictive) opium based pain killers, Chlorzapine is a powerful antipsychotic, used to treat schizophrenia, and #5 is nothing more than your standard-over-the-counter Tylenol.

So there's more of a risk of dying from pain meds, even Tylenol, then there is from Remicade.
When referring to risk one usually means the percent of people affected. Certainly more people died from Acetominophen but the percent of people that died from it is much smaller than the percent affected by Remicade. So Remicade is more dangerous i.e. more likely to kill. So there is more risk from Remicade not Tylenol.

I could be wrong here and please correct me if I am.
12-24-2013, 10:39 PM   #30
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1228 people died from 1998-2005, directly attributed to infliximab. The majority I believe were anaphylaxis deaths, it's likely the death rate was higher but it's hard to say sometimes if infections or cancers can be directly attributed to infliximab.

That table is misleading for this thread. The levels mean nothing at all. Only the rates would be meaningful to answer how dangerous Remicade is vs. other drugs.

Not controlling your Crohn's if no other drugs are working is dangerous as well.
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