Remicade Warning

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Joined
Jan 9, 2012
Messages
10
My brother has had Crohns disease for 32 years and the doctors put him on Remicade. He had the infusions for 2 years and experienced alot of achiness and other painful symptoms. Unfortunately I, his sister,and caretaker, did not at the time research this drug very well. I will forever regret this because if I did I would never have let him take this. This drug has been blackboxed for a reason and it really makes me angry to know that doctors still prescribe this death trap to people. The end result for my brother was he got lymphoma cancer from this and also pancreatic cancer, bladder cancer, colorectal cancer and the list goes on. All from Remicade! My brother passed away September 15,2011 and was buried on his 39th birthday. This drug needs to be taken off the market. I have done alot of research on this drug and have read soo many similar stories. I cry everyday missing my brother and if his story can help just one person than it was worth the warning.
 
I'm so sorry for your loss. There is a risk of lymphoma, and when you get it, the statistics don't matter. But it is a very low risk and has saved many lives.
 
What do you mean by "Blackboxed"! This post is alarming seeings how I am currently on remicade, I have researched and knew (like with most drugs) there is a certain risk but I didn't realize it could take a toll like that!! This is really scary! I would also like to say I'm sorry for your loss and sorry for your brothers suffering.... I hope you find some peace.
 
Thank you for your sympathy. I am sorry if I scared you Nell because this is and was not my intention. If this drug is helping you than I am happy for you but I will say please just keep up on your checkups. You know your body better than anyone. And here is what black boxing a drug means:

n the United States, a black box warning (also sometimes called a black label warning or boxed warning is a type of warning that appears on the package insert for prescription drugs that may cause serious adverse effects. It is so named for the black border that usually surrounds the text of the warning.

A black box warning means that medical studies indicate that the drug carries a significant risk of serious or even life-threatening adverse effects. The U.S. Food and Drug Administration (FDA) can require a pharmaceutical company to place a black box warning on the labeling of a prescription drug, or in literature describing it. It is the strongest warning that the FDA requires.

Please I mean in no way to upset anyone my intentions are sincere. I wish I had researched this before my brother took it more thoroughly. Dont get me wrong he felt better when he started it although he had alot of achiness and fatigue and other bothersome symptoms. The symptoms of Crohns and some cancers do mimic each other. The hospitals did not catch it until he was stage 4. He was urinating blood,his blood count was off, He was getting blood everyday and platelets and I could go on. They told us of his diagnoses 10 days before he passed and basically said to kiss him goodbye there was nothing that anyone could do at this point. Does this anger me yes it does. But I would like to direct, not anger, but knowledge to as many as I can to prevent this from happening to Anyone else!

Thanks and God Bless!
 
Eagle I am really sorry to hear your story also..you must miss your brother terribly.

Nell Bell...if you google Remicade (or read the insert...we got an info packet before starting Remi from our doc) there is what is called a black box warning. People with autoimmune disorders have a higher risk of lymphoma already...Remi has been shown to increase your risk further.

I believe that every treatment (or lack thereof) presents at least one risk or quality of life issue for each one of us. Sadly, we must not choose a "solution" (read:cure) for the disease, but what we decide to be the best available option at the time.
 
While I'm terribly sorry for your loss and I would hate for anyone else to experience your pain, I don't believe it's fair to label it as a "death trap" or advise others to stop taking it. Like any medication, Remicade comes with a set of risks and as Stephanie said, it is helping countless numbers of people. I take a drug called methotrexate and there have been thousands of deaths directly caused by it since it first began being used for auto-immune diseases but I continue taking it knowing that I run this very, very small risk because it literally gives me my life back.
 
Its just so hard to choose what to do when you are sick... We all want what's best for our health or a loved ones health and sometimes we don't care at what cost. I am out of options at this point and had to try the remicade because everything has failed and I'm allergic to steroids (<--- rare I have been told). Like I said I have educated myself, read labels, asked questions, researched, I just never read anything so severe as this. Again, I'm sorry for what your brother, you and your family has gone through.
 
Thank You Izzi's Mom,
I am sorry that your beautiful daughter at the age of 5 has this disease. My brother was diagnosed at the age of 7.
And Yes I agree with what you said "we must not choose a "solution" (read:cure) for the disease, but what we decide to be the best available option at the time". However In finding a way to a better quality of life for him I would not choose something that may lead to death. But like you said many of these medications have their risks and sometimes we just take our chances.

Also the risk of cancer in Crohn's patients increases every 7 to 8 years and my brother had it for 32 so you would think they would have looked for it. The way they found it( after 2000 ct scans which did not find it) was from doing a biopsy of his bladder and the thing they called an abscess that they drained twice and couldn't suddenly drain anymore was in reality a Cancer that grew into his bladder wall.

Thanks again for all your opinions it really helps to hear what everyone has to say.

My prayers are with you all!
 
While I'm terribly sorry for your loss and I would hate for anyone else to experience your pain, I don't believe it's fair to label it as a "death trap" or advise others to stop taking it. Like any medication, Remicade comes with a set of risks and as Stephanie said, it is helping countless numbers of people. I take a drug called methotrexate and there have been thousands of deaths directly caused by it since it first began being used for auto-immune diseases but I continue taking it knowing that I run this very, very small risk because it literally gives me my life back.

Thank You Seaofdreams and I understand and appreciate what you are saying. I am soo happy that your drug is helping you. I only wish the best for you but in response to the death trap comment I must say this is how I feel. I have seen firsthand what it has done. People like yourself feel that the benefits for now outweigh the risks and you have the right to choose. I am just one person with one opinion and again I do not mean to anger or upset anyone with what I said but it does not and will never change how I feel about this drug. If anyone had a bad experience with Methotrexate(which many have) leading to death of a loved one, then they inturn would agree to not take it. So Everyone has choices and as long as they are aware of the warnings and then still decide to take the drug or drugs which have been cautioned then that is their choice. Life is all about making choices and really this is not about right or wrong decisions it is about awareness to those who are not aware and this is the message I am trying to get out there and from there they can do their own research and make their own decisions.
 
Its just so hard to choose what to do when you are sick... We all want what's best for our health or a loved ones health and sometimes we don't care at what cost. I am out of options at this point and had to try the remicade because everything has failed and I'm allergic to steroids (<--- rare I have been told). Like I said I have educated myself, read labels, asked questions, researched, I just never read anything so severe as this. Again, I'm sorry for what your brother, you and your family has gone through.

Nell Bell I understand and watching my brother suffering was the hardest thing to watch let alone be the going through it. I so felt with him to the point of getting myself sick just sympathizing with him. Nell if this is helping you then so be it. I am just happy you are aware of the dangers of it now. Just keep up on your checkups and be aware of your body. I have to say Those with such a disease or should I say any disease are very aware of their bodies. There is a natural drug I found for him years ago that really helped him but I can not think of the name of it right now but when I do if you want I will let you know. It really helped him feel better. Thanks again for your sympathy and yes it was very severe but you are your best doctor and anyone will tell you to always research anything they prescribe before making any decisions to put it into your body and always go with your gut feelings.
 
Anything that suppresses the immune system carries great risks. My nephew had to take Tacrolimus after his liver transplant. Unfortunately, because of the lowered immune system, he got EBV which became Lymphoma. His parents knew of the risk, but what are they going to do? He HAS to take an anti-rejection drug or he'll DIE. So sometimes the benefit far outweighs the risk. I'm sorry your brother went through this, I truly am. I was there with my nephew everyday while he fought and won his battle with Lymphoma. I know what a struggle it is and I have utter sympathy for you and your family.

I do not think it's fair to call it a "death trap" and scare those that have no other options to help lead a semi-normal life. Without Remicade, I'd probably be dead as would a lot of other people who are on the medication. Every drug, food, drink, activity, vitamin, relationship, etc carries some sort of risk. I too hope people educate themselves on the risks. But we can't live our lives being afraid of or avoiding everything. That wouldn't be living life.

I didn't want my nephew to go through everything he has been through in his very short 11 years. I wish your brother never went through it either. I'm sorry for the pain that cancer and illness causes everyone. But we all need to live while we can because we are going to be dead a long time. If living life involves me getting an infusion of Remicade every 8 weeks, than I will continue to do it...
 
Anything that suppresses the immune system carries great risks. My nephew had to take Tacrolimus after his liver transplant. Unfortunately, because of the lowered immune system, he got EBV which became Lymphoma. His parents knew of the risk, but what are they going to do? He HAS to take an anti-rejection drug or he'll DIE. So sometimes the benefit far outweighs the risk. I'm sorry your brother went through this, I truly am. I was there with my nephew everyday while he fought and won his battle with Lymphoma. I know what a struggle it is and I have utter sympathy for you and your family.

I do not think it's fair to call it a "death trap" and scare those that have no other options to help lead a semi-normal life. Without Remicade, I'd probably be dead as would a lot of other people who are on the medication. Every drug, food, drink, activity, vitamin, relationship, etc carries some sort of risk. I too hope people educate themselves on the risks. But we can't live our lives being afraid of or avoiding everything. That wouldn't be living life.

I didn't want my nephew to go through everything he has been through in his very short 11 years. I wish your brother never went through it either. I'm sorry for the pain that cancer and illness causes everyone. But we all need to live while we can because we are going to be dead a long time. If living life involves me getting an infusion of Remicade every 8 weeks, than I will continue to do it...

Thanks P,

I am so sorry about your nephew and thank you for your sympathy. I know this word is going to upset people but this is how i feel. My brother took the infusion thinking it was some miracle drug and like a friend that stabs you in the back this is what Remicade did. I understand sometimes you have to take a drug like in the situation of your dear nephew but this is different. My brother was not going to die if he did not take these infusions.There where other options so it wasnt like "take Remicade or die" it was take Remicade then die from the result of taking it. You know the doctors should have known since he had crohns for 32 years and alot of imflamation that he wasn't a candidate for this like some others but they were negligent and gave it to him anyways. If I had told you the whole story there is much negligence in my brothers care even though I lived at the hospital with him and watched everything they did and gave etc.but too long of a story. And you are right everything has risks but if my brother was told his chances of cancer from this drug were very high then I know he would have said noway. Unfortunately I didnt do my homework like I should have either and I will forever regret that. The last year of his life I knew and had to ok every drug given, every and all lab results, what I wanted done next, any tests they wanted to perform, etc., but the choice for him taking Remicade was a choice he made on his own and this is his right but I know my brother he always looked to me for all decisions and I failed when it came to the Remicade decision. And like I said I will have to deal with it forever.

So I am sorry to scare anyone I have scared ,it is only the result of the fear I feel. I realize some of you have had good results with it but like I said just please keep on your checkups. Yes I am one person with one story and I am just doing what I feel is right. If this just brings awareness to all on Remicade and they will now not miss appointments or get that test they feel they need then I have done what I have set out to do.

Much Love to you ALL and God Bless!:heart:
 
I think in that situation, I'd be more upset with the doctors than with the drug itself.

Unfortunately, A LOT of the drugs we, as Crohnie's take carry that same warning, not just Remicade. Off the top of my head to name a few; Remicade, Cimzia, Humira, Methotrexate, Enbrel, Imuran, Mercaptopurine, Prednisone, and Tacrolimus. I think it's wrong of you to come along and try to scare people into not taking a drug that could save their life, or give them their life back. People need to be educated, yes. But scaring them isn't the way to do it.

And yes, with all that inflammation, he must certainly could have died without the Remicade. Untreated inflammation=colon cancer or ruptured intestines and sepsis.
 
I'm sorry for your lost. really I am. I've suffered all my life because of Crohn's, I know what it is.

I'm also sorry I have this plague that if untreated could give me colon cancer. There is a possibility. nothing is safe.

I forget where I read this but the risk for cancer from remicade is like 1% more from any normal person. So and I am just throwing numbers here if a normal person has a risk factor of 5 somebody taking remicade is 6. It's not a big difference. I'm sure it's on this site somewhere...

A lot of things can go wrong. I for one prefer to risk cancer down the road than to living with this plague and in pain for ever. If I get the Big C well it's game over. Many people get cancer I'll just be one more and that's it.

Right now I am free and alive. So Today we celebrate for tomorrow we may all die.

Stay strong and don't be bitter. We all take chances. Some are luckier than others.
 
Eagle67--

I am so sorry to hear about your brother. I know what it is like to lose a loved one as I lost my uncle to brain cancer in 2007. His type of cancer was very aggressive and after he tried every treatment he was left with one chemotherapy option which was so strong it alone could have killed him. He chose not to go that right and a few months later, died. Unlike some other people, I really appreciate your warnings on Remicade. I am trying to get my doctor to treat my symptoms and am still researching the different drugs available. Although, your warnings on Remicade are scary, I would rather know and research the drug more than to not know and face the consequences like your brother unfortunately did. I appreciate you sharing your experience and knowledge on the drug with others so that others can make an informed decision on treatment if they choose too.
 
Hi Eagle67 and :welcome:

I am so sorry to hear go your loss, whatever a difficult and heartbreaking time for your family. :hug:

Unfortunately most of the traditional drugs used to treat IBD carry the risk of developing Lymphona as a side effect and it is a difficult choice for those faced with decision to take these drugs. :(

Moogie, perhaps you were looking for an article such as this:

http://www.ccfa.org/webcasts/Risk%20and%20BenefitsTranscript.pdf

I have two children on Imuran and I hate that they take it everyday but for them their disease severe and of the fistulising variety so untreated death is also a very real. It scares me reading posts such as yours Eagle but it is reality and something that I have to face.

Perhaps now is an appropriate time to stress the fact that sufferers do need to be vigilant in the monitoring of their disease and this seems to be what you are also stressing in your posts. If you are taking medication, as time goes on, it remains imperative that you have blood tests at least every 3 months. I personally think 6 months is too far between tests. If you are in remission and drug free it is still imperative to have check ups with your GI. This disease has the ability to be very insidious, inflammation can be festering away without you knowing about it and all the while causing damage and changes.

I hope you are able to find peace soon and closure soon Eagle and the dark days become fewer and farther between. You have my most sincere condolences.

Dusty. xxx
 
I am really sorry for your loss. I appreciate that you want to help by warning everyone. I have already had colon cancer from unchecked inflammation, so this is always a sensitive subject that taps into my fears.

Peaches mentioned in another thread that the risk of lymphoma goes from .01% or 1 in 10,000 for the average population to .04% or 3-4 in 10,000 for Remicade patients. Most of those who get cancer are those who also take 6MP and are men under 35 years old.

Of course, if it's us or one of our loved ones that get it, statistics mean nothing. I hope you find some peace and comfort in the memories you have of your brother and in helping others. I am so glad you joined our forum.
 
I am really sorry for your loss. I appreciate that you want to help by warning everyone. I have already had colon cancer from unchecked inflammation, so this is always a sensitive subject that taps into my fears.

Peaches mentioned in another thread that the risk of lymphoma goes from .01% or 1 in 10,000 for the average population to .04% or 3-4 in 10,000 for Remicade patients. Most of those who get cancer are those who also take 6MP and are men under 35 years old.

Of course, if it's us or one of our loved ones that get it, statistics mean nothing. I hope you find some peace and comfort in the memories you have of your brother and in helping others. I am so glad you joined our forum.

Thank You soo much for your kind words. My intentions were not to scare anyone who is taking Remicade but just to educate the ones who didnt know or were not aware of the dangers, as in our case. Which is something I will have to live with the rest of my life. I only wish you the best and we are our best Doctors. We know our bodies better than anyone and have to make sure we do our part in the care of it. May God Bless you and keep you well.:)
 
found what i was looking for! thank you for sharing your story! i had 6 doses of remicade and all of the sudden i got kidney cancer! last month my doctors were able to remove all of the cancer but i have been in the air the last week or two about ressumeing treatment.Although the risk may be low,for me its not worth the risk.Im so sorry to hear about your loss but in this post you may have saved another.
 
Oliver so sorry to hear about the Kidney Cancer but great to hear you caught it in time. If my post has saved just one life, Yours, then it was worth posting it. I will pray for you for continued health. You have made a wise decision my friend. God Bless!
 
This scares me so much! My son is 12 and has been started on Remicade and they will be adding Imuran. We really hate for them to use that combination but we were really given no other choice. I guess we could refuse to add the Imuran but that could cause the Remicade to stop working.

I read that the cancer risk was about 1.5 in 1,000 for those using just one and when they are used in combo it increases, but I couldn't find the statistics for that.. does anyone have them?

Does anyone know if it would be best to use remicade alone or have any other suggestions? I'm literally making myself sick worrying about this on a daily basis , crying and wondering if I'm doing the best thing for my son or if I will be contributing to something far worse.
 
I wouldnt get too hung up with all the statistics, it could be 1 in a billion but if you are that one it doesnt mean a thing.

On the other hand, if you look at everything that can kill us its surprising that we manage to live at all. (how many people smoke, drink, eat unhealthily, dont exercise etc).

Personally I would like to get better now and worry about what might happen later. Theres no point in feeling bad throughout your best years of your life only to find that you get cancer, run over etc later on in life. Remember, allowing this disease to get a hold may cause problems in later life as well (malnutrition, bowel cancer).

Im on both remicade and imuran and its been a life saver, I feel like a new person. I still have to watch my diet, and I do get blood tests every 2 months to ensure they do pick up any problems early, but its help me so much im glad I went on it.
 
Hey mreyn its hard not to worry i know.I honestly think my cancer was from the remicade BUT if i could do it all over again....i would...i wont now that i have had it but the chances are slim.Look at all the positive post about it and i have to completely agree with rygon anything these days have side effects.Stay positive about the treatment i wish your son the best.
 
Pediatric patients with IBD as well as adults with childhood-onset IBD are at increased risk for other comorbidities and complications as well. The risk of cancer appears to be particularly high in patients diagnosed with Crohn's disease before 25 years of age and in those with a history of pancolitis.3 Crohn's colitis patients have a risk of adenocarcinoma of the colon that occurs at an incidence 4–20 times greater than that of the general population. Those with disease of the small intestine carry a 50–100 times increased likelihood of developing carcinoma of the small intestine.28 The risk of colorectal cancer in ulcerative colitis is directly related to disease duration, such that there is an incidence of 5% at 20 years and 40% at 35 years among children who develop ulcerative colitis before 15 years of age.47 The safety and efficacy of routine childhood immunizations for vaccine-preventable diseases are a clinical issue in pediatric patients, though recommendations for most children with IBD do not differ from schedules recommended for the general population.48 However, a decrease in immune response to influenza vaccination has been documented among children receiving infliximab and immunomodulatory therapy.49 Finally, the transition of IBD patients from pediatric to adult care is a unique situation that requires time and careful planning.7 Successful transition requires a well-designed transition plan, creation of a current and accessible medical summary, access to continuous health-care insurance coverage, and identification of a healthcare professional who understands the needs of adolescents as they reach adulthood.7,50


From:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2886370/


Mreyn
So regardless of meds there is a greater risk of cancer in under treated Ibd
Never easy
 
Eagle- I am so sorry for your loss.

You listed the date of your of your brothers death as 2011. It is now over one year later
and you are writing this post. I am not sure what you could have meant to do but, scare
people.

The people on this forum think long and hard about the decisions they make. Alot of times this is a last resort. Dying from Crhons can be pretty ugly too.

Lauren
 
Clearly meant to scare. It scared me, and I read as much as I could a week ago after reading Eagle's first post. Face it, powerful drugs carry risks. I hate being on Remicade, I'd rather be drug free in a heartbeat. But at the same time I'd rather live normally for 10 years and die of a Remicade side effect than live for 40 more years dealing with Crohn's, dehabilitaing arthritis, and the depression that would wind up accompanying it. You weight your options. Quality of life carries utmost importance to a lot of us.
 
This was very scary for me to read because I am also on Remicade at the age of 20. This definitely makes me second guess my decision now. But I do appreciate this post! Its hard to admit but these are the kinds of things we are all looking for when we join this forum...what can go wrong?? What should we expect from doing this??....at least that is what is going on in my head!

I questioned the risks with my doctor once but she said that you are more likely to end up with cancer by not treating it than by treating it with a questionable drug. And since I have gone 10 years without treating it because we didnt know it was crohns then that makes me even more likely to develop some sort of cancer. This is all just so comforting isnt it!

I will definitely be discussing this drug with my pharmacist and doctor very soon!
Thanks for you post!
 
I am glad you posted the information. it is important for you to share your story and us to be reminded what kind of chemicals we are putting in our or in my case my daughters body. Our goal is to get her in remission and then eventually eliminate the chemicals and try to control it with natural and healthy methods.

I am so sorry you lost your brother. I think most of us by the time we get on this site have had to consider death for ourselves or our children with this disease. It is not something we want to think about, but it is a possibility.

I know that they are working hard to come up with cures, or better treatments. So many are also staying in remission after removing certain foods from their diets and opting for more natural methods. However, Remicade is usually only used when nothing else works. Our options were running out and we could not allow the Crohns to keep attacking our daughters body with such severe flare.

I dont think we would have chose another method, even knowing the risks.

thank-you for sharing.
 

Latest posts

Back
Top