Remicade - what's the worst that could happen?

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hannah-rose

hannah-rose

Joined
Apr 22, 2011
Messages
553
Will it give you cancer?

Will it kill you?



I know about all the little side effects - painful joints, rashes, flu like symptoms - but what's the WORST CASE scenario with this drug? And do you know anybody who's experienced these side effects?
 
HI hannah, i don't know much about the drug remicade, i do know it has side effects. my suggestion is to some research on the web and consult with your doctor before you decide on taking remicade.
 
Everyone is different, some do amazing and others don't. I suffered severe pain in the nodes of my upper extremities up to my jaw, my husband was worried it would hit my heart. The pain was so bad that 2 Percocets, did squat. I was so far the only case of that, so it is rare. You should read more on the remicade club. I would try it, but knowing what I know I would try Humira first. Why use a fire hose to put out a candle? Good luck,
 
I'll definitely be delving into my Doctor's medical brain before saying yes to it, it's just it might be my last chance unless I want to walk around with a crater in my butt forever.

On MedicineNet http://www.medicinenet.com/infliximab/article.htm side effects include

'Ipper respiratory tract infections, urinary tract infections, cough, rash, back pain, nausea, vomiting, abdominal pain, headache, weakness and fever,' none of which sound unmanageable, and compared to steroid side effects these sound like a blast.

Even 'low or high blood pressure, chest pain, difficulty breathing, rash, itching, fever and chills' don't sound terrible assuming they're all short lived and wont kill you.

'Serious infections' would obviously be bad, but the website says it's more a risk for people with small infections already.

The only terrible thing I've read is the small chance of 'lymphoma,' but does anyone actually know of anyone who's had Remicade induced cancer?

Basically I keep reading about these 'terrible side effects' and you described it as 'using a fire hose to put out a candle' but I can't actually find anywhere where somebody's actually suffered any terrible, non-reversable side effects.

I just want to know what I should be concered about if I'm offered Remicade, and what I should base my decision on.

Thanks guys :)
 
Remicade messed up Sarah but good. She had a serum reaction and still has unexplained joint pain (though to be honest I can't prove that the lingering effects are truly Remicade related.)

She was hospitalized for almost a week with the reaction and it was quite painful throughout her entire body. BUT, her reaction was rare.
 
I just read 'Sarah's Story' on the website in your signature :( such a horrible devastating story, I can't imagine how a child goes through something like that. I really hope that your family manages to find some relief soon.

It's so difficult isn't it, when you hear stories like yours and then you speak to some individuals who have no side effects whatsoever. It's a scary risk to take.
 
I have had two doses of Remicade and have not had any side effects, including during infusion.

My fistula healed within a week and all Crohn's symptoms were gone within a month.
 
Hi Hannah: Your pharamacist is probably your best bet here. S/he ought to be more aware of the latest literature on side effects compared to your GI. You could also consult the latest edition of a drug guide (some can be downloaded as apps; a university library might have one or two, as well).

Go very recent when looking at the guides, because things really do change from one edition to the next! For example, older guides (2008 or 2009, I think) recommend never taking melatonin while on Imuran, but the latest say it's okay. I know you're asking about Remi and not Imuran, but this was the only example I could think of off the top of my head. :)
 
scl - wahay, that's what I like to hear :D

Entchen - that's a good idea, I never thought of that, my recent encounter with doctors who know nothing about drugs suggests I should approach my very knowledgable local pharmacist, I'll ask him if he can help.
 
From what my doctor told me (and further research on my part) lymphoma has been shown when taking Remicade with other medications. Sorry, but I cannot remember the names of the other meds.
It didn't concern me since I have never taken any other drugs for my Crohn's.

I don't premedicate since I don't tolerate Benadryl and I did not have ANY side effects during or after infusion.
 
Your posts just keep getting better and better lol :) I like to hear the success stories! Now if you could just buy me a plane ticket to Hawaii so I can come join you and have a holiday that would be even better :D
 
Remicade can cause lymphoma but its usually more frequent with the combination of that and 6-mercaptopurine. Im on remicade now i get it every 8 weeks im due for another round next month. I currently have serious diahhrea and nausea and vomitting i get a colonoscopy next week to check, its hard to say if it is or will work and if my symptoms are medicine or disease related, i know a woman who is in her mid 40's with congestove heart failure and the docs think it may haclve been related to remicade. However nothing at all not even surgery works for me, so its either do nothing and slowly torture myself to death with this disease, or try this and hope for the best..i honestly think the serious side affects are few and far between, and im sure there are pleeenty of other things to worry about; look at it this way, if a drug causes cancer in 1 patient out of 1 million, they are still obligated by law and fear of lawsuit to make it known hey this "product" may cause cancer. Hope this helps a little and good luck!
 
Hannah
My experience with Remicade was definately not a good one. I don't usually say this to anyone considering Remicade or any other medicine that might possibly help them with this very stubborn and debilitating disease. I have talk to people that it has worked for and to people that it didn't. Crohn's seems to be a very complicated disease and one that needs to be structured differently for each specific case.
I only had two infusions. After the first, I began to have joint pain but I also have RA so not to much to be alarmed about except that my RA had been in remission for years. I had no other immediate reactions. My fistulas and Crohn's symptoms improved within a week. I felt pretty good and happy. Two weeks later, my second infusion. I then noticed the lymph nodes in my groin area were swollen. By the time I was to have my 3rd infusion, I was having many symptoms that something was not right. Headaches, I feeling of being out of it, etc. Before I had the 3rd infusion, my doctor terminated the treatment. That was in December - February of 2008-2009. I now have been diagnosed with Sjougrens Syndrome (another auto-immune disease), my RA has stayed in full bloom and medically induced Lupus. I just had a Mohs surgery with skin graph on my hand for a Squamous Cell Cancer. My bloodwork immediately confirmed that I had developed auto antibodies due to Remicade. Of course so far I consider myself lucky because I have not developed Lymphoma as alot of others have.
This is just my individual horror story but it doesn't mean this well happen to you. With Crohn's, unfortunatelly, we have to choose our own poisons in order to have a life. Remicade made be the best decision you could make in your case as it as been for many others.
I just felt it is necessary to hear all the possibilities, both good and bad, for you to make your best educated decision.
 
Oof, now that I did not want to read :( although I appreciate you for sharing.

To be honest, I don't really have another choice for my perianal disease. My body has never reacted badly to any drugs in the past, even those that claim to have side effects and those that other people have suffered on. I'm hoping my body holds out and tolerates it and shows some improvement if i have to have Remi/Inflix.

I havent read about those diseases you mentioned being side effects from Crohn's (looking on medicines websites.) I'm suprised that you developed these when the illnesses arent listed as side effects of Remicade.
 
Hannah-Rose, i too have been considering Remicade and only recently made the decision to go forward with it. I have a colonscopy scheduled on the 16th of this month and will start it after that. I am scared to start it but i'm having a nasty flare up triggering all kinds of symptoms, including arthritis in all my joints. maybe we can keep tabs on eachother through this process. i am going to check out the club too. good luck with your decision. If it helps, and if he's right, my GI said with Crohns i am at risk for other cancers and other severe symptoms. I can only hope he was being a doctor in that moment and not being a pharmaceutical salesman. It is really weighing what is going on with your body now. Almost daily i have some symptom that makes me want to go to the emergency room. my flare up has only been active for a month or so. Luckily i am able to calm myself down. I also have a high threshhold for pain. good luck and keep us posted :)
 
sillymom said:
Hannah-Rose, i too have been considering Remicade and only recently made the decision to go forward with it. I have a colonscopy scheduled on the 16th of this month and will start it after that. I am scared to start it but i'm having a nasty flare up triggering all kinds of symptoms, including arthritis in all my joints. maybe we can keep tabs on eachother through this process. i am going to check out the club too. good luck with your decision. If it helps, and if he's right, my GI said with Crohns i am at risk for other cancers and other severe symptoms. I can only hope he was being a doctor in that moment and not being a pharmaceutical salesman. It is really weighing what is going on with your body now. Almost daily i have some symptom that makes me want to go to the emergency room. my flare up has only been active for a month or so. Luckily i am able to calm myself down. I also have a high threshhold for pain. good luck and keep us posted :)
Click to expand...

Hi thanks for posting :) Seems like we're in a similar situation. Is the colonoscopy to check for Crohn's, and if you do have Crohn's will you then go ahead with Remi? The majority of people I speak to about the drug say they have few or on side effects and the Remi has really positive effects on their health, but the few exceptions are enough to scare me. It's true Crohn's increases the risk of bowel cancer, I don't know if my Crohn's increases my risk of bum cancer, I would expect so! If you're so bad daily it makes you want to go to the ER, then you deserve a chance to feel well again, and I really hope Remicade works for you xx
 
http://www.ccfa.org/webcasts/Risk and BenefitsTranscript.pdf

Read this, in a nutshell, 40 out 10,000 people that took Biologics died from serious infection, BUT they either had other problems besides the IBD and/or where old or on chronic narcotics.

As for the Lymphoma, it increases your chances from 0.02% to 0.04% or in combo with a immunmodulator 0.06%

So in another words, 4 out 10,000 on just Bios and 6 out 10,000 people on combo therapy unfortunately contracted cancer.

Also, another article I read about biologics was pertaining to the not yet known benefits for people with auto immune ailments seeing as we usually have out of control B and T cell activity which causes inflammation, and instead suppression you immune system so to speak it puts it in check.

I'll try to find that article for you.

EDIT: BOOM! I found it

http://medicineworld.org/cancer/lead/1-2008/drugs-used-to-treat-rheumatoid-arthritis.html

Taking from the article -

As per a research findings reported in the cutting-edge section of the Jan. 15 issue of the Journal of Immunology, the team observed that anti-TNF compounds help eliminate abnormal B cell activity in patients, raising the possibility that the drugs improve the health of patients in a way no one has realized before.
 
As others have said, the cancer risk is increased when taking Remicade in conjunction with 6MP/Aza.

However, the upside to combination therapy is that it tends to prevent people from developing the antibodies that could cause an adverse reaction, or render the Remicade ineffective. It's something to discuss with the doc. You don't want to take more meds than you need, but you also don't want to be limited to just a couple of infusions before you've exhausted it - your butt crater might re-open and Remi will no longer be capable of closing it. This is just hypothetical of course - the duration of the drug's efficacy, with or without an additional immunosuppressant, varies from person to person :).
 
Ian said:
your butt crater might re-open and Remi will no longer be capable of closing it.
Click to expand...

Lol, nice, thanks Ian ;)

Ive got my follow up with my Dr on Tuesday and I keep reading terrifying stories about people who've taken Infliximab and now I'm freaking out. I've got to talk to him too about the likelyhood of feveloping resistance after only three doses.
 
Yeah good idea :). Hopefully it won't happen if he decides to go solely with Infliximab, but it's something to discuss.

Try not to be too scared, they'll push a steroid and an antihystamine before the infusion, and you get your OBS monitored at numerous intervals to check you're not getting too high a temperature, heart rate, blood pressure etc. If anything goes wrong, they'll catch it straight away and sort you out - you'll be at the right place at least! x
 
Hi Hannah-

I basically had the same fears. My GI clinic has an IBD clinic so that is where I go for infusions. I feel "safe" at the infusion since the nurse is right there and checking vitals(temp, BP, pulse ox) every 30 minutes. I haven't gotten any premeds with any of my infusion - 3 total now. They start the pump at 10ml/h and it slowly ramps to 250 ml/h. So it starts really slow......

I have been having more issues 2-4 days afterwards. This time around I have nausea and the back pain has returned. I think this is achy muscles. It woke me up last night. So I have been calling my GI and reporting these things this time around. I tend to never call and just deal with it but the infusion center nurse said I should be calling with these side effects. Of course, the doctor got back to me about the nausea and said that we would discuss it next week at my follow-up appt. And I still haven't heard anything back about the muscle stuff so it must be nothing big. Nothing that I can't deal with I just want to ensure it isn't an indication of something else going on like serum sickness.

So overall, it has been a little rocky a couple days after the infusion for me but then I feel ok.

Good luck. Also, remember for every bad experience you read on the internet there are a lot of good ones that people are not posting. I always try to remind myself of this fact when I am getting freaked out.
 
hannah-rose, I was on Remicaid for approximately a little over a year. Unfortunately before then I could tell that it was rapidly losing effectiveness. It made me feel like hell for a couple of days after each dose, but the worst thing it ever did to me was put me in acute renal failure. Essentially, my kidneys were very close to completely ceasing function. I had to endure being flooded with IV fluids and sodium bicarbonate. During my seven day hospitalization I gained twenty pounds due to all the fluids I'd been receiving. My nephrologist also informed me that since my kidneys had received such a severe shock that if I ever experienced renal failure again it could put my kidneys into chronic renal failure and I'd be on dialysis the rest of my life. That scared the crap out of me! The whole experience did!

So as to your inquiry about the worst that could happen....this is a major possibility. Before you start any kind of medicine, especially a major one like this, take a moment and research it, if you can. Biologics can be helpful but they can also be deadly.

I wish you well with everything.
 
Hi:) So many scary stories about remicade! When I started remicade a year ago, I was so sick, I was just so relieved that there was a treatment out there for me. To me, it is a miracle drug. Because of remicade, I feel more normal and more healthy than I have in over a decade, and I have been (mostly) kept out of the hospital. I finally feel alive again. As of yet, I have not experienced any terrible side effects. When I first started remicade - my first infusion - I tried to go running and had a cough for about a week. Chest infections I hear are a normal side effect, but I haven't been sick since (not even a cold). I love remicade, and I love getting my treatments.. I look forward to it every 8 weeks, and I am so thankful that there is a drug out there that can give me an (almost) normal life.

When I first heard about remicade, I was so sick, the risks seemed so small compared to what I had to gain. I was desperate to be on my feet. I am scared of the increased likelihood of getting cancer (especially being on 6mp and remicade) but the chance to lead a normal life everyday for me is just so huge, it's worth just about any risk - especially since the chance of getting cancer from the drug is still very small.

The downfall? I start relapsing about every 6 weeks until I get my remicade treatment. I feel like I'm getting my batteries recharged when I take remicade. When my next treatment is due, my body feels it and itches for my treatment (remicade is not addictive). My doctors are deciding whether or not to move up my treatments to every 6 weeks. I am on remicade and 6mp. Our plan is to keep me on remicade for several years to stabilize my disease and, once the 6mp starts taking effect, I am expected to be taken off the remicade and stay on 6mp indefinitely to control the disease. The 6mp is intended to provide more continuous, stable treatment, but it can take years to acheive that.

The best thing I can tell you is to talk to your doctor about your risks, and make a decision based on what your possible gain is vs. the possible harm. Your doctor will be able to help you come up with a plan that works for you. Good luck, and I wish you health and prosperity!:)

Edit - Just a note, on the chances of increased infections, I have struggled with staph for a long time (since before starting remicade) and have not noticed that the remicade makes it worse - I have only gotten better. I will likely be having surgery soon to close a fistula, and my doctors' advice is to time the surgery with the remicade treatments and go on antibiotics before and after. However, I have been on antibiotics consistently on and off for over a year due to the fistula so I may not have had opportunity to notice the effect of the remicade.
 
I have similar feelings about Remicade, Loriebird. It was a lifesaver when nothing else could manage my stricture. A day or two after the remicade, I can literally feel the area opening up a little more and I'm able to eat with less pain and nausea until it's all gone. I do feel like my remi "batteries" start to drain at week 5 or 6, and the next dose is like recharging. My GI has restarted me on a loading dose, and it's being timed around my resection in the hopes that once the narrowed and ulcerated area is out, the remicade can put the rest of my bowels in remission. I'm so close. I got a flu shot and a pneumonia shot last year in the hospital. I haven't gotten any infections, or even colds, while I've been on it. That's pretty amazing to me, since I have two children in elementary school! We are good hand washers and I keep sanitizer around. The only problem I've ever had with the remicade is joint pain the evening after my infusion. Compared to the Crohn's pain, I can't complain a bit.
 
Hi Hannah-Rose, I have been recieving Infliximab since the start of April this year. So far it has been a miracle drug, thankfully and long may it last. I was diagnoised 17 Sep 10 so in a relatively short period of time I have gone from having every drug option ahead of me to having none. I began my road to remission on pentasa..... to budesonoide..... to Imuran and all these drugs with Pred all along the way (of which none worked) to now my final option of Biologics. When my consultant mentioned Remicade I was so scared as the side effects can be so serious. I'm so glad I did choose this route for me, it was Remi or a resection. I had googled side effects and scared myself so much....... but I just thought that sometimes in life, you need to take a leap of faith and hope it's the right decision. Although this drug is not right for everyone, it helps so many IBD patients live a normal life. From my experience, the advise I would give to you is, do what you feel is right for you along with the information which is provided to you from your consultant. Try not to read too much on line as you may find more negative experiences than positive ones, which may not reflect the true statistics. Whatever choice you decide to make I wish you luck and try not worry about cancer and other illness/side effects as a result of taking these drugs. You need to consider the quality of the life you want right now (pro's and con's list are most helpful), as who knows what the future holds (a cure, hopefully). Take care and best wishes
 
hannah-rose said:
Will it give you cancer?

Will it kill you?



I know about all the little side effects - painful joints, rashes, flu like symptoms - but what's the WORST CASE scenario with this drug? And do you know anybody who's experienced these side effects?
Click to expand...

That is a good question. It does say that Remiciade could cause lymphomas and certain type of rare cancers. It scares the hell out of me. My husband has been taking Remiciade for 10 years so far so good. keeping fingers crossed that it keep working for him. He got Osteoporosis but that is side effects of pred that was on and off from years ago. I am looking and researching into other meds that might work and have fewer side effects.
 
wow! lots of good info. thanks all! so glad this forum exists. I am scheduled for my first infusion on the 23rd of this month and am just keeping my fingers crossed that it can help.
 
Worker great for 8 years, but got cancer

Hannah-Rose,
It really helped me stop a servere case of Crohns and was a life changer. However, I am a non-tobbaco user and got tongue cancer (Squamous Cell Carcinoma). This is normally linked with tobbacco and/or heavy drinking. I have been off the medication for 3 years and fortunately been doing ok without the drug. I have been looking into how wide spread this issue has been. Some doctors did not seem to worry about the link and others told me to stay away, especially after the cancer.
 

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