Remicade ( or “Infliximab” as some might call it) is a relatively new medication first approved for Crohn’s Disease in 1998 that sometimes is used to treat ulcerative colitis patients who are not responding to other medications. Remicade is an artificial antibody, and its use has been approved by the FDA for treating other autoimmune diseases such as Crohn’s Disease, Psoriasis, Psoriatic Arthritis, in addition to ulcerative colitis.
People who decide to use Remicade receive the medication through infusions typically at a hospital or infusion center. The entire infusion process can take anywhere from 2-4 hours.
If you have used/use Remicade to treat your UC, please feel free to submit a review on your experience and rating of the medication below.
In August 2011, while in the hospital for 8 days with a major UC attack , my then GI doc told me I would have to have my colon removed or take Remacaide. I was so bloody sick and in pain, I reluctantly agreed to Remacaide and had the first infusion in the hospital. My blood pressure was so low after I had the infusion, which was weird since I had been on BP meds for years. I was also on IV prednisone , which is what I think really helped me, but the doc said that prednisone is not the preferred drug. I had the Remacaide reluctantly for a little over a year and still was bleeding although feeling better. I did have several side effects: lowered BP, which made me very tired; terrible itching while getting the 3 hour infusion, which was treated with Benadryl into the Iv during the infusion; unable to stand up without extreme pain in my legs, treated with giving me prednisone for 2 days before each infusion; and really bad headaches, which I had never had before taking Remacaide; and became anemic, although that could have been because of the constant loss of blood. My doc said several times that the Remacaide may not be working, but it wasn't until I changed doctors that my new doc had me take the Prometheus Blood Test that determined I had developed 100% antibodies to Remacaide. ( Anyone who suspects the Remacaide is not working should ask their doctor to have this test!) Of course, the Remacaide was discontinued. I went to a homeopathic doctor who is also a MD, who said I was probably allergic to cows milk, all grains and sugar and to discontinue eating them. I then researched the SCD and have been on it ever since with positive results. Whenever I cheat, i get symptoms, but generally have a normal BM once or twice a day. Once I was off the Remacaide a year ago, I have been getting inflamed joints, primarily my knees and right wrist. I now have RA as a secondary result of UC and wonder if Remacade was masking the RA, since it is also prescribed for severe RA or whether the Remacaide brought it on. The RA doc put me on the highest dose of sulfasalazine , which I am now taking instead of Lialda for both the UC and RA. It worked for a while, but then the inflammation has returned. Methotrexate is what is suggested by the RA doc to be the next drug added, but I am reluctant to take any other heavy duty drugs. Is there anyone out there who has had a similar experience? Has anyone taken both sulfasalazine and methotrexate together? BTW, I have had UC for 35 years but have only had two hospitalizations and have been taking either sulfasalazine, asacol, colozoal, or Lailda all these years, and occasionally prednisone . I am convinced that diet has always had something to do with my UC, but every GI doc has told me that diet has nothing to do with UC!!!
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joint and muscle pain
Remicade has worked on healing my colitis. it has taken two years. but I am in remission. after my first couple infusions i experienced really bad joint pain all over and inflammation. i didnt connect it to the remicade infusions because it would start
several days after an infusion. i started taking methetrexate injections for the joint pain, and even thought i may have RA. well for past several months i also have muscle pain in my legs and arms. i told my infusion nurses but they just wave it off as restless leg syndrome. but its in my arms and lega and it lasts for weeks after an infusion. my liver enzymes were elevated my gi thought the methetrexate might be the cause so i have been trying to wean myself off te methetrexate and i have been wanting to stop the remicade infusions so i will cancel my appt or forget to go. i get anxiety every time i have to go for an infusion now. i tried talking to my gi dr but he just waved me off and said remicade is used for RA so it is not likely causing my joint pain. even though the black box warning says remicade can cUse joint pain and muscle pain. i felt like i was bring forced into getting my infusion when i didnt want to. i usually go every 8 weeks but because i was not wanting to go inhad missed my appt. so after my dr made ne feel like i was stupid and i didnt know what i was talking abt, i went to my infusion. it had been 12 weeks. since my last infusion, and i had not take methetrexate in over a month. i felt good going into te infusion. as soon as the infusion started my leg muscles started cramping, and my ankle joints hurt. i got up to use the bathroom and it felt like ice picks were bein stabbed into my ankles. i told the nurse, she said "oh your legs hurt?" and that was it. i left hurting. and it has been 3 weeks i still hurt. i havr decided not to go for anymore infusions. which scares me if my colitis starts back again. but id rather have an ostomy then have liver damage from taking all theses meds and feeling like im 100. besides the joint and muscle pain i get headaches and feel lethargic for a few days after my infusions. i think remicade is good for getting colitis and crohns under control but i dont think it is good to be on long term. and i think doctors need to listen to their patients.
I get Remicade Infusions every 6 weeks for almost 2 years now. It took almost a year to see results. I have had no bleeding since April. I also take Lialda and Imuran. My white blood count is monitored closely but have not gotten sick thus far.
I was told a year ago that I either could have my colon removed or start the Remicaid infusions. It was not rocket science to make that decision. I have the infusion every 8 weeks with absolutely no side effects and hope to go to every 12 weeks in January. My only prayer is to have this success continue.
Very bad things can happen with Remicade
The only reason I'm giving one star is that Remicade did stop the constant diarrhea my son was experiencing. He is a teenager & athlete. He was hospitalized with sudden onset severe pancolitis, and the GI at the hospital told us Remicade would be started immediately. Ten days later he lost the use of his left arm. Both neurologists stated Remicade caused the nerve damage and it is likely permanent. Our GI told us NOTHING about the potential serious side effects, we received NO drug printouts or information. For a high school athlete to suffer this damage has been devastating. Based on our experience, I would never recommend Remicade as a first-line treatment, and I believe it is unconscionable for physicians to prescribe it as such.
Remicade saved my colon (and my life)
In 2009, I was diagnosed with UC. However, the GI I had at the time did not believe in Remicade and put me on Asacol and ever increasing treatments of steroids that failed.
Eventually, things got so bad that I decided to switch GI. But it was almost too late: while doing an MRI, the new GI discovered a blockage arising out of scar tissue in my colon. He sent me to the ER and they proceeded to drain 2 weeks worth of food from my body. Stable, they looked at 2 options: Remicade and colon removal.
The number of disclaimers over Remicade working was overwhelming but I pushed for giving it a try before we cut anything out. In less than 12 hours, I moved from a critical situation to a patient in remission.
Since then, I've been on 8 weeks rotations and it's worked so far.
So big thumbs up for Remicade from here.
Works for me
I have nothing bad to say about this drug...so far. I have been on it for a year and a half. I go every 8 weeks and this is the first time in 5 yrs that I have been in remission. My diarrhea stopped after the 1st infusion and I have not had a flare up since. Only side effect so far is it makes me sleepy after the infusion. I haven't noticed any problems with my immune system either (I am a RN at a hospital) so I am exposed to a lot of bad stuff and am doing well. Recommend it.
remicade review 2013
I've just had my 19th infusion of remicade. It does work wonders for me. For the first two infusions I was still being weaned off of prednisone., but since then it has been my salvation. I have however, gone from 12 weeks intervals down to 5 weeks and so far so good. My body uses up the meds quickly (unfortunately) and 7-8 days prior to my infusion all the UC symptons return with a vengeance. I'm 61 years of age and hope to continue working until 70 and as long as my medical is covered. After 70 I'm on my own and we shall see what happens. Thank you Adam for this website - I have shared it with friends and family.
I love Remicade!
I just had my second Remi Infusion a few days ago. Starting Remicade was a difficult decision to make and I had postponed it for several years - the negative reviews and the allergic reactions people talked about were frightening. At the infusion center they give you benedryl/claritin and tylenol before you start - so this probably eliminates the hives and rash reaction I have read about. I felt better - stopped bleeding - within about 48 hours. After my second infusion I have felt better than I have in years since I was diagnosed. My insides feel so calm and it is like a miracle. I am trying to do everything I can to keep feeling better in case Remicade stops working for me. I am still mostly on SCD; L glutamine; Vitamin D - 4000; Apriso. But I have tapered to 2.5 Prednisone after 9 months of not being able to go below 10-15 mg. And hopefully I will be able to stop Prednisone in a few days without flaring because of the Remicade.
I will submit a Remicade update after Infusion #3 next month. I would recommend Remicade if your doctor suggests it and you have run out of treatment options. Good luck to all of us - each of us responds to different treatments - and we all deserve to be free of these life limiting UC symptoms.
REMICADE ALMOST KILLED ME.
ALMOST KILLED ME.
I was having the worst flare... they kept pushing and pushing and pushing Remicade--- so I gave in. Had 2 infusions and it did NOT do anything but make me worse. I had nose bleeds, headaches, extreme joint pain, extreme fatigue so bad, that I was like a 90 year old woman who couldn't get out of bed for weeks. I searched the Internet day and night to see how long this crap takes to get out of my system. I think 6 weeks.. it's been about 8, and I feel much better, but ONLY because they immediately put me on a 40mg of prednisone course, again... (I was down to 10mg of prednisone when I started the REMICRAP.) It may work for some people, but for me, it was the WORST thing I could have done. I will NEVER EVER try any type of Humira or Remicade again. The only thing that is working and making my left-sided UC tolerable is the Asacol and Prednisone.
Please read the REMICADE reviews all over the Internet, and be warned that drug companies put up fake stories about how great it is in comment sections such as these. BTW, my EX DR. (I mean pharmaceutical sales rep disguised as a Dr.) went on vacation to HAWAII right after he pushed his drug on me. LOL. He is such a coward, when I had the called the office in tears having a meltdown, he had his minion nurses call me back. And they were STILL PUSHING REMICADE ON ME!!!! SCUMBAGS are out there. BE WARNED. Eat healthy. DIET IS EVERYTHING.
I've been using remicade for over 2 years now, and have never had any side effect, liver and kidney functions good, etc. After a 6 month flare with upwards of 50 mg prednisone doses (which did nothing), losing 35 lbs, being bedridden, and filling the toilet with blood 30+ times per day, my symptoms were gone two days after my first infusion. Now continue every 8 weeks, with diminshed effectiveness around week 6 but in conjunction with mesalamine and probiotics, still manageable. The savings plan Remistart also knocks hundreds off the cost, which is nice.
Remicade didn't help me. It did when I first started it, but then failed me miserably.
best treatment for UC
I been on Remicade for 5 years , every 8 weeks 300-400 mg since 2008 … great medication never had a single side effect… it helped a lot with reducing the number of stool the pain and the urge to go to the bathroom… I am not even bother by the 3-5 hours I spend every 8 weeks… it gives me great relief
Remicade works for me!
Tries Aprison, LIalda, Canasa, cortisone enemas, mesalamine enemas, prednisone, and 6-MP. Bleeding and frequent BM's got worse and worse over a two year period. Remicade as a last resort -- worked instantly! Amazing, massive bleeding stopped the very day of the first infusion. I'm now on nothing but Remicade and it's been 1 1/2 years. Started having symptoms around 6-7 weeks after infusion a few months ago and am now being infused every 6 weeks. Got a minor rash about 4 days after my first infusion of the 6 week interval. Hope it's not related ...
Didn't work for me
Tried remicade and imuran both after last gasp to save the large intestine and put UC in remission. Had tried every other possible medication, diet, lifestyle change, complimentary medicine practices - everything that was safe of course, not matter what the expense.Had 3 infusions of Remicade along with 3 months of Imuran. Nope, that didn't work either. As stated in Predisone review the large intestine finally went to the big dead organ field in the sky. After ileostomy surgery have discovered that there is such a thing as life without pain. After 29 years of that sh@#)(*Yt, imagine!!! As for Remicade, Imuran, Prednisone, Asacol, Mesasal etc etc, "thanks for the memories", has been a wild ride.
Help with costs
I've been on Remicade since Dec 2011 when I was in the hospital for UC for the 2nd time. I had an allergic reaction when they tried to double my dose, so we went back to the lower dose and it takes 4-4 1/2 hours because they have to give it very slow. It is truly the only thing that finally put me in remission. For those concerned about the ridiculously high cost, look up RemiStart to get help. They give you a visa type card and reimburse you some of the costs. Every little bit helps.
Remicade is the best
I have had 5 infusions of Remicade and 6th is scheduled for next week. After my first infusion it took about 2 weeks before I noticed any relief. But now feeling great and it has been 10 weeks since last treatment. My out of pocket costs though are quite high but willing to pay since the drug has put me in remission.
I was on Remicade for an entire year. In that time I started out @ 4 hour infusions every 8 weeks. I saw a little inprovement but my UC was so bad that anything was better than the 40plus times a day I was running to the washroom.My GI said we should double the dose (which was the max) and shorten my visit span to every 7 weeks to see if we could get me some relief.I kept waiting for it to really work its "magic" but it never happened. Instead I had heart paliptations rashes and vomiting durring what was my last infusion. My immune system was so weakened durring the treatments I had 2 bouts of pnuemonia and it has triggered Alopecea which is an autoimmune disease.I was taken off this drug and have since had to have an iliostomy.I went through hell and was willing to try just about anything I really wish it had worked instead of this out come. I would never tell anyone not to try something that could possibly help, but unfortunatly for me, it was a last ditch effort in a lost cause.
It definitely works!
I've been on Remicade for almost 2 years now. I've been able to get off of all but Apriso, thanks to Remicade. I have no more pain in my belly, solid BM's, & I can pretty much eat what I like. I still see some minimal blood though. Overall, it has given me my life back. I definitely recommend it to those considering this treatment. I go every 8 weeks for my infusion.
Infliximab or as others call it rat crack
I was put on infliximab when I had my sever flare in 2010 I was in hospital for 5 weeks and nothing was working for me I was still going 20 times a day then my GI recommended I try infliximab my first infusion I really don't thing I noticed anything, 2 weeks later I had my second infusion and my bowel movement went down to 10 but because I live in australia infliximab is not provided for UC under the PBS so if I wanted to continue the treatment I have to pay $4000AU dollars per treatment. My GI was able to convince the hospital to give me one more treatment so in total I was given 3 infusions free which I think did start to help but because I can not afford to continue with the treatment I am no longer on it.
Works OK but too expensive
I've been on remicade every 8 weeks since 2007. Initially, I did not have a great response and then it started working better but never got me into 100% remission. I can tell when it's time for my infusion by my symptoms usually and then do notice improvement after the infusion. However, it is not the silver bullet I was hoping for and it is really, really expensive even with decent health insurance.
working well so far
Started Remicade in September 2012, was having a bad flare that landed me in the ER and hospitalized for 4 days, and was put on it and imuran. After a couple days I was much better, and a couple months I was in remission. I wasn't sure if it was the remicade or imuran but we decreased by does from 150 of imuran to 50 and I am still in remission so I think it's the remicade. After being sick for several months, it was great to have something work and I feel great. I think it may be making my hair fall out, again not sure if that is Imuran or remicade though. Other than that no problems. My blood work is constantly checked to make sure the meds are not causing any issues. I don't plan on taking it for more than a year, because of the potential side effects. But it really has worked great for me.
I had a flare up of my colitus for over 22 months...my GI Dr. wanted me off the Prednisone so I started the Remicade infusions.....worked great!!!!! Got my life back :)...sort of! The Remicade is believed to activate Valley Fever. So, they immediately had to take me off of Remicade. I currently take Asacol and Imuran. Thingshave improved but now have to take another med for the Valley Fever!
remicade and 6mp together
I was on remicade with 6mp for 5 months. the combo worked well but when I had to stop 6mp due to high liver enzymes, the remicade was totally ineffective. I started 6mp and felt improvement on it before I started remicade so I have never known if remicade really did anything or it was the 6mp working the whole time. anyway, the main side effects I had were migraines and frozen joints. besides that, it wasn't a difficult drug to be on.
I've been on Remicade for almost two years. I started going every 8 wks but eventually had to go every 6 wks because I started feeling bad at the 6 wk mark. I now go every 6wks. . My issue now is my joint pain. My GI says it is working on my gut but my rheumatologist says I may need to switch to Humara. Being with Tri care standard I do not qualify for remistart so the price of Remicade is expensive for my out of pocket costs. I also feel very tired the day of the infusion and have a headache the next two days after. One plus for Remicade is I have not had a bad flare since being on it.
I have had my 3rd Infliximab infusion now and things are looking up. After my first infusion my diarrhea went away within a day or two... The first time in over a year! I have had 3 infusions now and my life has turned around. I am back running, going to the gym, mountain biking, and generally feeling great with life. I still have some residual abdominal pains, but not having to use the toilet 10 times a day has changed my life! Definately worth a shot if nothing else is working.
Hey just wanted to let you know about this drug at the moment its my life saver last october i had a severe relapse when a surgeon spoke to me about surgery removing everything over a year and ending up with a bag. I freaked out its sonething mentally i could not handle. I spent over two weeks in hospital my consultant in consultation with two more spevialused in the field put me back on remicade with high dose steroids given before the infusion six months on and its still working ok some side effects numbness occasional severe pain headaches nausea. I cope beter now but i admit i do panic and wonder if it stops working surgery will be my only option. Just to say i was on remicade from march to december 2011 and i had to be taken off it due to severe reaction and a build up of antibodies to it. I am also allergic to humira have lupus from this. I live in hope and am very grateful to have the consultant i have. Good luck everyone.
I've had 3 treatments so far because everything else has stopped working for me. Remicade appears to be doing the trick so far.
Couple of weird things I've experienced since starting it:
Shortness of breathe --
Serious joint pain --
Not sure if it's related, but never had any of that before starting treatment. Overall, it keeps me in remission, so I'm a HAPPY CAMPER.
I struggled with UC from 2005 until I was finally given funding for Infliximab (Remicade) in Nov 2010. From the second infusion my life Was transformed. I had never felt so well!
Unfortunateluy in dec 2011, the NHS took away the funding for my treatment and by feb 2012 I was out of remission and in full flare. It has taken serious ill health, 2 hospitals, 2 consultants and 12 months to finally get the funding approved this month, its just a shame that my bowel is now totally infected and they have advised surgery may ultimately be the best course of action (well its cheaper than infusions isn't it!).
This treatment may not work for everyone, but it gave me my life back and I think its definately worth trying.
Good luck to all x
My miracle drug
I love this drug in mAtter of 4 hours on the 1st infusion I was no longer bleeding.. I have only had 2 infusions I am currently fighting my insurance so I can continue on this
Worked but also tried to kill me
I started Remicade in 2011 and it worked almost instantly. A day or two later I had only one "normal" bowel movement per day and absolutely no blood. After about 3 infusions I decided to take a more natural approach by changing my diet and adding supplements. That didn't work so I went back on Remicade after about 6 months of experimenting. I had about four more infusions when the doc noticed my liver enzymes levels were that of a serious alcoholic a.k.a not good. I never had another infusion after that and I'm glad. I was determined to use absolutely no medication this time. After a bunch of research on which supplements to take and going 100% gluten free, I've finally been symptom free for about seven months. It wasn't fun in the beginning but I couldn't be happier now.
I had ulcerative colitis for over 30 years. Treated will prednisone, azulfidine, asacol and apriso and my colitis remained active. Last year I was at the point where I couldn't control my bowel movements. Very difficult when you work full time. Last year my Dr suggested Remicade. My first infusion was last Sept and I have been in total remission since. It is worth sitting three hours every eight weeks. I wish I had started treatments sooner.
Remecaid did not work for me
I had 3 Remecaid infusions. None of them helped to stop the diarrhea or the bleeding. I eventually had to get my colon removed b/c it became toxic. I'm pretty happy with my J pouch, though.
Remicade Not For Me
I took Remicade for 15 months. After the first infusion I saw great improvement but after that it was just OK. I also took Asacol daily and still flared twice in 15 months so I had to take prednisone anyway. Between the cost, lackluster results, and having to go back to prednisone I decided to stop taking it and signed up for jpouch surgery. Now I take no medication and feel great! Different things work/don't work for all of us. Remicade wasn't for me.
Used to work - herbal meds better
Began infusions late Dec 2011 after being admitted to the hospital for the 2nd time. The second infusion was a week after the first, then 2 weeks later, then 4, then 6. I tried 8 but couldn't go that long between treatments without blood and pain. It was literally like magic after getting the infusion. I would have an appetite, my stomach swelling would go down and I felt better. Downside was feeling tired the rest of the day after treatment, extremely achy and stiff joints - worst was just the time it took. I got infusions starting 7:30am in the hospital IV outpatient Therapy and wouldn't be done until about 10:30 (mostly due to the meds not getting ordered straight away.)
By Oct 2012 I found the infusions were doing the reverse - immediately after I felt horrendous. For 2-3 days following I would feel like crap, diarrhea, blood and no appetite. I stopped remicade last month and have had more good days than bad! I'm still taking 2 Lialda and probiotics - along with my "herbal" medicine.
Remicade was a great drug as far as the colitis was concerned; I achieved remission fairly quickly. But I had 'medication induced leukocytosis' from the drug and had to stop taking it. It is one of the listed side effects, but it was still pretty scary looking at a leukemia diagnosis. Thankfully, as the drug washed out of my system, my counts normalized.
I would definitely try biologics in the future, but I would be sure I was monitored more closely.
I started Remicade in July 2011 after a very stubborn flare that was not improving. It worked right away! I have been on it ever since. First every 8 weeks and then after seeing symptoms near the end of the 8 weeks I am now down to every 6 weeks! The only side effects I have seen are some dry skin patches on my legs and some scalp psoriasis. Not fun to deal with but better than a colitis flare!
Total change since November when I couldn't even function normally! I am not 100% but at least 85%. I just recently had my 4th infusion. The remicade makes my body feel like jello until the next day and lots of sleep is needed
It's what does the trick
My G.I. and I together decided to start up with Remicade after a couple of months of bloody, slimy diarrhea, which wouldn't stop after two prednisone rounds.
After 2-3 days, the improvement was apparent. Now, almost 4 years later, I've never returned to the bloody, slimy, diarrhea-phase - just one period of firm stools with occasional blood.
With minimal side effects, this really is what does the trick for me. I live a close to normal life, with 4-6 bowel movements a day. I know, the UC isn't cured. But it's so much better than what it could be. Remicade = thumbs up!
I must add though: It seems as though each and every persons response to Remicade is different. If you are in the thinking-about-Remicade-zone, I advise you: Try it out! Best case scenario, you get into remission. Worst case scenario - well, you keep looking for a solution that fits YOU.
Thumbs up for Remicade but cost is steep
When my husband started Remicade there was no change at first. After two infusions my husband decided to go to Emory for a consult to remove his colon. While there they started him on steroids and switched him back to the very first medicine he took, Sulfasalazine. They kept him on Remicade too. After adding the meds to the Remicade it was like a miracle. He was finally seeing results when absolutley nothing else had worked. After about 6 months he weaned off of the Sulfasalazine drug. The Remicade worked great from then on out. Unfortunately, it got where it was hard to afford after 2 years. Recently he switched to Humira because it was cheaper. Remicade gave him a life back though. He was in a dark place before starting it. It was heartbreaking to watch. He had no issues with side effects except minor joint pain in the hand of the infusion. He also disliked having to drive nearly an hour to the infusion facility he used. Apparently, not just anyone can do the infusions so he couldnt get them locally.
The side effects were horrible. I literally could not function. It did stop the bleeding but did not seem to have much impact on the number of stools.
Worked then Stopped for Me
My first infusion of remicade was like a miracle. My symptoms literally vanished in less than 24 hours, and it was the first hard poop in months. Unfortunately, the medication did not work as a long term solution and towards the end of my first infusion my UC symptoms were coming back. The 2nd infusion had little positive effects, and the third infusion had no positive effects at all so the decision was made to stop the medication. The only reason for two stars instead of 1 or none, is because it did give me some temporary relief when things were not going well for about 10 days... I hope others have had some much better longer term positive results with remicade!