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.
Remicade works very well for me
I have had Ulcerative Colitis for about 20 years, 40mg a day of prednisone would get it under control but once I started to taper it would come back and on 40mg it was hard to sleep, I was "edgy" and there are other negative long term affects. I had to go onto the double dose 10mg/kg but it is fully under control for 9 months now. I don't even think about what I eat or where the nearest bathroom is anymore.
It is very expensive $30,000 for each treatment (in the Boston area), but remistart covers $10,000 of my family yearly maximum copay of $13,000 so my out of pocket is only $3,000 for my family.
I had tried humira and cimzia and imuran and none of them worked.
I hope the cost goes down because I'm worried my insurance will not continue to cover this $180,000 annual bill.
Remicade worked but antibodies are building
I am writing about the experience my son, diagnosed with UC one year ago at age 17, has had. He was in bad shape when he started Remicade. Had a bad reaction to lyalda and was in ICU for a week and over 5 weeks in hospital overall. Anyway the Remicade worked very well and the great news is it allowed him to resume his athletic seasons this past spring and summer. He is back to ful weight and in good health overall. The down side is that the last two or three readings have shown his body building antibodies to Remicade. The next step according to his doc could be humira. We have seen the side effects in various publications and do not want to use it if possible. We decided for now to stay with Remicade and see what happens. He is now three hours away at college which is not too far to deal with any issues that arise. All in all the Remicade worked well. I hope it continues to do so.
I have been on remicade infusions for six years now with great results, I had exhausted all other meds and my GI doctor recommended remicade. I live a full life with out worrying about what I am eating. I have had crohns and colitis for over twenty years. It is very expensive in my home town area, but you can get the treatment in the Midwest for a third of the price for those that have to consider the cost. I hope it works forever. Only setback is that I have to run very slow drp due to heart complications if I run to fast, but I will take the five to six hour drip over all the other meds by mouth.
Anti - Infliximab Antibodies
6 MP caused toxicity to my liver. I have tried Imuran, Lialda etc.. When it was recommended for me to go on a biologic that was a big step. I have been on Remicade for one year and flaring on occasion but when it lasted for 3 weeks I saw my GI and he ran the regular blood tests but also a test to see if my body had built up antibodies which countered the effectiveness of the costly investment in Remicade infusions. I look like an Olympic athlete on all the blood work / samples / CdIFF etc.. but the last line on the 6 pager pointed out that my anti-Infliximab level was 157 with 22 being normal. My GI told me this over the phone and I figured he would immediately change my meds but he insisted on another round of Remicade after waiting 2 weeks. His recommendation was Humira if Remicade did not work. I was diagnosed 6 years ago and have gone through 4 different drugs. This does not appear to be resolved with drugs alone IMHO. Has anyone had anti-Infliximab antibodies above the normal and what were the next steps.?
Has anyone been prescribed a double dose(about 10 to 12 mill I think) as a result of poor results from the first three infusions. My GI is trying this before we move on to the next drug. The drug supplier in Canada (Jansen Bio Advance) says that sometimes the disease is so active you really need to hammer it hard and that they have had some very great results doing this. No percentages as yet but great results. Has anyone been down this road with a turn around result from a poor start?
Gave me my life back
I was diagnosed with UC 14 YR's ago. Couldn't leave the house, couldn't walk down the hall at the Drs office, needed a wheel chair. Started using remicaid 14 YR's ago, was told it would last about 5 YR's. I tried all the other oral meds, nothing worked. After two infusions I was a whole new person, and been working great since. No side effects after infusions for me. Pray is works another 15 YR's.
I have moderately sever UC, unresponsive to Asacol HD (mesalamine) and Imuran (azathioprine). I had three Remicade infusions (week 0, 2, 6). The good news is that I had absolutely no noticeable side effects. The bad news is that I did not benefit either. It MIGHT have had a slight effect on the frequency of blood in the stool, but that's it. After week 10 and flexible sigmoidoscopy, my GI concluded I was non-responsive. On to the next drug.
Getting my Life Back
I have been very fortunate with remicade/infliximab. I was diagnosed with Ulcerative Colitis in 2010. I’ve two small children and with moderate colitis it was killing me. After trying all the levels of med’s I was still taking regular trips into hospital for a few weeks, I was on constant steroids, as soon as I would taper down off them I would flare again. Diet helped a little but didn’t stop the flares.
In May 2013 I was admitted to hospital again, I’d given up completely. I had three years of ill health where a ‘good day’ was when I could leave the house for a walk for a few minutes!!
I had no more energy to try and fight, I was constantly housebound and feeling depressed. My Doc started the Infliximab that month. By Christmas 2013 I had my life back!
I am back playing OUTDOORS with my children, I am back working, I am back being Happy and I am back running. I have to watch what I am eating and cannot push myself too hard in training but I am living a life that is dominated by fun with my family and not a disease.
I pop into hospital every 8 weeks for four hours and don’t think about ‘being ill’ for another 8 weeks! I know infliximab isn’t for everyone but I am very fortunate that it has & is working for me.
Works for me
I was diagnosed with pancolitis UC in Sept 2012. Started prednisone, Mesalamine, and Imuran. Was improving for 2 months and getting really close to remission then declined because the Imuran was shutting down my pancreas. After a week in the hospital I started remicade and was still severly sick for months and found out I also had a c-diff infection. After a couple months of treatment I was c-diff free and started to go into remission. 12 months after diagnosis I was finally tapered off the prednisone. Have now been in remission for almost 2 years. lost 40 lbs and found it again. Just taking remicade every 8 weeks and daily mesalamine. I have occasional bouts where symptoms return but never more than a few days and no bleeding. The drug cost is high and its no longer a preferred with my insurance so I enrolled in the remistart program. Have considered switching but feel that this works pretty well now and once you stop you will build antibodies and it will never be as effective again. I also feel like hell just after getting the infusions for a day or to but nothing that stops me from working.
I have moderate to severe Crohns Disease. I've had over 15 surgeries in the last 13 years with numerous hospitalizations due to blockages, etc. I've been taking Remicade since October 2005. I had 7 surgeries in 7 months in 2007, a blockage in 2006 and a couple of hospitalizations in between. I continue to go to the bathroom 5 to 20 times a day depending on if um having a bad day or a "normal for me day." Some nights I don't get much sleep because I'm in the bathroom all night. I'm just wondering when should I call it quits with the remicade? It's been 10 years and I'm still suffering but my GI seems to want to keep things status quo. Wtf?!
Infliximab was my saviour!
I know it doesn't work for everyone but it certainly did for me! In 2013 I was in hospital for 3 weeks on oral and IV steroids which weren't controlling my horrendous flare. In the UK, the drug isn't available for UC (yet it is for Crohns) under licence unless for emergency treatment where other drugs aren't working. It took 5 days for my blood test results to come back to say we could go ahead. I've never been so grateful to see a bag of clear fluid in my life! Within 24 hours my inflammation had reduced and 2 days after that, my 1st normal poo in 6 months! I was ecstatic. I had 2 more infusions after that and my symptoms were in remission. Since I can't take it as a maintenance drug, I'm now on Mercaptopurine and despite some initial nasty side effects, my bowels are all good a year later. Happy days!
Remicade worked brilliant for me after 6 months
Remicade gave me my life back! I had severe pan-colitis and after 4 years of horrendous flaring and becoming steroid dependent (every time i tapered off the pred i would flare again) i felt like there was no hope and i would have to have surgery. I had tried 6-MP for 9 months and although it helped at first, i then ended up in a terrible flare in hospital for a week. Also whilst on 6-MP i got pneumonia and nearly died in hospital, as a result of the immuno-suppression so I didn't have much hope for Remicade as i was worried about having my immune system suppressed again. However i was told it was my last resort before surgery and so started it along with Azathiaprine which I was told would help stop me building up antibodies to the Remicade and would make the drug work for longer.
The main thing i want to share about Remicade from my experience is be patient with it as it can take quite a while to work. My doctor told me that on average it took people 4 months to get into remission on Remicade but in my case it took 6 months. At 3 months on the drug I had to go to hospital for 5 days with a flare and be placed on IV pred again, but my doctor persisted with the Remicade/Azathiaprine. At 5 months I had another small flare and took a course of pred starting at 30 mg and tapering down. But after tapering off that course of pred at 6 months I have been in perfect remission ever since. And when I say perfect I mean no pains, no diarrhoea, no bleeding, no urgency, no sickness, no debilitating fatigue and only 1 or 2 solid BMs a day. I now feel like the person i was before i got UC which is something i could never have imagined happening again!
I should mention that I do also watch what i eat very carefully, without which i dont think i'd be in remission - so no gluten/wheat/oats, no lactose, no sugar (except honey), nothing too acidic (raw apples, pineapples, oranges, kiwis, carbonated drinks), and nuts/seeds only in the form of flours and butter. I also try to avoid grains where possible, so if im baking i will bake SCD recipes, however I can eat white rice, gluten free bread, rice cakes etc with no problems. I also have to be very careful with exercise and can only do gentle/low impact stuff like walking/yoga/gentle dancing otherwise ive found it causes symptoms... although the longer im in remission, the more exercise i am finding i can do.
I wanted to share this with you as i read this page many times when trying to decide whether to start Remicade and wish I had just started it sooner. I do get a respiratory infection about every 3 months which always requires antibiotics to clear it up so you have to be careful and avoid people who have coughs/colds etc.
I should note that I had also tried the SCD diet for 6 months which although it reduced my symptoms significantly it didn't get me into remission. I also had a 2 week course of faecal transplant in a clinic which helped but didn't keep me in remission, although it might have done if i could have afforded to continue the treatment.
After dealing UC for three years before being diagnosed, I started on Remicade... previously, I was already taking Humira for Psoriatic Arthritis and Psoriasis... apparently the Humira should have been working for the UC as well, but it didn't do anything for it. I could feel a tremendous difference even after my first infusion. Remicade has definitely turned my life and they way I think about life, around... I was at a point of wondering if I could continue to work... now life has resumed and I'm glad I did not follow through on trying to get a disability! NOW.... 2 months ago, I was about 2 weeks late receiving my treatment; I had to postpone due to a new job. I really felt the affects of only being off by 2 weeks! I figured once I received my infusion everything would be good again. Now, I am not sure if it is coincidental on the timing or if by being late that 2 weeks messed things up because ever since then, my treatments no longer last the entire 8 weeks. I find that they are lasting up to around the 5 week mark and then all symptoms return... I get so tired and nauseated... well, you know what it does! I am seeing my gastroenterologist this week and will see if he will up my dosage--- in the meantime they increased my visit dates from 8 weeks to 7. Despite this happening, I still believe that Remicade has made a difference and should be considered as treatment if you are thinking about it.
A few years ago I had a devastating flare that almost took my colon. The Dr. put me on Remicade. It started well for the first few months, then I started getting terrible rashy spots on my skin all over my body. My colon got better partially, but not all the way. She said I had a partial response to the treatment. She kept me on it, but in the mean time I was catching every infection during the winter months....it didn't help that I worked in a nursing home. I had 3 sinus infections, ear infections, UTIs, etc. A few months ago I told her I was fed up...I was going to the hospital to sit through infusions every 6 weeks. I was still having chronic flares where I would have to go on Prednisone intermittently. Remicade worked only partially for me...it lowered my immune system drastically. In January I'm scheduled for the left side of my colon to be removed. No more Remicade.
Remicade gave me a new life
If Remicade did not come into my life, I don't think I would be where I am today. I'm a 19 year old female who suffers from Ankylosing Spondylitis after breaking my hip at a swim meet. The AS spread from my left hip into my right hip, then down to me knees, and finally up into my back. At 14, I started on Enbrel, which only worked for me while the AS was in my left hip. As it began to spread, the Enbrel slowly started to stop working. It will be a year next week that I have been on Remicade, and I can say that it has given me my life back. I am swimming again, running, dancing, and have a part time job while going to college full time. Without this medication, I would be glued to my bed like I was when I was first diagnosed. While Remicade hasn't repaired my joints, or fixed my bone erosion, it has given me a 'second wind' at 19. I am 5'8", 96 pounds, and I have no problem receiving this medication. I have no side effects, and usually go to work as a waitress the night after my treatment. The only problem I have is that after my treatment I'm quite tired, but I think that's simply because I've been sitting in a chair for four hours! If you are second guessing going on this treatment, give it a chance. After one infusion, I was already feeling ten times better. Having AS at 19 sucks, to be frank, but without Remicade and my amazing Rheumy I wouldn't be where I am today.
Remicade seems to work but unsure of side effects
I have had UC for 8 yrs and just completed my 3rd induction dosage almost 7 weeks ago and due for my 1st maintenance dosage in a few weeks. I have experienced in the last month or so unexplained bleeding in semen, feelings of pins/needles throughout my body at various times, and now when walking a feeling of off balance. I was currently on Lialada, but after my last colonoscopy in May 2014 GI immediately put me on 50mg of Prednisone then after weaning me off that drug started me on Remicade infusions at 10mg double the normal dosage and well as kept me on Lialada. He wants to do another colonoscopy in a few months to see the condition of my colon as it was in very bad shape the last time he viewed it.
The drug seems to have help quite a bit, but I am worried about all the other things I have been experiencing since starting. GI has told me I will need to be on Remicade for life if it works, not sure I will continue or not and may have to find another GI.
Psoriasis outbreak due to remicade
I had my 3rd treatment of remicade end of May 2014 a few days later I started having little red puss like bumps on my hands and feet...saw my dermatologist and she said it was a psoriasis outbreak due to the remicade. By July I am in a full on outbreak my back, butt, arms, upper thighs. I am also suffering from severe upper and lower back pain. This is the worse drug I have ever put in my body. I will never do another infusion again.
I am been taking remicade for 6months.I feel extremely tired all the time,breathing problems and muscular pain.Prednisone made me feel better than remicade,I think I will go back to prednisone.
I'm running on 21 years of being diagnosed with UC. Remicade is the only drug I've taken that put me into "remission." They only bad side effect so far is hair loss. I'm not balding but I can tell a difference in the thickness of my hair. I get infusions every eight weeks. A downfall is the expense. With my deductible it costs me around $3K each time. I'm on the Remistart program which helps immensely. So far, so good. I am still on Imuran and Apriso. I still have abdominal pain, but no blood.
10 years plus on Remicade
I had tried everything under the sun for my UC. Nothing controlled it ever so I stopped seeing the doctor. Jump forward to a year later or so, I could not take it any more and went to make a appointment with my GI and he was no longer in the US. So I found another and he put me on Remicade. When it comes to the UC, it's mostly history while doing my monthly treatments at full dose (whatever that is).
Then came this year, I could not afford the cost of the Remicade due to my health insurance. They made changes to comply with Obamacare and now have huge deductibles and I had to say goodbye to treatment, as everything is out of pocket.
Now with some history, I was not sure if Remicade had been working or not. Mostly with stomach and colon pain and I guess IBS. So much so, I have times I do not leave the house in fear I will mess myself.
Now about two months ago, three months out from my last infusion, I start getting more and more cramping. This last two months have been unbearable. So I set up a way for me to receive treatment and worry about payment later.
Not sure how it works yet, but it's call Rem-i-Start. They help you pay for your Remicade. Medicine only, not the cost of anything else.
All I can say is, I believe any drug can have side effects on anyone. More so for others and some not. I have experienced muscle pain, joint pain and arthritis, rosacea, weakness, memory loss, depression,and anxiety. Tested for RA a bunch of times and even diagnosed. Two years ago, seen another rheumatologist and he said I did not have it, maybe fibromyalgia.
And mostly important, I had been fighting rosacea really badly this year. My doctor tried everything to get it to calm down and nothing. Then three days ago after my infusion, my face is cleared up like nothing happen. It got so bad, people could not look me in the eye.
So short story, with or without side effects, it works for me.
remicade saved my life
im writing this because I hope it can help others with UC,,my UC came on very fast,within seeing a bit of blood on my stool to being in the hospital for 2 weeks was a time span of almost exactly one year. my gasterologist told me that in his 20 years im the third patient he has seen that went so severe so fast. no medication worked,, even the predizone steroids had no affect other than raising my blood sugar.. I was 2 days away from having a j pouch and intestines being cut out when my doctor tried remicade as a last resort. I was giving a free dose in the hospital and within 3 days it worked,,,i have been out of the hospital since jan 2014 and have no UC symptoms right now. going for another remicade treatment on Tuesday. remicade saved my life,, I have no symptoms and hope remicade will work for years to come,,
Remicade & Psoriasis
I've had UC since 1994, so going on 20 years. I started Remicade in September 2013 after Humira failed to work to control an off and on flare that has lasted over two years. At first, the Remicade worked quickly, but by Christmas the UC symptoms were back. I had an infusion before year end and it caused my to develop a nasty case of psoriasis on my hands and feet. My GI was stunned that the Remicade did not work so he prescribed a double strength dose for the next infusion. A dermatologist monitoring the psoriasis agreed to proceed with the infusion. UC did not improve and psoriasis has spread all over my lower and upper legs, sides of by stomach, upper and lower arms, and scalp. It's now mid February and I will not take Remicade again, but my psoriasis is awful. I am hoping that my skin lesions will improve as the Remicade leaves my system.
My son just had his infusion of Remicade-he had been on Remicade for 2 years now. He has a sore shoulder and chest bones-achy hands and mouth sores. They will fade after about a week. He used to be on 6-mp with this and unknown to the doctor or myself he weaned himself off-says it made him feel worse like he was dying-those are his words. There is no normal meds for this. It frightens me that they use mouse genes or mouse something in this drug but is seems to be our best hope for now.
Infliximab (Remicade) after 1 year
I started taking Infliximab infusions every 8 weeks along with 75mg of 6MP as most UC medications where not compatible with my body. The Infliximab worked well to control my flare ups which had caused me grief for over a year. The drug definately works in reducing inflammation of the gut, however, after 1 year I am starting to get very strange and painful side effects. Since November 2013, 7 weeks after having the infusions I started getting swelling on my fingers, and feet (especially the sole) and I intitially thought I had burnt myself. These sores got progressively worse. They look like small red marks but are very painful and limited my mobility. I went on prednisolone to take away the inflammation and that worked temporarily. Now in January, 2014 7 weeks out from the last infusion I am having severe muscle and joint pain. I feel like I have arthritis in my shoulders and neck. I am seeing the specialist today but last time he had no idea what was happening. I am convinced this is a side effect from the Infliximab after reading other reviews here. Possibly the drug is wearing off after 7 weeks, and my immune system is becoming over reactive as the drugs effect reduces. Has anyone else had similar experiences? I can't wait to get off this medication.
Started on infliximab 6months ago and for the first time in four years I am symptom free, No symptoms! I go for infusions every 5 weeks and I'm going for a colonoscopy in three weeks, fingers crossed for the all clear. Nothing else worked for me, I've been hospitalised three times in the last three years, with my old GI threading to remove my colon each time so this is a wonder drug for me. I just hope It keeps working its magic
Restarting Remicade post Asacol HD and Prednisone fail
I am restarting Remicade after stopping the infusions 3 years ago when it put me into remission quickly. I've been diagnosed for 9 years now with ulcerative colitis and in the beginning I had severe pancolitis. I use to sell Humera as cells rap and was not comfortable with their lack of longevity in studies in the market and post market studies. I was also skittish of beginning runner Cade because of the possibility of non-hodgkin's lymphoma as a possible side effects in the long term. I was only 30 years old and was not ready to have a colostomy bag so I signed up and the run the cable worked incredibly putting me into remission to where I needed nothing else for a few years.
I'm now at the point where I have insisted on restarting infusions although my entire colon isn't inflamed, after a colonoscopy and a flexSigmoidoscopy revealed inflammation at the proctitis level my doctor was hesitant to restart because he is conservative and dozens relate my symptoms as a patient. Regardless of where in the colon the inflammation is and regardless how much of the colon is inflamed the symptoms are the same and they are terrible and nearly impossible to live with.
Finally I got the doctor to approve and I am restarting tomorrow with my first infusion. Hopefully I haven't become immune to it's antibody.
One thing I was confused by was that my doctors partner feels that once Remicade is introduced that is a lifelong commitment and there are risks to stop and restart. Now doctors have different opinions on their anecdotal experiences but I wish there were more patient communication about the difference of opinion on Remicade and whether or not it should be a lifelong commitment or a third line on and off treatment.
For those patients who are concerned about cost I can tell you that having worked as a pharmaceutical sales rep for Humira and for other companies, that each company is required and does offer financial assistance and or free infusions but you have to ask your doctor to ask the sales rap and make sure the doctor continues to push the issue with the sales rep until there is an answer. The doctor must realize that this is an option for his or her patients and they do you need to act as an advocate for their financial hardship patients.
Always remember Big Pharma does not want people to know about these programs nor do they advertise them.
I hope this works and thank you everybody who submit to this post as our disease is unfortunately over luck when it comes to disability and ADA's position on how truly debilitating UC is.
I wish all of you luck and health and peace.
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!