Remicade Reviews

Remicade (infliximab medication)

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.

Wikipedia about Remicade/Infliximab:

Infliximab (trade names Remicade among others) is a chimeric monoclonal antibody biologic drug that works against tumor necrosis factor alpha (TNF-α) and is used to treat autoimmune diseases.

Remicade patient assistance program : Help Paying for Remicade/infliximab

Remicade side effects can be found on the medication side effects database here.

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.

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Remicade
Average rating:  
 98 reviews
 by Kathy
I want off REMICADE

I'd like to give this drug 5 stars as it did save my life and my colon. I've been on it for about 3 years. It took an intervention but I when I went on it I was someone who had Ulcerative colitis near entire life and this hospitalization was my second and near death only this time nothing was working (any of the drugs including prednisone). I immediately went into remission. Like infusion #1 the hemmoraging in my colon ceased! It was like a miracle! However! Here I am three years later and I am experiencing the WORST IMAGINABLE joint and muscle pain, dull headaches, fatigue, and with that depressed af. I'm athletic and always have been and I'm slowing giving up anything I really enjoyed doing recreation wise because my body is killing me. It is worse for 2-3 after infusion and then just reaches a baseline of mild hell until my next. I get the minimum dose of 5mg every 8 weeks. In additionally I've suffered with some very weird face rashes, one diagnosed as staph which I've never in life had, some mouth sores inside on cheeks and tongue also not common for me, and also whether age related or not my eyesight went from near 20/20 to horrible in just a matter of months in the last year. My quality of life is decreasing rapidly. I've been searching for answers or alternatives. My dr as most doesn't give much help..they just want to keep you where you are at because you are in remission. Lastly the above is just my daily life degrading I should also point to all the reasons not to be on this drug. The side effects and warnings are insane yet they give this out like candy! Why aren't more doctors talking about the use of LDN or other therapies. Oh yeah MONEY. So sad.

 by Kalsey

I have been on remicade since 2015. And it has helped me have a normal life.

 by Lauren Vogel
Remicade

Remicade initially worked for me after the first infusion. After the second infusion, I started having severe joint pain (which I thought was actually a groin pull at the time). After my third infusion, I had debilitating joint pain all over my body to the point where my husband had to carry me up and down the steps. This confirmed that what I thought was a groin pull after my second infusion was actually joint pain. Besides this horrible joint pain, I also developed a red rash around my mouth and my skin (especially my back) was itchy. The medication costs a significant amount of money. I recently learned that I have developed antibodies to the medicine although I would not take it again anyways based on the side effects.

 by Diane M
Side effect no one talks about...

In 2016, I was put on Remicade during an emergency hospital stay. I was so bad off if I had waited another day I wouldn’t be writing this review. It worked and by 6 months I was in remission and stayed there. Off and on during the first two years I would notice I’d have fatigue and aches and pains a week before my infusion. It was stated that was normal and maybe Remicade level increase likely. By the start of my third year, I became incapacitated with severe pain in joints, muscles, and tendons. Physically I was a mess and then mentally with anxiety, depression. Only a very high temperature indicating for me inflammation was raging brought me my second hospital stay in 2019. The diagnosis drug induced lupus. A side effect only a very small portion of IBD patients experience. Not a category I wish to ever be in again. 6 months after being Remicade free, lupus symptoms have disappeared. Granted Remicade was the sledgehammer to the penny nail to eradicate my flare and help heal my colon yet it was the worse thing for my body. Lesson for others , please be your advocate and review side effects even the rare ones.
Oh and through all this experience my colon stayed in remission. I’m currently on a course with Entyvio.

 by Rob D Walker
Remicade works but.....

Its an awesome drug thatworked wonders for my uc. It kept it in check. But....now Im being FORCED by the insurance co to do have it done at home.
I live alone and i feel vunerable. My drs only ever gave me asacol/predsione and imuran. When they didnt work they didnt want to see me anymore.
Why didnt they give me a diet plan?? Why does the drug cost $88,000???
But yes I do well on it for over ten yrs. In 48hrs my stomach stops rumbling

 by Jono
It stopped working

After working for around a year it stopped working.
My immune system started eating it. It was great while it worked though. Even if the infusion took 6 hours cause of the side effects.

 by Karen Horvath
Remicade

I have been on a Remicade infusion every 8 weeks for 8 years and it literally saved my life. My only other alternative was colon removal as none of the other medications provided any relief. Occasionally I will have a very mild flare-up but I can usually associate it with something I ate. So thankful for this medication.

 by Eric Lloyd
Remicade/Heart disease

Was on Remicade for a number of years with it helping some.My body was processing the drug too quickly so infusions were shortened to 6 weeks. Still using the drug up early so quantity was increased.Did not feel the best after first increased treatment for several days. Several days after 2nd treatment thought I was having angina,turned out to be a heart incident with heart rate over 190 bbm with subsequent heart damage . Many trips to Emerg and 5 days in CCU I'm trying to get better but is going to be a long haul. Doing research ,with my heart condition I probably should have been switched to another drug instead of increased remicade.Have had 3 previous heart attacks over 20 plus years before this incident. Started Entyvio last week and my fingers are crossed. To be truthfull scares the heck out of me

 by R Ems
Remicade works for me

I started Remicade immediately after a flare forced a cancelation of a trip to Europe 4 years ago. Whether it was the Remicade or the requisite benadryl that is administered before the infusion, it was effective within 48 hours and has been effective ever since. I'm of the belief that flares occurred with me because of stress. During my first infusion 4 years ago, I experienced relief from the UC symptoms immediately after the dose of benadryl.

 by Amanda
Working well for me

I have been on Infliximab/Remicade for four infusions so far and it’s been helping me. Although I had a lot of stress last month so my colon has flared a little as I wasn’t being consistent with my diet too and I took up smoking for a week after a family member died suddenly. But the side effects for me have been severe itching mainly on my back and small bumps over my body. But that was only for the first three treatments. Now it seems to have calmed down a lot. I’ve also got two infections in my gums so have to have two teeth removed. But that might just be an aside. Otherwise I have been able to work fully and do as much as I need to survive.
I’ve noticed a massive increase in my sex drive, from nothing to finally being able to feel like I want to have a sex life again, whether that’s just since having an iron infusion and I have more energy back I don’t know. But it’s a very welcome side effect. All in all I say go for it. It’s given me my life back again. So I highly recommend.

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38 thoughts on “Remicade Reviews”

  1. The only thing that’s ever worked for me, usually overnight too. Thank goodness for Remicade or Infliximab as its called in the UK. I’ve been lucky in that I’ve never had a side effect in 4 yrs of being on it.

  2. I went on Remi for both UC & psoriatic arthritis. Well it never helped my pa it sure kicked my UC in the butt. I would’ve stayed on it but the costs were, too high. After switching insurance companies, I went back on it but discovered I’d build antibodies to it and again my co-pay was too high. It was an overnight miracle for my UC.

    1. I was on remicade for 3 years in the state then I had to move to Saudi and I discontinued the medication due to the fact that I did not know that they had it there…. 8 months later , I am back on it . the doc. said that I had to start the treatment as if it was my first time…. 2 weeks then 4 then 6 etc…
      all on all…. the medication proved to be effective even after I discontinued the treatment for a period of 8 months.

  3. Have been on Remicaide over three and half years–have never had any side effects to speak of. Last colonoscopy couldnt find any evidence of the UC, visually or on lab work. Would like to stop but warned if I do it may not work if had to start up again. Did help my guts for sure but biggest improvement was the UC induced arthritis especially in my feet (couldnt walk!) Fortunately Medicare covers it and doesnt treat it as a prescription drug rather a procedure so am able to afford it. Would recommend one try it if given the choice as i think you will know if it works or not within a very few infusions. Good luck to all.

  4. Hi all, so happy for those of you that get results from infliximab, I however got nothing from it and have been in flare for 8 sloid months with no let up, I have tried everything known to man with no effect. So my options are limited now and surgery is scheduled for wed 27th March and i add I have to have a permanent ileostomy because my uc is too bad to leave anything behind, But I feel lucky anyway what’s a bag it’s nothing. Good luck to you all x x

    1. Julie I’m having the same problem with my remicaid not working anymore. Last month my Gi dr found large deep ulcers in my descending colon. I’m also taking hydrocortisone enemas with no relief. Dr said he would switch me over to humara, but infliximabs make me break out with itchy whelped bumps and sore joints. I’ve been struggling with IBD for 10 years now with no relief. The only time I was in remission was when I was pregnant with my child. What’s going on that you have to have surgery? I’m so scared that will be my out come as well. Oh and 5 years ago I was diagnosed with diverticulitis on top of all this. I think I’m running out of options, but the thought of them cutting on me scares me to death. How bad is it that you need surgery?

  5. I had my third infusion last week and still don’t feel like it’s working. If it is working it’s a very slow process for me. I will say 3 days after the first infusion my left side cramps went away but the blood did not decrease. First couple of days after the second infusion, blood decreased but then actually increased a week later. After the third infusion I had the same results. One or two days of decreased blood but then back to increased blood. Also, I have noticed heart palpitations but that would be the only side affect I have noticed. I am scheduled for another infusion at 8 weeks but not sure if I will do it. we are taking it week by week. I think it’s worth a shot if you have not tried it though so you know your options. I am just waiting for Vedolizumap to be approved as a last ditch effort.

    1. Artie,

      When do you notice those heart palpitations? I’ve been on remicade 9 years and gotten it 3 diff. clinics in the US, and 2 abroad and have noticed a trend that if the remicade is infused at too high of rate that I get that feeling of heart palpitations/the wheezy feeling when you run too hard in the extreme cold for a day or two after. So now I make sure that it’s not faster than 2.5 hours for me personally and that they slowly ease into the highest rate (since they step the pump rate over the course of the infusion). If you aren’t noticing them right after your infusion definitely talk to your doc about it. I started getting remicade at a children’s hospital and they did it over 4 hours so when I went to adult clinics and they were doing it in 2 my body was not very happy about it.

      Also, 8 weeks is actually the longest interval you can have and it didn’t work for me. I’m now a happy “remicade” camper at 5 weeks. Talk to your doc about up’ing the interval before you to rule it out completely. I really hope it works out for you! No one should feel like they’ll have to do a last ditch effort.

    2. Thanks for all the great info UCers!! My doc is recommending it now, and I’m still unsure. I have read the possible nasty side effects like leukemia. I have been having good BMs my problem is the pain and inflammation, on a scale of 0-50 my inflammation markers came back 900, which may explain my extreme exhaustion.

    3. HI Angela,

      I actually have them about 15 times a day regardless of what I am doing. I now believe it’s not the remicade causing it but from an electrolyte imbalance due to all my diarrhea. The heart is dependent on a nice balance. That might explain why you get them after a run as well. This is just what a cardiac unit nurse (my sister n law) told me today and it actually does make sense to me because my flutters occur during the morning hours after bouts of d. But I dunno.

      Artie

      1. Hi Artie!

        Glad you were able to figure it out! I actually don’t get the runs anymore…been in remission for a couple years thanks to remicade :). It does make a lot of sense, my only other guess would have been acid reflux, which also feels like heart flutters, but having it after bouts of d doesn’t make a lot of sense for it.

        Do be careful though with what you’re using to replace those lost electrolytes which I’m sure you know. Things like gatorade are horrible for you, I’ve always been recommended clear pedialyte as the best option to replace it.

        Angela

        1. Coconut Water is an excellent, natural electrolyte replacer without additives or artificial coloring compared to pedialyte. Higher in potassium too.

      2. My first infusion was amazing. Stopped my constant bathroom trips within a day. After the second infusion, my symptoms started to return several weeks before my next treatment. After my third infusion I was back to a full flare up. Now my GI has me back on Prednisone and Lilada. He is also recommending methotrexate, but I’m not happy with the possible side effects. I hope the prednisone can stop this flare soon. The GI insists i need the combination until i am under control and that the Remicade will then take over and i can get off of all the orher stuff. Im not convinced and I’m exhausted!!

        1. Hi Tharissa,

          I wish you the best with getting through your flare. You will. Keep your head up and always realize you are not alone with whatever your feeling. The remicade experience you had was quite similar to mine. I hope you are feeling good real soon,

          Adam

            1. Hi Richelle,

              No, I’m not taking any medications from the western world. however, I did pick up a bottle of multi vitamins from trader joe’s the other day for about 15 bucks on a request from my wife and I’ve been popping one every day or two. Pee has turned a bit more neon green at times (pretty neat) but no, other than that, no medications.

          1. My doctor is recommending Remicade as my next option. I am on immuran and lialda now; both at max doses. From what I have read about remicade it seems very expensive at about one thousand dollars every infusion. I know that each insurance coverage is different but when everyone is saying expensive what kind of ballpark are they talking about? I am currently fighting a battle with a small mass on my retina that the doctor are not sure of what it is… cancer? Maybe… not sure. The bills keep coming from that and don’t think I could do both.

            1. Hi Marisa,

              Since remicade has to be administered in a hospital, the hospital portion of your insurance goes into effect, not you prescription insurance. It does depend on insurance. I don’t think I’ve ever heard remicade only being $1000 an infusion (unless you mean that’s the co-pay?). Remicade runs around $900 per 100 mg of drug (the total mg is then dependent on your weight, I weight 130 and get 300 mg). My infusions total in around $3000 each time (drug + the infusion suite bill) but we have a great insurance and we only pay a couple hundred each time. BUT there are supplemental programs that you can use to help cover the co-pays for remicade. Look into RemiSmart, it’s a reimbursement program so it could at least help you out for the first year until you get your retina taken care of. I hope that it’s not cancer!

              1. Thanks Angela! Yes I meant the copay of one thousand. Your info was great. I am glad to hear its not always so much.

            2. VERY interesting fact. My Chiropractor….of all people… decided to test me for food allergies. I was reluctant because of the out of pocket costs, but desperate for answers. After 3 weeks of waiting,my Chiro calles me on his way out of town Friday to tell me the results are in. I am allergic to grains, dairy, eggs, chocolate…..and it goes on and and on.

              My head is spinning to say the least!!! Is this the reason for my UC or just a secondary issue to the UC? Is this caused by the UC? When the hell did I become allergic to all this stuff? Can I get off the meds and have a normal life if I change my diet? Why has my GI never tested me for food allergies?

              Anyone with any experience, please help!!!!

            3. Hello everyone. I have a Remicade question…. I have had my first two doses (2 weeks apart). It worked wonders and I can make it through the day pretty comfortably most of the time, but I am definitely not in remission. My next (final) dose is six weeks away and that suggests to me that I should be fully better by now and the last dose is more of ‘maintenance’-type thing. Is that right or will i continue to get better over the next six weeks? I’m eating a no-sugar, low-as-poss-carb diet, which has definitely helped (especially the no-sugar bit). I am also taking my 50 billion friends a day (RenewLife Probiotic). This is only my second flare so I’m not much of an expert. The first one was eventually controlled by Prednisone but I had to take 60mg for months and months, so this time I am trying Remicade.
              All advice very gratefully received.
              Katherine

            4. For those of you who are concerned about the price of your infusions, please look into the program called RemiStart! I’m a college student paying for tuition and and have monthly living expenses, and found this program one day while researching Remicade. This program pays for all of my infusions, the cost of the medication, my pre-infusion meds, and the blood tests after it. All I pay is $69 an infusion, because RemiStart can’t technically cover all of it. This is MUCH better than the $9,000 the infusions originally cost. Give RemiStart a shot, it’s so easy, and the people running this company are saints.

            5. My son, now 17, was diagnosed with Chrons at age 10. At first the doctor prescribed him prednizone and colazol. He had never taken pills before so to go from no pills to 6 per day was a bit much and we quickly realized ‘it wasn’t happening!’ Remicade turned out to be the best solution. He does get skin break outs that are painful and as a teenager now, hates the gross flare ups that lave pus bumps that he has to wait to drain/dry up. I admit it’s gross, but the alternative is much worse. Those of you complaining about skin problems and minor pains, it’s understandable, but think back to the days when you were in pain and experiencing symptoms far worse than these. I hate that my son has to deal with this issue at all, but thankful that this drug continues to work. My feeling is that the older he can get without experiencing a resection the better. In my humble opinion, unless you are experiencing life-threatening side effects, or found something better, don’t remove yourself from the medication.

            6. Thanks to everyone for the great reviews.

              I see that lot of people with moderate to severe or severe UC have a great success with Remicade.

              Has anybody tried Remicade for mild UC.

              Mild UC means no stomach cramp, very few bowel movement and only little mucous
              and little blood in stool.

              Getting dependent on Steroid to control flare-up,

              I will appreciate any comment regarding the mild UC flare-up control.

              Thanks

              Bijoy

            7. Getting first remicade Infusion on Monday…what to expect? After 10 weeks of being in a flare and trying to beat it down with the SCD, GAPS etc, nothing worked. 60mg of prednisone did nothing and oral and enema 5 ASAs made it worse. After two extended hospital stays in the last month I “fired” my GI due to the fact that he was not able to follow up with me for three and half weeks. I found a new doctor in Boston through this site, called, saw him 2 days later, had a colonoscopy two days later and now I am scheduled for remicade. I can tell you that I am pretty upset about having to take this route but I can no longer handle living like this. I have missed almost two weeks of work and I cannot physically handle the pain. My body literally tolerates nothing. How soon after your first infusion did you feel better?And how do the first couple work?

            8. Hi Andrea,
              If you find 5 ASAs make you worse and certain diets are not working, look at salicylates in the foods you are eating, as you may be intolerant. Mesalmine medications contain a high level of salicylines and certain (not all) fruits, vegetables, herbs, spices, nuts etc contain very high levels of salicylates. Hopefully, this may prevent you having to have Remicade infusions. All the best.

              1. Hi mary,
                Unfortunately we do not know for sure if the 5 ASAs are bothering me but because they were not helping me, my doctor told me to stop. I have read a post about you mentioning salicylates. I did some research, I am currently on an autoimmune paleo diet mixed with elemental shakes. My body is not tolerating anything. I am in such a flare I wish I didn’t have to take the remicade route, but after all of this suffering I am at my last straw. I am going to see a naturopthic doctor who I will work in conjunction with my GI. Being the super holisitic, person that I am, I believe there comes a time and a place where you need western medicine, if only for a bit to really help your body out of the weeds. One think I have learned is that every body is so different and what might work for one, doesn’t always work with the other :/…hoping i find some relief after this first dose.

            9. Hi Andrea,
              If you really haven’t had much improvement since stopping mesalamine, then you are probably not allergic to it. You may have read that my son also takes Rifaximin as his GI believes ulcerative colitis is caused by bacteria and the body’s immune system is responding to this. I also believe not everyone is going to respond to one thing. Remicade may be the right approach, along with a suitable diet for your body. I hope you have success with Remicade very soon.

            10. I have had severe to moderate ulcerated colitis for over 5 years. I have been taking 100 mg of Mercaptopurine and 1200 mg of Mezavant XL along with 2 mg of Prednisolone every day. I am able to manage my illness better and over come the lack of energy and depression from the medications by taking Ocean’s Alive Marine Phytoplankton and eating a Low FodMap diet. I feel better and manage my illness successfully but not a 100% recovery.

              http://www.naturalnews.com/023853_marine_phytoplankton_microalgae.html

              http://www.ibsdiets.org/fodmap-diet/fodmap-food-list/

              A new Doctor is starting me on Remicade but I am doubtful of a 100% recovery. These cutting edge medications with awful side effects are not the complete answer to your recovery or managing ulcerated colitis. If you manage to eat less junk and take at least 10 drops of the Marine Phytoplankton every day you will feel better and have more control over your illness.

            11. BANANAS OK?

              For those on Remicade, who are also trying to follow the SCD diet, does anyone know if bananas with brown spots are ok? I know they are allowed in the diet (b/c easier to digest than green) but specifically with any medication that is an immune suppressor I’m not sure if bananas are ok. So are they ok ONLY if you are not on this type of medication? I say this b/c I read that bananas with brown spots have TNF properties which increase the immune system, which when you are on a medication such as Remicade, that is something that you do not want. Will a banana a day increase the immune system enough to cause a flare, even if mild? I would really appreciate anyone’s thoughts.

              1. HI Jess,

                Thanks for writing. I myself have never heard of anybody mentioning problems that they felt was specifically due to eating bananas. Anything is possible of course, but again, I don’t recall any mention of this before on the site.

              2. SKIN RASH HELP?

                For those on Remicade or any other medication that causes the side effect of skin rashes, has anyone found an effective way to treat the rashes? Aloe seems to help a little but I also read that it has laxative properties, so I’m thinking it might not be the ideal solution. Thoughts?

              3. My son had his 3rd Remicade infusion about a month ago. He did not have any side effects from the infusion, but he is starting to flare now. He is gluten-free and we largely follow the SCD diet. Can he take L-glutamine while on Remicade? Will the L-glutamine lead to an increased immune system response?

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