Infliximab for Crohn's Disease, Maintenance User Reviews

• Len...
• July 3, 2015

"I have been on Remicade for nearly 4 years. Prior to that, I had a variety of Crohn's issues, including two surgeries for peri-anal fistulas, severe fatigue, and lots of other fun stuff. I have been very lucky in that I have responded very well to the stuff, and now most days I am fortunate enough to forget I have the disease. I was apprehensive about potential side effects, but to date, I have experienced none. Prior to Remicade, I took a few medications which did absolutely nothing, but the Remicade had a pronounced effect within 24 hours of my first infusion. If you have Crohn's or Colitis, I would seriously consider an anti-TNF blocker (haven't used any of the others) and stay the hell away from steroids."

• Mot...
• October 17, 2015

"My son has Crohn's and lost 30 lbs in 2.5 months. He took the medicine the doctor said to take, but then he developed a fistula. I could tell he was in a lot of pain, but yet he would not tell me what was going on. Both of us, being very uneducated about this disease, had no idea of the trouble he was headed towards. I made an appointment with the surgeon, the surgeon confirmed a fistula and said he needed to take Remicade. My son has had four Remicade treatments, and I have to say he was doing a lot better after the first treatment. It has been almost nine months now, and he is back to his average weight of 190. We are both afraid of the Remicade, and we don't talk about it very much at all, but I do have to admit it has given my son his life back."

• gol...
• Taken for 1 to 6 months
• August 31, 2012

"I am a 65-year-old male, and I acquired Crohn's Disease in 1965 at age 19. Remicade was approved by the FDA in August of 1998, and I was given my first dose the next month. Back then, they only administered 2 doses. I received the second dose 3 months after the first one. I have had no further doses since then. When I got the first dose, I was in the midst of a flare, and I had an actively draining abdominal fistula. Three days after the first infusion, the fistula closed of its own accord, and I happily avoided yet another surgery for Crohn's (I have had over 20 surgeries). I have been SYMPTOM-FREE since the second infusion. I have more health issues now, but at least they are not Crohn's related."

• Anonymous
• August 18, 2009

"I have had Crohn's Disease for 18 years. I was extremely ill for the first 8 years. My doctor put me on Methotrexate, and I got better, but not 'well'. Then, Remicade came out. I have been getting infusions every 8 weeks for over 7 years, and it has saved my life. I will say, though, that at one time they hoped to wean me off of the Methotrexate, but I started having flare-ups and the time between infusions was increased. Since I am back on the Methotrexate and Remicade, I have had no problems at all. Yes, I know my immune system is very weak, but I avoid anyone who is sick, and try to get enough rest when I can. This combination of drugs has worked for me and I hope I have helped someone out there! You may need something else with Remicade."

• mus...
• Taken for 1 to 2 years
• December 31, 2014

"I have been dealing with Crohn's disease for around ten years now, and I was only properly diagnosed 2 years ago. I have received Remicade infusions every four weeks for the last year, and it has made a very significant improvement in my everyday life. I no longer need to take pain meds to get through the day, and my energy levels are closer to normal than they have been in years. Before Remicade, it had got to the point where I could barely walk due to lower back and hip pain, all related to Crohn's."

• Goo...
• July 21, 2015

"Right after my daughter's 13 yr. birthday, she had severe bleeding and was diagnosed with severe Crohn's and colitis. She has been on Remicade since January and has infusions every six weeks. She was put on Prednisone in March since the infusions did not stop the bleeding alone. She is now being weaned off the steroids, thank God, and is on Remicade for the rest of the year for now. She gets a boost of energy after her infusions, but is very smart about what she can and can't eat. Prayers to you all going through this."

• J R...
• Taken for 10 years or more
• May 14, 2019

"I was diagnosed with Crohn's disease when I was 26 years old, and I am now 66 and have been on Remicade since 2008. I get my infusion every 8 weeks, and for me, it works for my Crohn's. I am somewhat tired after my infusion, sometimes the next day for about half the day. For me, I can't imagine not being on it."

• A H...
• Taken for 10 years or more
• July 25, 2017

"I have been on Remicade since I was 7 years old when I developed Crohn's disease. I am 26 years old this year. For the past 19 years, I have been receiving this medicine, and it has kept me healthy. You do need to find a cycle, be it 4, 6, or 8 weeks, for your infusions. I do every 6 weeks, and it keeps my symptoms minimal. The day of and the day after the infusion, I feel like crap, tired, painful joints, but after that wears off, I feel a lot better than before the infusion."

• Mom...
• Taken for 1 to 2 years
• December 29, 2014

"My son started Remicade at 13 years. He has severe Crohn's flare-ups, and this was a last resort aside from surgery for him. The Remicade treatment gave him few side effects. He didn't get any headaches or tiredness. And he didn't get sick easier like they said he would. When almost our whole house (7 of us) got the flu, Micah didn't. Micah just took his last dose 8 weeks ago after being on Remicade for over a year and a half. (Micah was on Lialda too.) Even when they used the amount of Remicade, Micah was still getting flare-ups every other month or so. They tested his blood and found out he had antibodies to the Remicade, which means his body was attacking the Remicade, and that's why it was only working right after the infusions."

• Jkl...
• March 30, 2016

"This nightmare all started 9 years ago with an abscess. This turned into a fistula. The fistula went away after years, then I developed another one on the opposite side. Then multiple fistulas. 10 surgeries later, and now I have a fistula through the vagina. I finally changed doctors. My doctor put me on Remicade and methotrexate, and I am finally seeing results. Extremely tired, I could continuously sleep my life away. I haven't felt any inflammation for weeks. No pain pills for 4 weeks now. So cross my fingers this works."

• Anonymous
• May 24, 2009

"I am a 28-year-old male and was diagnosed with Crohn's 6 years ago. I had a flare-up with an abdominal aneurysm and lost approx 90 lbs. I was put on Remicade, and it has saved my life. I have been on it every 8 weeks for about 4 years and have regained a healthy weight, and my symptoms are at an all-time low. My only complaints are that getting the treatment is time-consuming and the cost is obscene if you don't have good insurance. However, despite all that, it truly has saved my life, and I couldn't be happier with the actual results of the medication."

• and...
• July 24, 2013

"I am 37 and have had Crohn's since I was 18. Three surgeries of the terminal ileum. From 18 to 27, I was very, very ill. The Remicade has basically helped me to have a normal life again. I feel great these days, but one gets to the point where you feel good and want to be medicine-free. You hear horror stories of people getting off Remicade and getting galloping Crohn's disease coming back, and then the Remicade doesn't work so well."

• SHE...
• June 28, 2009

"I'm 32 and I've had Crohn's now for 14 years. Remicade was a godsend but only for a limited time. I started off like everyone else with IV every 8 weeks. Then after a couple of years, it was wearing off faster, so then every 6 weeks. Then every 4 weeks, then I was back on the steroids along with the 4-week treatment. Well, after 6-7 years on Remicade, it wasn't working anymore. I do recommend it because I would give anything right now to get those 6 years back, because even though I became immune to it, I felt 20 times better than compared to now. Since the Remicade, nothing has worked for me since."

• Anonymous
• February 25, 2011

"I was diagnosed with Crohn's disease when I was 16 years old. I am now 47. Remicade has been a blessing. I am one of the very fortunate ones to have no real side effects. I have been on Remicade for at least 6 years. I am able to hold down an excellent job and enjoy being a wife and mother. I am grateful that I have a job with great benefits. I wish that the cost was not so outrageous so that others could benefit from this medicine. My son is on Humira, and they have a program that decreases the cost significantly. Even with my insurance, they cover a large portion of my co-pay. All we can do is hope that the makers of Remicade will offer the same someday."

• Tsa...
• October 27, 2013

"Ok, I have had Crohn's disease for 15 years this December. I have maintained myself just fine with minor problems. Recently, I have learned my pain tolerance is so extreme I have been putting up with stuff I shouldn't be for an uncertain amount of time. Two questions from people with experience would help: 1. How is it going forward with these fistulas? Unheard of before last Wednesday, and I have two forming or in the process of. 2. I have limited options going forward, and Remicade is seeming the best course of action. How have people done with it long term, it being an immune suppressant? I am knowledgeable about these things, and I am hoping to hear from people who have experience dealing with fistulas and taking Remicade. Thanks, Troy S."

• tso...
• September 25, 2009

"I've had Crohn's for 12 years, and I'm 44 now. I believe my Crohn's was triggered or worsened by a doctor misdiagnosing my lower back/hip joint pain from Crohn's and prescribing heavy ibuprofen. I tried Asacol, Imuran, and Pentasa, but always ended up taking prednisone to calm the symptoms. Every February, I ended up with flare-ups. The doctor put me on Remicade 4 years ago, and other than some swelling up in the hands initially and getting perma-colds occasionally, it has worked very well. Now my insurance is trying to force me to go to Humira. The doctor is fighting it, but we'll see how it goes. Hope this helps."

• Anonymous
• April 26, 2011

"I am a 16-year-old male and was diagnosed with Crohn's disease when I was 8. I have only been on Remicade for about 8 months, but have not seen much of a difference. My energy has stayed the same, and I haven't grown any. Improvements have been that I don't have the morning cramps that I usually get, and my appetite has grown. I went from 135 pounds before the infusions to 145 pounds. I have a bloody nose at least three times a week, I now catch stomach viruses a lot easier now, and I feel dizzy/lightheaded often. Overall, I guess it's working, I will do an update when I have been on the medicine longer."

• Anonymous
• January 9, 2010

"I am a 29-year-old male and have had Crohn's disease for 8 years. When I was going through college, I became very ill and, over a two-year period of ups and downs, lost 100 lbs. Only due to the grace of God, I made it through college with a civil engineering degree. I was first put on all the typical drugs: Imuran, Pentasa, Asacol, Prednisone, B-12 injections. I received the Remicade initially only when I had flare-ups. I watched my diet to a T (specific carbohydrate diet), but would still end up flaring up. For the past 6 years, I have been on a maintenance dose of Remicade every 10 weeks and have done very well. I do have a goal to eventually get off the Remicade."

• Ser...
• Taken for less than 1 month
• July 9, 2016

"My 14-year-old had her first Remicade infusion 10 days ago. After 8 days, she had severe serum sickness. Her fever shot up to 106, and her blood pressure was really low. She spent 24 hours in the PICU. It was very scary. Needless to say, she won't be able to take it again. We are hoping there will be no lasting effects, but only time will tell. Her symptoms of serum sickness were: fever, chills, severe joint pain, hives all over, swollen hands, red eyes, and dry mouth."

• Anonymous
• Taken for 1 to 2 years
• July 23, 2020

"My adult daughters both have Crohn's disease and are on Inflectra, and both now have fistulas, which should never have happened while on infusion therapy. My oldest daughter was feeling great on Remicade, but to save money, her insurance company made her change to Inflectra."

• sha...
• May 9, 2009

"I am 24, and I was diagnosed with Crohn's disease a year and a half ago now. I've been receiving this infusion for the past 12 months. The relief was brilliant, bar constantly catching coughs, colds, and flus, but it was worth it as I could lead a normal life again. My infusions were every 8 weeks and could take anything up to 4 hours, but my remission time between infusions began to steadily decrease. I have now had my 9th infusion and receive them every 5 weeks. My body has grown an immunity to the drug, and my doctor is changing me onto Humira as a last resort to avoid surgery. Hope this helps somebody."

• Lin...
• July 3, 2020

"I have been on this medication for 14 years now and maintained remission without any meds. I also had 2 healthy babies while on Remicade. I was diagnosed with CD of my ilium at 20 years old. I had been on Pentasa and then Imuran. Imuran worked okay, but it hurt my stomach, and I never felt truly 'good.' I was put on Remicade after my last blockage in 2006, and I have been in true remission ever since with Remicade alone. I am a little tired after my infusion for a day, but then I feel totally normal. My two kids had no side effects from using during pregnancy. They are now 6 and 3. I had 2 c-sections with no complications. The only thing it affected was that my kids couldn't get the Rotavirus vaccine because it was a live vaccine. (No live vaccines until 6 months for Remicade babies.) That vaccine is new and not critical. Remicade has a payment assistance program, and they help with co-pays, regardless of income."

• A-T...
• July 3, 2008

"I am 22 years old and have had Crohn's disease since age 17. I can't take steroids of any type - makes me go crazy. Remicade is the best drug I've been on for my disease. It works great but has some bothering side effects for me, but they are not bad enough to quit getting this medication every 8 weeks at the hospital through I.V. It takes about 2 or 3 hours for the treatment to be over."

• Kwi...
• Taken for 5 to 10 years
• April 13, 2018

"Six years of Remicade infusions to replace prior intake of prednisone. Must say quite effective, however, about 3 1/2 years into it, got shingles of the eye and subsequent post-herpetic neuralgia (and there's still some itching almost five years later). Then, in August of 2017, got cellulitis in the right arm, a very painful infection requiring a seven-day stay in the hospital on antibiotics, followed by a week-long IV administration at home. Once I was better, I stopped the Remicade, and so long as I am enjoying the remission, I'll never return to it. My GI doc has suggested Entyvio, but I most likely wouldn't even do that. Heck, if it ain't broke, don't fix it! (I don't wish to tamper with my immune system and bring about more disasters!)."

• WCW...
• April 12, 2020

"I am now 80 years old and was diagnosed with Crohn's about 3 years ago. Late in life, I know, but was misdiagnosed with IBS and put on mesalamine, which only made me lose my appetite, lost so much energy that I could not walk 10 feet. Went to a teaching hospital and was quickly suspected and diagnosed with Crohn's. Shortly afterwards, I was put on Remicade. Total remission, regained strength and bowel control within a week and appetite. At first on 8 weeks but noted a tendency to some flare tendency toward the end, so I was put on 6 weeks. Have had no problems and lead a 'normal' life with my wife, children, and grandchildren now! Make sure I follow my doctor's advice, including all vaccinations he recommends. He does full blood work before every infusion. He is very quick to respond to any contacts or questions I make with him."